Tina's Journey

A little bit mushy

2012-02-14T10:08:00.002-05:00

According to the retail industry, today is the most important day of the year to show how much we love another. You're supposed to shower your significant other with flowers, chocolates, jewelery or at least a card to express your love. Today, some big, theoretical cherub pulls back on his bow and aims right for the tender hearts of romantic partners everywhere. Love is in the air.

I think Michael and I actually officially celebrated Valentine's Day once or twice during the early years of our relationship. But for one reason or another (a work committment, the restaurants were too full, we had a coupon that couldn't be used on Feb. 14), we decided to celebrate on the 15th instead. It worked out well. We got a great meal, discounted chocolates and a less crowded venue while accomplishing the same goal of celebrating our love for each other.

As we accumulated more years together - and I think this may be true of many couples who have been together a long time - the importance of this red and pink holiday dimmed in significance. Life's activities or events for the kids took precedence. It was far more important to get the 27 little valentine cards popped out and labelled for the class than it was to find the perfect card to say, "I love you" for my husband, who knew how I felt. I think we also realized we show our love for each other in the little ways we live together every day more than we do on some snowy event in February.

Although, I must admit, I think we also easily fall into the trap of taking each other for granted. That's why I want to use this blog to scratch the surface of how much Michael means to me; especially as we go through so many difficult days this year. He is my sunshine and my rain. He brings me joy and always provides a soft shoulder for crying or cuddling. He's always there for me and I love him with all my heart.

Yeah, a little mushy, but that's my perogative. My words are my valentine to my sweetheart. That and perhaps a sweet, little kiss when he gets home from work.

I hope you have a chance to celebrate love today and you get what you need or want from a special someone (which can include friends, kids, parents, neighbours, etc.). I know some of you will be presented with some beautiful blooms or decadant chocolate, while others may get something sparkly. Yeah for you! I was very happy for the big squeeze from my daughter this morning. Heck, some folks out there even get engaged today. (It's been known to happen.) But I've got everything I want and need because I have two wonderful children, and my husband and soul mate will be coming home to me.

Tina

Breathless

2012-02-13T16:12:00.000-05:00

I'm a wee bit worried about whether I'll be able to get my chemo this week. I can feel I'm not recovering as quickly and I'm not as strong as I should be by this point in the cycle. Over the last couple of days, I've felt slightly unwell, tired, shaky and, well, off.

This morning, exertion left me breathless. Walking up and down the stairs had me panting. I had to sit on the toilet and rest after my shower (for goodness sake!) to recover. My breathing is quicker and a little more laboured today. I have a headache. I know it's all because my hemoglobin is low and my body isn't circulating oxygen very well. In other words, I don't have enough red blood cells.

If my hemoglobin is too low, I can't have chemo. Instead, and if my levels are too low, I'll need a blood transfusion. Last time I got one, I needed a few days for the blood to circulate and help me recover before I could proceed with my treatment. That delayed my treatment by a week. It'd be so disappointing to have to postpone again. I just want to get the next round of chemo in so I can keep kicking cancer's butt. So I desperately hope my levels aren't as bad as I think.

Then again, I don't want to jeopardize my health, so I will do what I have to do. If my levels are low and it's dangerous to get treatment, I will listen to the docs and follow their instructions.

Today, I rested, rested and rested some more. I lounged around in bed, reading, writing and dosing. My plans for the evening involve encouraging Michael and Tara to make dinner. I have appointments and events scheduled for this week - some of which are optional - that I will assess whether I attend each day. I don't have any control over how quickly my hemoglobin recovers. There's no magic food I can eat nor vitamin I can take. My body has to create more hemoglobin on its own over time (or I'll need to become a vampire again and get that transfusion). But I figure resting because I don't feel well certainly can't hurt.

Hopefully, my body will experience a sudden turn around and I'll bounce back one day this week. My appointment with Dr. W and blood tests are on Thursday, so I still have a few days to recover. Chemo is scheduled for Friday and my fingers (and toes, legs, eyes and everything else) are crossed I can proceed as scheduled.

Tina

Swine devine

2012-02-11T10:55:00.000-05:00

As I've mentioned before, I spend very little time looking in the mirror these days because I don't like what's reflected back at me. While my no-eat-and-vomit diet has shrunk my waist and body, the Dexamethasone has my face swollen to puffy proportions. In the whole scheme of things, I know it's not a big deal and no one cares but me. Michael says I'm still beautiful, but he has to say that because he's married to me.

Just to give you some idea of the dramatic changes, I'm posting some photos (apologies they're not the best).

Here's me in June, when the CT showed the disease was back but before I started experiencing the physical symptoms of the cancer. I was dressed for work and ready to take on the day.

Here's me in the hospital, all skinny from not eating for 10 days. I look pretty happy despite it all. It must have been a good day.

And here's me with my fat face from the steroids. Don't I look impressed? What a big difference! And it's even more puffy now. That's my beautiful sister with me as we enjoyed a hockey game together.

As you can see, there's a big difference. It's amazing what steroid medication can do to a person. But if it makes me feel better, helps me eat and keeps the nausea at bay, I'll learn to live with my moon face.

Most of the time I eschew make up, but I decided to put some on when I went shopping with my sister the other day. A very appropriate saying came to mind - It's like putting lipstick on a pig. While that may sound harsh, that's what I felt like.

Beautiful!

Tina

Ignoring good advice

2012-02-10T15:28:00.001-05:00

You know when you give yourself advice and you know it's absolutely the right thing to do, and you do the exact opposite? That's what I did today. I have a feeling I'm going to pay for it, but I couldn't help myself. I couldn't stop.

Shortly after I woke up, I started to clean. First I reorganized a pantry because I had it in my head the Tupperware containers would look better on the new, open shelves in the kitchen. From there, I decided I needed to clean the house properly. We have friends coming for dinner tomorrow (and yes, I know they don't care about the status of my house, but I got it in MY head it must be spic and span). So I got out the dust rag and polish, the bathroom cleansers, window cleaners and rags, the stove-top and kitchen sink paraphenalia and I started to scrub.

Maybe it's because I haven't personally thoroughly cleaned my house in a while, but I acted like a woman possessed. I moved objects to eradicate the little specks of dust behind the decorative candles, I polished the bottom of the toilet until it sparkled, I went to town with the stainless steel cleaner until my kitchen sink shined, I removed the carousel and scrubbed the little bits of food adhering inside my microwave and I washed down the fronts of all my cupboards and appliances. I operated like I was subject to some military-grade inspection. I don't know what got into me.

To top it off, I decided it was necessary to do three loads of laundry while I was spitting, polishing and shining.

I knew I should stop when I got a nose bleed part way through the morning. But I couldn't. I seriously felt and still sort of do) like someone has taken over my body and I'm out of control. I don't feel like myself. It's the strangest thing.

By the time I was done (although I still have a load of laundry in the dryer), I was exhausted, shaky and slightly dizzy. I laid down, figuring I would fall into a deep nap, only to be stymied by my own brain. My body wouldn't shut down. I dosed for probably about 10 minutes.

Trust me, I know I should have been resting today. I understand I need to get my rest and build up my red blood cells and platelets. I gave myself that exact same great advice just yesterday. I told myself several times today to stop, that it could wait until tomorrow and that I didn't need to be so thorough. But I didn't listen and I let this other-world, psycho Tina take over.

The good news, I have a clean house (after Michael does his job of vacuuming and cleaning the floors tomorrow). I suspect the bad news is I'm going to crash pretty darn early tonight.

Tina

Good

2012-02-09T16:03:00.000-05:00

It seems only fitting after a blog post I entitled bad, I should write one that says good. I started to feel much better yesterday. By evening, I was able to enjoy dinner with the family, go to my daughter's riding lesson (something I don't feel up to doing very often these days) and have a post-ride Timmy's cafe mocha. It was delicious. Coffee and me are good friends these days as I am having a hard time resisting a good cuppa java. It makes me feel good, so why not?

Today, I enjoyed the sunshine and got out of the house by going shopping with my sister. I found a few good deals and got a bunch of much-needed groceries. It's fun to spend the day with Angie and we were able to enjoy some tasty chicken pot pie and biscuits at lunch too.

I think I can say my stomach situation has finally started to improve. I only vomit every few days and it's usually when I do something silly like try to eat too much or consume a food that's heavier (for example, my delicious steak dinner I savoured - and then saw again - the other night). I'm not saying it's perfect because I still have lots of gas and have to be careful, but the situation is better. As a result, I'm happier.

I seem to be through the yucky, depressing side effects of the latest round of chemo too. I know I'll continue to tire easily because my red blood levels are probably dropping to their lowest right around now, but I can nap. That's far easier to deal with than the emotional and psychological triggers the chemo seems to bring on days three and four post treatment.

So I'll enjoy the sunshine today and celebrate the energy I do have. I'll plan lower-energy activities with my friends over the next week. I'll read my book and surf on my computer. I'll rest and do the best I can to make sure I'm physically prepared for the next round of chemo-killing juice next Friday.

Tina

Bad

2012-02-08T07:41:00.000-05:00

Yesterday, was a bad day.

I was:

Irritable - Good thing my family was at work and school.
Sore - My stomach hurt most of the day.
Tired - A weary, lethargic, heavy tiredness filled my body.
Weepy - Oh, all the emotions swirling around in my head and heart.
Withdrawn - It's better to be alone when I'm that way.

I puttered around a bit on my computer, responded to emails and surfed Internet sites, but wasn't really productive. Then I lounged in bed, wrote in my journal, napped and read. By the time my nurse showed up around 3:30 p.m., I still hadn't showered or dressed. How pathetic.

After she left, I hopped in the hot tub and showered, transforming myself into someone who could be seen by the public. I summoned the energy to make dinner and read the newspaper. By the evening, I was capable of having coherent conversations with my family.

I'm not sure what today will bring, although I feel better right now than I did by this time yesterday morning. But I know from experience that can change rapidly as my energy wanes. I know I'm still on a chemo low, so I may still experience another emotion-filled, very low-key day - and that's okay. I refuse to feel guilty about it (see how much better I'm getting at taking care of me?).

As I told Noah this morning, it's his job to work hard and do well at school and it's my job to fight this cancer and try to get better. (His initial response to the question about my job right is to be a mom. Yeah, that too. But, rest assured, my son (and daughter), as long as I'm breathing, I'll continue to be your mom.)

Even if today is another lounging day, hopefully I'll start to climb out from the side effects. These days, while necessary, make me feel stuck in limbo. I want to continue back on the road to energy and well-being so I can be more engaged in life.

What will engage you today? Is it something fun? If not, could it be?

Tina

Recovery week

2012-02-06T09:31:00.001-05:00

While I woke up feeling really good today and have been super productive so far this morning - hot tub, shower, budget calculations, benefit paperwork, etc. - I can already feel the tiredness starting to settle on my shoulders and behind my eyes. It's only 9:30 a.m. and I'm already considering sliding under my heated blanket with a book. That's not a bad thing.

It is day three post chemo and so the side effects are due any time now. My hemoglobin was also low going into chemotherapy at 95 (normal is between 120 and 140), so I'm probably going to feel more tired, quicker.

I have very little planned for the first three days of this week, simply for that reason. I will go with the ebb and flow of my energy and do what I can. I'll give the ninjas and the chemo the energy stores they need to fight the tumours. It's the best thing I can do for my body and my recovery right now (and I'm actually doing what I'm supposed to do).

Tina

Chemo 4B

2012-02-05T05:55:00.000-05:00

If my treatment goes according to schedule - and that's a big IF - I am now two-thirds done my chemotherapy regime. I should be more excited. But I'm not holding my breath because I don't want to be disappointed if I have to have more chemo, or some addition type of treatment. I'm going to be cautiously optimistic and celebrate the little blessings I get along the way.

One was how well everything went on Friday. My blood levels were acceptable to actually get chemo. While my white blood cells were a little high (I've had a runny nose for the past week and may have a touch of a cold) and my red blood cells were a little low (the chemo is kicking them down), neither put a halt to treatment.

I got the bed in the private room, where Michael and I had a bit more privacy. The nurse also started the saline drip while the blood tests were running (instead of waiting until after) and that simple act shaved an hour off my time stuck to the IV pole. So I was out of there around 1 p.m. to do a little shopping and get on with my day.

I also want to celebrate yesterday. I felt great after chemo, had lots of energy and was able to eat decent meals. In fact, we took this good energy day as an opportunity to reorganize our kitchen. Michael got some shelving units from work, and we made them work in our house to create new and better organized kitchen space. No, they don't match our other cupboards (some of which have been "temporary" since we moved in 1999), but it's an improvement. And with limited funding, sometimes, you just become creative. I'm thrilled with the end result, and I'm happy I was able to put the steroid energy to good use before I start to crash.

I suspect I have one more decent day before the side effects kick in and I'm going to celebrate by having lunch with some friends. But, I have to admit, so far the side effects are generally tolerable. I get tired, bitchy, depressed, lethargic, antsy and lose concentration, I seem to be avoiding most of the painful physical ailments.

Fingers crossed, my stomach even seems to be continuining to behave a little better with fewer vomiting episodes.

I suspect the tiredness will start to become more of a problem during my last few treatments though as my red blood cells will probably continue to drop. But one day at a time. Those ninjas need the energy and blood to fight the cancer. If need be, I'll get another blood transfusion to boost them up.

Now I'm going to go take advantage of my cooperating stomach and enjoy a hot cuppa java and read a novel. Mmmmm. Enjoy your Sunday.

Tina

Ninja infusion

2012-02-03T07:02:00.000-05:00

Gather sharp weapons, slip into those black, flowy uniforms and gather in formation my formidable and sneaky little ninjas, for today the next wave of you get to slip in to my body to attack the cancer. Your brothers and sisters must be having a tough fight, and I fear you'll find more than a few casualties and injured as you stealthily make your way to the battlegrounds. But I believe they're finally making inroads and weakening the enemy. Your fresh resolve and renewed strength are needed to weaken and kill those evil disease-filled cells.

Oh I know you're brave, my little friends, and wouldn't choose any other way to use your training and unique strengths; and for that I heartily thank you.

Go get 'em. As you do, my village and I will scream, shout, pray and whisper, "Die cancer die!"

Tina

Regrets

2012-02-01T12:09:00.000-05:00

Since we're all human, fallable and make mistakes, we all have regrets in life. I was reminded of one of mine this morning and I want to share. I learned from it, and maybe you'll glean something from my lesson too.

When I was diagnosed with ovarian cancer a couple of years ago, I learned a friend from high school was also fighting the disease. She was diagnosed a few years before me, fought it and then learned she had lung cancer. The doctors weren't sure of the primary site of the disease - the ovaries or the lungs - but it was taking over her entire body and she was dying from it.

My diagnosis was so new and raw, I couldn't even bring myself to contact her via the safety of the Internet for a while. I wanted to be in denial about where a diagnosis of IIIC ovarian cancer could lead and didn't need a living, breathing, physical reminder of what could happen. (That's also the reason I couldn't - and still haven't - joined any ovarian cancer survivor groups.) I wasn't ready. I wasn't at that stage yet.

Eventually, I mustered up the courage and emailed her, explaining we shared the same fucking disease and apologizing for taking so long to contact her. I explained my fears and how I wasn't ready to hear about where the disease could lead. She was kindly sympathetic and explained she understood. She gently shared parts of her struggle. We commiserated and it was good to talk to her.

She died about a year later. She was in hospice for a while and a person who was a friend to both of us was very involved in visiting and caring for her during her last days. I got updates from this co-friend, but I was never brave enough to go see her myself. In fact, I couldn't even screw up the courage to attend her memorial service. I gave the excuse I was in treatment and I didn't have the energy, but I should have gone.

I regret I didn't visit her. I'm sorry to this day I didn't go to her funeral to say goodbye to a fellow ovarian cancer warrior.

The lesson I learned from this experience is experiences sometimes don't coincide with your timetable. There will be times when you're not ready for the realities life throws at you, but you may have to suck it up and deal with them as they come. I should have visited my old friend. I regret not screwing up the courage to do just that. Now I must live with the regret.

I guess what I'd say about my experience, is don't be afraid to visit someone who is sick or struggling because you're uncomfortable with it. If you have a relationship (or want to even re-establish one) with someone, don't hesitate. (By the way, this is not me talking to anyone in particular about my situation, but speaking generally.) Time has a funny way of sneaking away on us.

Tina

When I hit publish

2012-01-31T14:58:00.000-05:00

I wanted to explain how difficult it was for me to write my blog yesterday; just as I'm sure it was challenging to read it. I struggled with what to say and needed to journal about it before I could let my fingers skip along the keyboard. I didn't know exactly I should say, how much to share and how honest to be, because I know some of the potential scenarios could mean repercussions in my future. But in the end, I decided I needed to share my truth, as I see it right now.

I hope I'm wrong. I hope my the picture of my future is a lot brighter than the dull and muted tones I used in with the words I used yesterday. Or I hope the hues are brighter and more vibrant for times before the greys and browns start to invade the landscapes. I guess I'm struggling between being realistic and being hopeful. It certainly doesn't mean I'm clairvoyant. While I can guess about some of my future, I cannot pretend to know exactly what it holds. I don't even know what awaits me just around the corner.

In fact, my stomach is starting to feel a bit better. I'm almost afraid to type those words for all to see, but I've noticed a slight change over the past few days. Let's just saying, I'm being cautiously optimistic.

Sometimes when I write, it's scary for me to hit the publish post button. Yesterday was one of those days. Just thought you should know.

Tina

Mental shift

2012-01-30T10:39:00.000-05:00

Along with the physical realities my CT report highlighted, its words also caused some mental shifts in my brain. I'm not sure if it was the doc's facial expressions, a turn of phrase he used or the harsh realities of the situation described in my report, but I'm now in a different, less naive place than I was at the beginning of last week.

I hope I'm wrong, but I'm starting to believe treatment will now consume more of a year than time in remission will. In fact, I'm at the point where I just hope I get to have remission, even if it's for a few months before I have to start treatment (chemotherapy, clinical trial, something new and novel) again.

Up until last week, I've believed I could get through my six treatments, do relatively well with the side effects (again) and then have six or so months of remission where I could get stronger, go on vacations, get back to work, get into an exercise routine, etc. Then I'd get on a clinical trial (with or without chemotherapy) or start chemo again (the same or a different/new kind) and try kicking this cancer to the curb again. I'd be able to repeat the cycle of fight, then remission and then a reoccurence down the road.

But that appointment, along with the fact it's taking so long for these tumours to shrink and respond to treatment, as well as my stomach issues got my mind stomping on those highly held, and probably pie-in-the-sky beliefs. I also got the "this-is-a-chronic-disease" impression from Dr S and that I'll never be able to go back to the way I was before. No, he didn't come out and say it. It's just the feeling I got.

I also suspect I won't be able to beat this bout of cancer with six rounds and that if I continue to tolerate the chemotherapy drugs well, I'll have more tacked onto the end so we can continue to shrink the tumours and possibly bring on remission.

This entire situation feels like a big bucket of cool water thrown on my hopefulness. The H2O isn't cold and I can't give up on having time and opportunity, but it does make me think differently. There is so much that's unknown and I don't know what to think or what's going to happen. I even learned about a woman who had chemotherapy 17 times in 12 years. That's a lot of treatment, but it's also 12 years of living. If that's what it takes, that's what I'll do.

But as a result of this brain shift, I've realized I'm still living my life in limbo a little bit, waiting for that time when I am in remission. I have plans for a special trip when I make it there. While I can still anticipate a tropical or European jaunt for that time, I can't put other smaller milestones on hold.

Now that's not to say that on my good days, I have to go back to being the gung-ho, list-making, type A personality I am when I'm well. There is nothing wrong with taking naps, being contemplative, writing in my journal, slowing down, making more time for family and friends. In fact, that's what life should be about. But I also have to plan little trips and special events. I have to take advantage of the days when I do feel well enough because if I'm going to be in treatment for a long time, they're going to be all I have.

I know this blog is sad and I don't want to come off as being hopeless. But these potential realities make me feel melancholy, angry, thwarted, disappointed, disillusioned, overwhelmed and contemplative. It's part of the journey I'm sharing with you.

Tina

The official report

2012-01-29T10:36:00.000-05:00

During chemo on Friday, I got a copy of the preliminary report from my CT scan with the official wording of what's going on in my abdomen. To be honest, I found this report far from enlightening. The ones I used to get in Hamilton contained a lot more specific information, with locations and sizes of tumours, more information about the ascities distribution and comparative data on previous scans. So, in other words, the report provides information, but also raises questions, which I'll bring up at my doctor's appointment in three weeks.

It's taken me a few days to blog about the results because I'm mentally processing them and what they mean to how I react mentally, physically and spiritually. Today's blog focusses mostly on the physical reaction to the results, as I'm still working on the mental and spiritual components. Sometimes that takes a bit longer.

It's a good thing Dr S verbally mentioned the lack of change in size of the tumours on Thursday when we chatted because it helped me mentally prepare for that news in the official report. In fact, it says, "The overall degree of carcinomatosis is slightly worse than in October." But remember, the CT scan to which they're comparing this one was taken in early October, when I was in the hospital for my operation, and I didn't start chemotherapy treatment until Nov. 17, so the cancer had six weeks to grow. And, Dr. H stated he saw shrinkage from the Regorafinib treatments from the previous scan in the summer. So, it's really hard to compare apples to apples.

BTW - According to Wikipedia, carcinamatosis means: a condition in which cancer has spread widely through the body. I hate the definition, but I can't argue with it.

To be honest, I'm extremely disappointed that after three rounds of chemotherapy (x 2), the CT scan isn't showing shrinking tumours. I really expected improvement, especially given that's what's happened during past treatment cycles. I feel, perhaps, we're not on the right track in terms of treatment and we need to change it up. But, as I mentioned the other day, the docs are happy the cancer is stable at this point and not growing. They're content to continue with the treatment I'm currently receiving. I need to trust their judgement, but I expected more, quicker. Perhaps I'm naive to think I will respond as well and in anticipating a good prognosis for remission.

I did get encouraging news. My CA-125 dropped from where it's been steadily sitting at 355 to 200. So the chemotherapy must be starting to work (it's just darn slow) and the tumours have not invaded any other organs. Apparently, ovarian cancer easily spreads to the small bowel and mine is clear. "In fact, the large and small bowel loops are distributed evenly within the abdomen with no significant tethering or kinking."

My colon is distended with no wall thickening. The subcapsular dome, which always gets flagged as being present on my liver during CT scans, is still there, but since there's no change, I'm not going to worry about it. What's new with my liver is the fluid in my abdomen is causing an indendation and flattening it. The portal, hepatic and splenic veins are patent (which I take is good) and the lung bases are clear (very good).

Speaking of my bowel, I got a little surprise when I went in for my CT scan on Wednesday. To examine the bowel, I needed a cup of contrast inserted into my anus for the scan. While the procedure wasn't really that bad in the whole scheme of things, it was yet another indignity in the whole fight against cancer. I'm sure I'll experience a lot more indignities and procedures - and I'm kinda glad I didn't know about this one in advance - but it was a "oh really?" kind of moment when I found out.

The biggest news on my CT scan, which explains my stomach, eating and vomiting troubles is I have " . . . moderate to large amount of ascities mainly collecting in the anterior abdominal cavity. There are also thick bands of periotoneal carcinomatosis, which is exclusively seen in the left upper quadrant almost completely encasing the stomach, more so interiorly with the stomach being completely collapsed despite being given oral contrast."

In other words, I have lots of fluid and bands of tumours surrounding my stomach, especially in the back, which is collapsing it. But it's not causing any bowel obstruction, which was a concern, and why the extra bonus procedure during the CT scan. No wonder it's hard to eat and drink. I have to be so careful about the amount of food I consume and I'm trying different combinations, times of day and solid versus liquid combinations to figure out what works best for me. But you know me and my love of food, and sometimes it's just so darn hard to deny myself a tasty repast, even though I know I'll pay for it later.

I did realize the other day (and I think I went on and on about it to whomever would listen), I would feel so much better if I could just get my stomach issues under control. The side effects from this chemotherapy are tolerable and manageable, so if I could eat and not throw up, I'd be so much happier. It's amazing how society revolves around food and I think I'm more of a foodie than most, so this whole situation is extremely difficult for me. I have to be patient. But I'm so tired of being patient.

Dr. S shocked me on Thursday because he mentioned inserting a feeding tube so I could get nutrition. What?! No way. Perhaps he was under the impression I was throwing everything up or I couldn't get any nutrition into my body, but I'm doing okay. Luckily, the ascities production seems to have slowed and I'm managing. I'm certainly not at the point - and hope not to be for a long, long time - where I'll need a tube to feed me. Sheesh.

So the CT report posed more questions than answered and didn't provide the same level of detail as I used to get. During my next appointment, I'm going to pull out some of my old reports and ask if the radiologist can do a comparison, with similar type of information. I think that would help the docs and me better understand the progression on my disease and make better informed choices.

Bottom line, I guess I should be happy there's proof through my CA-125 reduction that the chemo is working, albeit slowly, and perhaps I can expect some changes in the sizes of my tumours and ascities production (and as a result, the stomach situation) in the next while (weeks? months?). I should also be happy there the cancer hasn't spread to other organs. I have to focus on the good news, although I also am in the process of psychologically processing what this all means to me (topic for a future blog).

I've also come to the realization I may need more rounds of chemotherapy, extending my treatment time. Of course, that depends on my tolerance to it. But I'm okay with that. Then there's always the possibility of reassessing the drugs' effectiveness and changing it up. I'm okay with that too. I'm willing to do whatever I can, whatever I can tolerate and whatever tried-and-true or experimental treatment I can to beat this nasty and invasive disease. I refuse to accept this is the way it's going to be. I need more time.

Tina

Stable

2012-01-26T18:12:00.000-05:00

Just a quick update. The CT report wasn't ready for my oncologist so he didn't have any official news for me. From what he can tell, the disease is stable. There's still lots of ascities in my abdomen and apparently the tumors look to be about the same size. But that's the unofficial report by those who don't normally read these things.

To be honest, I'm disappointed. I expected shrinkage. I expected change. Anything less than that to me means we should look at changing treatment. But Dr S, who saw me today, said stable is good. They're happy it hasn't grown and spread. My definition of success is different, I guess.

So we aren't changing treatment and I head to the chemo suite tomorrow morning at 8:15. Let's send in some more ninjas and attempt to shrink these cells. Die cancer die!

Tina

Witchy woman

2012-01-26T07:29:00.000-05:00

Do you remember when the witch dresses up as an old peddler woman to offer Snow White the poisoned apple in the Disney classic? She has prominent nose and her chin sticks out. Her cheeks are puffy and her wrinkled, little lips sink into her face. That's kind of how I look all puffed up on the steroids. I even had acne covering my cheeks, which could resemble the witchy wart the evil stepmother sported.

Or, are you familiar with those little shrunken apple women sewn with old nylons (For what purpose, I'm not sure? Are they supposed to be decorative little, old women apples? Hunh.)

It's not a good look for me. And my face seems to be the only location the puffiness from the Dexamethasone seems to affect. Suffice to say, I don't examine myself in the mirror for very long. I conduct my skin and hair care regime quickly and vamoose from its shiny surface.

While the appearance of my face makes me feel unattractive, it's not important in the whole scheme of things. So I try to let it go (and perhaps give a little witchy cackle every once in a while).

Tina

P.S. I go give blood and see Dr. W today to learn the results of my CT scan. I'll blog more when I can.

A jug of radioactive juice

2012-01-25T08:05:00.000-05:00

No coffee.

That's my biggest complain right now. Followed, very closely, by no breakfast.

I have a CT scan appointment today at 10:40 a.m., so my oral consumption at this point is severely limited. I've been told to sip only clear liquids until I show up at my appointed time to drink the radioactive juice. In the past, I've been instructed to drink nothing, so I'm sticking to little drinks of water. Of course, that isn't cutting it and my body is protesting.

But I want this CT scan; I need to know its results. I want to know if the chemo is working and the tumours are shrinking. I need to know if we're on the right track or if we need to change the treatment.

I meet with Dr. W tomorrow where I'll bombard him with my questions and turn to him for the answers I seek. Then I have chemotherapy scheduled for Friday. I'm antsy and anxious. Let's figure out what's going on and keep moving forward with action. I need to know that there's a point behind all I'm currently going through - and if and how it will change.

Tina

Living with dying

2012-01-24T07:29:00.001-05:00

"Somebody should tell us, right at the start of our lives, that we are dying. Then we might live life to the limit, every minute of every day."
- Pope Paul VI

When I was at Wellspring a couple of weeks ago, I glanced through the pamphlets on ovarian cancer. There were the usual booklets on symptoms, treatments, side effects, support for husbands and how to talk about diagnosis with children. All great and necessary support material for women and their families. But I have to admit, I found the one entitled Living with Dying surprisingy jarring.

I guess I'd never consciously considered what I'm doing as living with dying. But I guess I am. The statistics and the realities of ovarian cancer, especially when diagnosed at stage IIIC, like I was, are bleak. According to the Public Health Canada website:

Ovarian cancer is the fifth most diagnosed (accounting for four per cent of all new cancers)
It's the fifth leading cause of cancer deaths (accounting for almost five per cent) among Canadian women
Among gynaecologic cancers, it is the most lethal, largely due to the fact that it is often not diagnosed until late stage when symptoms develop due to invasion of other pelvic organs or from metastases.
Symptoms initially tend to be vague and as the disease progresses may include abdominal distention or pain, alterations in bowel or bladder habits, and gynaecologic complaints such as pain on intercourse.

The latest statistics I find report approximately 60 per cent of women diagnosed at the later stages (that's me) die within four to five years. Yikes! I've been living the disease for almost three years now.

As much as I tell myself I'm not a statistic and I'm (relatively) young, those figures weigh on my mind - and on the minds of my family. Especially since I have a hereditary form of the disease with the BRCA-1 gene mutation, I was diagnosed when I was only 42 years old and I'm currently battling my second reoccurence of the disease. Those are all negatives in the belief-I-can-beat-this mental mind set.

I also constantly complain ovarian cancer doesn't have many famous and vocal spokespeople. Even actress Kathy Bates, one of the most well-known survivors, mentioned at the end of this video how she was afraid to come out about her experience with the disease. I also feel sad that many people who could have been great advocates ended up dying of the disease. It doesn't have a great track record.

Although I've (almost) sadly become used to my new normal of upset stomachs, inability to eat, vomiting, multiple medications, bowel issues, bloating and ascities, these are not normal healthy occurences in life. They are major red flags of a serious medical illness. That's to say nothing about the fact I subject my body to toxic chemicals two out of every three weeks in an attempt to beat back those tumours and wrestle control of my body.

I've been feeling sicker and sicker over the past six months, which unfortunately forces my mind to wonder if I've started traveling down the road to the end. However, I guess it's still only hovering in the background if I was shocked to read a pamphlet entitle, Living with Dying. Yet, the reality is, since the moment I was diagnosed with this disease in April 2009, I will most likely end up passing away from it.

If I don't consider myself living with dying, am I in denial? If so, why? Do I need a doctor to say there's nothing else he can do? That the disease has spread too far? That we've exhausted all the treatment options? Will that be when I feel like I'm truly traversing the road to dying?

But the truth is, I could also suffer a complication, like one I had in September, that could kill me instantly. With all the crap in my abdomen, any day could be my last day. But living with those thoughts is scary and depressing; even if it could be reality. But then again, perhaps I should live like each day as it could be my last because then I'll concentrate on the people and things important in my life.

Yes, that's ideal, but it's also a lot of pressure. It's creates a lot of stress to think this day could be your last and you have to make the most of it (or you're a failing). Some days are just normal and mundane, and that should be okay. I guess the goal would be to identify or do something special in each day, just in case. To remind those who are special you love them and not to put off wonderful things you could do today.

In the back of my mind, I'm sure I've been continuously wrestingly with the whole living with dying concept. I've planned my funeral, I've spoken to Michael about my wishes, I've mentally gone to that deep, dark place. But I didn't name it. I didn't call it living with dying.

During a serious talk the other day, Michael surprised me by telling me he feels like he's watching me die a little bit every day. I didn't know what to say. I understand where he's coming from, but it make me sad. It makes me feel like we're not celebrating life because we're anticipating death. Yet, it's almost inevitable to have these thoughts. It's difficult to live in a place where you want to enjoy and celebrate because you're alive, yet know death is skulking in the corners, trying to make life difficult.

The whole living with dying monniker almost makes me feel I'm not being hopeful. It makes me feel that regardless of the treatment I take or the clinical trials I participate in, ovarian cancer is going to get me. Yes, as I said before, I do eventually feel it will be the cause of my demise, and hope is a lot more difficult to sustain the third time around, yet, I'm not giving up.

The bottom line is, I'm not ready to die. I'm hoping for many, many more years before I have to seriously consider my death.

I know God has a better place for me, but I'm quite content to remain in the imperfection of life on this Earth. I'm not prepared to leave all this life has given me - my soulmate, wonderful kids, generous family and wonderful friends. I look forward to exploring unknown places and achieving new accomplishments.

I'm sure I'll continue to struggle with and contemplate this concept. Eventually I may even come to terms with it, but right now it still generates a lot of conflicting thoughts and emotions. In the end, I guess we're all living with dying, but it's those who face devastating illness who tend to contemplate it more.

To almost die is to know that one day you will, and to never feel the same way about anything.
- Patricia Cornwell, The Body Farm

Tina

A little embarassing

2012-01-22T06:21:00.000-05:00

Bowel movement
Poop
Crap
Shit
Dropping a couple friends by the pool

I never thought defecation would be such a prevalent topic in my life. I talk about it:

To my doctor and nurse
With my husband
To my homecare nurse
In my notes in my healthcare journal
Via Blackberry messenger with my sister
And embarassingly enough, with all of you via my blogs

Of course, when you have children, it's differernt talking about bowel movements. The embarassment wanes with wee ones. You need to ensure they're having them frequently enough and check the consistency. In fact, I even had to catch a load when my son was wandering around diaper-less on the couch one day and I've been known to scoop floaties with my bare hands from the tub after a bathing accident. But we're talking about my little kids, not me.

When this topic of conversation arose with my social worker this week (yup, even talked about it with her), she reassured me it can become a common fixation. When all systems are go, the relevancy of bowel movements fade to the background. They're just a regular part of normal life. But when the poop train pops off the rails - even temporarily - the shit hits the fan.

Think about a time when a gastrointestinal bug gripped your abdomen, rippling it with cramps and leaving you stranded on the toilet with explosive diarrhea. Or when you sit and strain, wishing you could just go. We all have at least isolated (albeit embarassing) incidents with poop problems. Our bodies don't always work the way we want.

Unfortunately, with an illness like cancer, defecation rises in importance. "How are your bowels moving?" is a question I've been asked at almost every appointment since I got sick. It's an indicator of heath. Changes in habits can be signs of other abdominal problems. For me, my lazy bowels are indicative of my lazy stomach and sluggish abdominal system. Sheesh.

But as my social worker assured me, I'm not alone in my focus on poop. Unfortunately, my fixation means all those around me, including you, hear about it as part of my journey with cancer. It's all part of the ups and downs, ins and outs. But I promise, I'll try not to make the stories too crappy.

Tina

Do you believe in miracles?

2012-01-20T06:11:00.000-05:00

In the past, I’ve written about my belief in angels. As a result, this story gives me chills and makes me smile.

Miracles do exist; you just need to know where to look for them. For my friend, Dorothy, she simply needs to look at spare change.

After a two year battle with bladder cancer, Dorothy’s dad, Ed, died in March 2009. She had a very special relationship with him and his loss threw her for a loop, leaving her feeling lost and adrift. Her dad visited her shortly after her death during a very vivid dream, and she told him she missed him enormously.

“But Dor, I’m with you all the time. You just have to start picking up the coins,” he replied.

After that vision, Dorothy started experiencing a strange phenomenon: coins started appearing in the strangest places. The next day at work, she lifted a file folder to find a nickel mysteriously tucked underneath. She cried.

“Good one, Dad. I know you’re there.”

From that point on, she started finding coins whenever she was struggling or felt she was going to lose it. When alive, her dad would often be a steadying hand in her life, telling her to calm down and reminding her when she was overreacting. With the coins, he’s continuing to provide that guiding presence, giving her strength, sharing a joke or just letting her know he’s around.

One day she had a horrific day at work. Everything went wrong and she didn’t know if she could physically or mentally face the next day. As she climbed into bed that night, she flipped back the covers to discover a coin in the centre of her bed. Dad was at work again, telling her she was blowing the situation out of proportion, calm down and go face work again tomorrow. She got the message.

Often she’ll find coins in the corners of her office or be working on her computer and suddenly one will appear on her keyboard tray. One day, she was working at the Souper Fundraiser for Team Tina and her parking meter needed money so she didn’t get a ticket. At the curb, she discovered she didn’t have enough to replenish the machine, but looked to the base to find a sprinkling of coins to tide her over.

"Thanks Dad.”

Ed seems to have a great sense of humour with the coins too. One day, colleagues asked Dorothy why he was being so stingy with his denominations. Sure, he’d deliver pennies, nickels, dimes and the occasional quarter with his money distribution, but they wanted to know why he wasn’t delivering the bigger stuff, like a loonie or toonie. I guess, it’s ask and you shall receive because that very day, a toonie appeared in her cube.

His humour also shone through during a funeral. During his life, he and his daughter would often joke about the constant kneeling and standing involved in a Catholic church ceremony because they both struggled with bad knees. As a result, he and Dorothy would groan about the pain involved in the kneeling portions of the ceremony. Shortly after her dad passed, Dorothy attended a funeral at a Catholic church and when she had to move her foot to set down the kneeler, she found a toonie under her foot. She looked up, sharing the joke with her dad.

“You’re good.”

My friend uses her walks to work as her time to think, talk to her Dad and pray, so it makes sense she discovers coins during that time. One day, when I was unsure I was going to be able to get chemotherapy because I was dehydrated from vomiting and diarrhea, she prayed and talked to Dad on the way to work. On that one trek, she found 14 coins! Another day, when I was struggling with questions about treatments, clinical trials and my future direction, Dorothy was thinking about me while working. When she lifted her hand from her keyboard where she’d been sitting for hours, she astonishingly discover at 1901 Indian head coin nestled beneath her hand. She gave that precious penny to me and it sits by me as I write this blog.

“Thanks Ed.”

He’s generous and makes his presence felt for others too. Sometimes Dorothy will talk to her dad on behalf of friends, asking for strength and lo and behold, a coin will appear. It happened this past September when I was stuck in the hospital. Shortly after she shared her dad’s story with Michael and my sister, they found a coin in the corner of the hospital room.

Last March, Dorothy and two friends had an eerie experiencing on the way to the airport. The weather was snowy and bad, roads treacherous. On a ramp, the car they were travelling in started sliding off the road down the embankment and it was as though a hand shoved them back on the road. Her friends praised Dorothy for her fantastic driving, but she claimed it wasn’t her. By the time they made it on to their seats on the plane, they were shaken and thankful they weren’t sitting in the ditch. As they settled into their seats, one of the women found a dime sitting on the floor in front of her seat.

“Way to go, Dad.“

So what does Dorothy do with all the coins? The ones she feel are destined for others, like my Indian head penny or the one she found at the funeral, make it to a particular recipient. Some of them she keeps in a container in her house. But she admits she’s too Dutch not to use all the coins she finds. Some make it to buskers or street people she encounters on days when she finds some spare change, others end up in pockets, wallets, piggybanks and the general coinage of the house.

You may say it’s all coincidence or a fluke, but I truly believe in miracles. I believe those who have died can touch us from the great beyond in small and big ways. Dorothy’s dad happens to use coins; and I think that’s really cool. She believes it’s her dad’s way of staying in touch with her.

“I miss you too, Dad.”

Tina

Little joys

2012-01-19T09:42:00.000-05:00

I'm much better today. I started getting better both physically and mentally yesterday, and now I feel much more hopeful in several aspects of my life. Of course, it helps I've eased out of the chemo side effects. The overwhelming tiredness, lethergy and depression seems to have lifted. My mind is zinging among various thought, and I feel capable of organizing my thoughts, social life and activities. The day-to-day of life matters more now than when I'm sunk in the depths of post chemo treatment.

I also think the low-residue diet, medication adjustment and some tweaks I've done to my eating schedule are helping me physically. I'm experiencing less gas and my stomach pains have mostly diminished. I haven't thrown up in two days (whoo hoo!). While I gagged last night, I managed to keep everything in. It's amazing how much of a spirit lifter not feeling nauseous and vomiting can be.

While I'm optimistic, I'm only cautiously so, because I know health situation can turn on a dime. But it's good to celebrate when things are good. So I've got a batch of cauliflower soup simmering in my crockpot and am envisioning enjoying it with some crusty bread for lunch. Mmmmm.

I'm celebrating small victories and taking advantage of the little joys. There are lots of small, seeminlygly insignificant things in our lives and we all have to remember to acknowledge them.

Tina

Appreciate little and big

2012-01-17T08:35:00.000-05:00

It's amazing what I took for granted before. These are some of the small, seemingly insignificant activities I sorely miss.

Being able to guzzle a refreshing glass of cold water. I love H2O and its thirst-quenching properties. I used to gulp, swallow, guzzle and slurp agua via multi refillable water bottles every day. Now it doesn't hold the same appeal and I can only sip on it without my stomach quivering in protest, screaming "Too much at one time. Too much!"
Craving and enjoying an icy-cold Diet Coke with lime. I fondly recall the first fizzy gulps of a freshly poured (and lime squeezed) glass of the not-so-good-for-you carbonated beverage. Of course, my response to that first sweet and satisfying drink would be a lip smack and resounding, "Ahhhhh!"
Eating and enjoying a full-sized meal of whatever tickles my fancy knowing it'll stay in my body. I would love to be able to go out for lunch or dinner, order whatever I want, enjoy the entire satisfying goodness of the food, then have my body digest it and expel it properly.
Enjoying an alcoholic beverage. I haven't consumed nor craved one since I had my surgery in September. Now I enjoy a good drink and I'm a social drinker. I love enjoying a cold beer while watching the London Knights flip the puck around the ice or sipping on a smooth glass of Shiraz while savouring a meal, but I have absolutely no desire for alcohol right now. Even when I've tried a sip or two, the experience turned me off. I miss drinking.
Experiencing social encounters. I miss being with people, running into others, casual conversations and heart-to-hearts. I miss knowing what's going on with others through the normal day-to-day interactions of life. While I do try to make plans with friends when I feel well, it's not quite the same. It's a bit isolating.
Having energy. I feel tired alot of the time. Now while I know many who voice this complaint, this is a different, bone-deep, weary, sore-eyes kind of tired. I'm now acquiring the habit of napping regularly during the day and still my eyes start to droop, with my vision blurring, around 8 p.m. while watching TV. I feel I've lost my spunk and enthusiasm.
My zest for exercise. I used to enjoy going to the gym (or at least the way it made me feel when I exercised). I would work up a good sweat, make my muscles ache, groan and inwardly swear at the manoeuvers, and feel accomplished when I was finished. Exercising made me feel accomplished and proud, because I was doing something good for my body. I was making myself stronger in mind, body and spirit. But the desire and inclination to even walk on my treadmill is gone. I know I should do it on those days when I do have some energy. But then again, when are those? Is this the right time to be putting shoulds in my life? But I'm losing most of my muscle tone and turning into a loose blob, which makes me weepy.
Having perpetual, unwaivering hope. I used to have many, many more good days than bad. I'd bounce back from sad, scared, angry, frustrated and lonely days quicker. I continuously believed the situation would get better, and sooner rather than later. It helped me get through some pretty rough times. But time has worn down that pie-in-the-sky, perpetual optimism to a more down-to-earth variety.

I meant for this blog to start with the simple and everyday items I miss in life, but then it got very deep and philosophical. I guess my mind had much more buried on this topic than I realized. So I share it with you.

Don't take the little (or big) things in life for granted. Examine a few simple pleasures you enjoy today and be overly thankful for them - that first sip of a fresh coffee, a chance encounter with a friend at work whom you haven't seen in a while, the crunch of a perfectly sweet apple, a good joke that makes you guffaw out loud, a warm hug or a sweet treat you're enjoying just because you're worth it. Take joy in the small pleasures all around you.

Tina

Sandpaper torture

2012-01-16T08:46:00.000-05:00

A relentless, gritty piece of sandpaper continually grinds over my skin. Some days it smooths the surface, buffing up the beauty underneath to a beautiful shine, but today, the rough tool catches all the imperfections, bumps and knots, revealing ugliness within.

I'm worn down, as though the sandpaper slipped too far into a crevice and is grinding away at a particularly soft and sensitive spot. I'm withdrawn and bitchy. Despite getting ample sleep, my eyes feel so sunk in their sockets, I could easily scoop them out with soup spoons. My stomach continues to revolt. I'm tired of throwing up and feeling awful. I'm weary of being worried; and continually seeing it in the eyes of others. I'm not fit for man nor beast, and I want to crawl in a hole and hide.

Yet, I can't stop the sandpaper as it grinds on. Today I resign myself that it's working away on the soft, tender, underbelly of the piece of wood, but perhaps, its ministrations will create something unique, beautiful and unexpected tomorrow.

Tina

3B update

2012-01-15T06:04:00.000-05:00

I'm being a little comtemplative in my blog this morning, while providing a brief update. I'm taking the good with the bad, and overall doing okay. It's day three post chemo and here's the scoop:

The good
I sleeping much better since I started taking two lorazepam tablets before going to bed at night. I now get a good seven or eight hours of sleep in a row. I wake only briefly during the night to visit the bathroom or look at the clock, but then I'm able to roll over and drift off again. I've also been able to nap over the last few days, which I desperately need for healing and to allow the treatment to work. Of course, the heated blanket I got for my birthday may also be making me so cozy, my body can't resist slipping into slumper. Aaaahhh.

I'm not as uncomfortable and bloated since the paracentesis. The puncture site is almost healed enough for me to go back in the hot tub and ease these achy muscles.

I'm sitting here enjoying a delicious cup of coffee this morning. Sometimes I can't tolerate it and other days, I need to avoid the caffeinated beverage because of other liquid requirements. Yes, it's a small victory, but I'm counting every blessing I can take.

The ugly
I'm still throwing up. Even with the double Domperindone and low-residue diet, some of my food revisited me on Friday and Saturday. I know I can't expect miracles overnight, so I'm trying to be patient, hoping it'll just take time to get the food sluggishly stuck in my system out and keep the rest flowing through with the help of the low-residue diet.

I also needed to buy a laxative my doc recommended called Citromag to help clean out the other end. While my delicious Activia and Bran Buds worked wonders, it's too hard on my system. My stomach needs to work too hard to process that delicious, fibre-filled concoction, bringing the entire digestive production system to a standstill, leaving a junkyard of partially digested food stuck in my gut. So I must stick to medicated alternatives. Right now, my gastrointestinal tract seems to either dump it all or nothing (yes, pun intended), so I'm working to find some balance to keep my guts as clean as possible.

I think my side effects come a little earlier and a little harder during the week when I have two treatments in a row (or in other words, the B treatment). It's understandable when my body getting infused with the toxic chemicals two times in eight days. But if they're working to kill the cancer, that's the whole point.

As I keep thankfully saying, the side effects aren't nearly as bad as the Carboplatin/Pactlitaxel combination I've had in the past. Mostly, I'm tired, grumpy, a little sore, lethargic, weak, breathless and I have some blood in my mucous. We'll see if the bruises show up this time. I'll keep my eyes open for other signs and symptoms.

I still have the added complications of the bloating, gas, vomiting and bowel movement issues that I have to deal with, but they're not directly related to the chemotherapy. Luckily, I have a supportive husband, family and group of friends who understand when I'm not well and need to lay on the couch.

To close on a positive not, this was treatment 3B. If this chemotherapy is working (and I'm praying it is), I am half done!

Tina

Eating low-residue

2012-01-13T07:35:00.002-05:00

Everything I've been taught to eat - especially when I'm trying to eat well and lose weight - is practically thrown out the window with a new low-residue diet Dr. W put me on yesterday. White bread, white rice, processed cereals, cheese, cream soups, certain fruits and veggies without seeds, skins and membranes and cooked well, certain muffins (banana, chocolate, apple spice made with white flour), croissants, biscuits, potato without the skin, all sugars, plain cheesecake, candy, seedless jelly and jam, and most condiments. All the things dieticians like my sister tout to eat in moderation.

What I can't have includes: nuts, seeds, whole wheat products, popcorn, corn, mushrooms, coconut, yogurt mixed with seeds or fruit with membranes (strawberry, raspberry, blueberry, cherry), beans, lentils, sausages, chunky peanut butter, raw veggies, salad, berries, kiwi, fruit cocktail, dried fruit, bran, brown or wild rice, donuts with raspberry, blueberry, strawberry or cherry filling, pie with fruit filling, cakes with poppy seeds, raisins, jam with seeds or pectin, pickles, chutney or olives.

This is going to be a bit of a challenge because it's so differernt than how I usually eat. It also eliminates some of my favourite foods. But if it works, I'm all for it. Why the change? Apparently, my body is NOT processing my food in an expedient factor, and I'm full of gas and undigested meals. That's why I'm so bloated and probably why I keep throwing up.

Some of the foods I have been eating - yogurt and bran, whole grain toast, salad, etc - are hard to digest, which is slowing down my already sluggish digestive system culminating in a big, messy blob in my body. Chemotherapy, other drugs and probably even the presence of cancer can slow down digestion and my meal selections are contributing to the problem. It takes more energy and time for the body to process high-fibre foods (which is why you should eat them when you're dieting to feel full longer). These types of foods seem to be turning my digestive-system switch to the practically non-existent movement mode. Sigh.

I am also now to double up on the food-processing drug, Domperindone - so two tablets, four times a day. I'm also to double the steroid, Dexamethasone, to try to keep systems open and operational. I'm trying to be optimistic this will work.

I'm thrilled my complaints were listened to so quickly yesterday. I didn't have an appointment with Dr. W, but he sent me for the x-rays, came to discuss the results afterwards, made adjustments to my care plan and even suggested a CT scan. At this, I clapped my hands and said "yay." I told him I was worried and wanted to know if this treatment plan was working. So hopefully he'll have the results in his hot, little hands by the time I go for my appointment on Jan. 26.

I found out yesterday my CA-125 stayed steady at 322 from Nov. 8 to Jan. 5. When I expressed dismay it's not going down, B, my nurse, said, "But it's not going up." Harumph.

After the side trip for x-rays, and the visit and recommendations by Dr. W, the chemotherapy itself went well. My blood levels were great and once we got the thumbs up, the infusions went in without incident in just over three hours.

Today, I feel typically tired, but pretty good. As usual, I'll take it day-by-day and mentally urge those ninjas to fight, fight, fight.

Tina

It's chemo day

2012-01-12T07:24:00.000-05:00

It's chemo day! It's chemo day!

Yes, I know, I shouldn't be excited, but I am. I want to get more of those toxic, cancer-killing chemicals in me so they will work. I want to move forward. I want the cancer gone. I want to feel normal.

Normal is exactly what I didn't feel yesterday; I felt awful. My stomach hurt terribly. I had sharp, gas-like pains in my stomach and abdomen, cramping, vomiting and a general feelings of unwellness. I consumed mostly liquids (because I didn't feel like eating) and then when I ate dinner, I saw it again, and again.

I was extremely worried by the pain because it reminded me of the type that sent me to the hospital for emergency surgery because of a perforation. But, that pain didn't have the gas movement that accompanies this particular discomfort. So I'm hopeful it's nothing too serious.

While I don't see Dr. W today, I will mention yesterday's symptoms to my chemo nurse and ask her to pass along the news to him. I would love to discuss this latest phenomenon.

Of course, it could be any number of things: residual pain from the paracentesis, gas build-up in my body (that I always seem to have), a virus (there are many going around), too much Activia and Bran Buds on Tuesday, a fluke, an ulcer. Who knows? What I do know is when a day like yesterday happens, I, and everyone around me, gets incredibly worried and stressed.

I wish I had some answers. Is this chemo working? Is the cancer shrinking? What is this gas I seem to have all the time? Am I damaging my body by taking steroids regularly? When will this all come together?

I was so positive the other day, and I wish I could stay that way, but this journey is a roller coaster of ups and downs, highs and lows, optimism and depression. And it changes day by day.

Thank you for accompanying me on this wild ride.

Tina

Jinxed

2012-01-11T06:02:00.000-05:00

C'mon.

I wrote with such optimistic enthusiasm yesterday morning, yet by late afternoon I was once again veering sideways. Maybe I jinxed myself.

I had lunch with my parents to celebrate my birthday. With that extra room vacated by the ascities, I went gung ho. (I really should know better by now.) Then I was uncomfortable all afternoon. The presence of the food must have also pressed against the paracentesis site because I needed some sweet, little, red Extra Strength Tylenol to take the edge off the discomfort.

In addition, I skipped my Activia yogurt and Bran Buds routine for two days (only two days) while relaxing at the spa and I paid for it. I couldn't produce a bowel movement if you paid me - although my body really, really wanted to - and my lower back was killing me. Luckily, a couple yogurts, lots of trips to the bathroom and some undignified faces produces huge results last evening. (Here I am talking about crap again.)

Then to top it off, I had a vomitfest again last night from about 9 p.m. until midnight, when I had the big purge that cleaned me out completely and allowed me to sleep: But only until 4:30 a.m. Sheesh.

So during my hopeful, little blog yesterday, I'd put THIS all behind me. A lot too hopeful, a little too soon?

But I have to remember, I did get chemo on Thursday and may still be suffering some side effects. I'm still fighting stomach issues and bloating. I'm not expected to magically be well again after three litres of fluid are drained from my system - only to feel somewhat better, and I generally do. The fluid is only one of the many afflictions I have. I need to be patient and realistic. I have to be kind to myself. But, as I did in my blog yesterday morning, I can still hope. I don't plan to give up on that.

Now yesterday wasn't all bad. Like I said, I had lunch with my parents after my mom's appointment with the plastic surgeon. She's recovering well from her prophylactic double mastectomy and its follow-up surgery. The doc figures another month and she'll be all healed up.

A dear friend also got released from the hospital yesterday with good news about his health situation. Relief and gratitude filled my body with that news.

Michael is back at work and doing okay. It's never going to be perfect (and he shouldn't expect it to be), but he's coping and even managed to ride his bike to work yesterday; something he enjoys.

I hope to have a visit with a friend today, snuggle in for a nap, finish a book and putter. It is consume-10-cups-of-liquid day so I'll also be drinking a lot of fluids and slurping on some soup. Try to fit a couple extra beverages into your day (Max, I'm especially talking to you), because it's good for you!

Bottoms up!
Tina

A bump back on track?

2012-01-10T07:12:00.000-05:00

This morning almost feels like a turning point for me on this phase of my cancer journey. I may be completely delusion, or perhaps I'm just letting my hope run rampant, but I sense the paracentesis yesterday bumped me back on the track to getting or feeling better.

Oh, I know it's way too early to tell if that's really true. I can't go by the fact I ate dinner last night and enjoyed a cuppa joe this morning,without stomach isssues and vomiting. I also got a full night's sleep, which works wonders too. But overall, I feel hopeful. Funny, how sucking three litres of fluid from the abdomen can do that to a girl.

Maybe some unexplainable twinge in my subconscious says, "This will help those ninjas tackle those stupid cancer cells. They've been working really hard to slash them to pieces, but swimming through the ascities was slowing them down."

Perhaps I'm just tired of witnessing no tangible results from the chemotherapy treatments, so I'm using faith to project what I want to feel, see and happen - at least in my own mind.

In a couple of days, I may look back on this post and scoff at my optimism, but for today, I'm going to take care of myself, rest and recouperate, and believe.

Tina

Three litres

2012-01-09T16:23:00.001-05:00

A skillful and compassionate doc guided by the reavling illumination of ultrasound can make the world of difference with paracentesis. Oh, and a ample bunch of freezing doesn't hurt either.

Today, I had a great radiologist who removed almost three litres of ascities from my abdomen with minimal pain. I'm far more comfortable and much smaller than I was this morning. While I'm still distended and round, my belly is softer. I should be able to eat more (and keep it in) without my stomach all squashed up under my ribs.

I have a little bit of discomfort at the puncture site and around my ribs where the fluid was pressing pretty hard. I also have a wound that will require dressing changes for at least a few days. I guess the biggest disappointment from this whole procedure is I won't be able to go in the hot tub for a week or so until the hole is completely healed.

I was under the impression the doc would go into a couple of places to withdraw all the fluid he could, but when he waved the magic ultrasound wand over the left side of my belly (the section I thought was full of fluid), he said there wasn't enough to make it worthwhile. So only my upper, right flank got poked with the giant needle.

I have to watch for pain or bleeding, and report to the hospital if I have either. I can't lift anything for a day or two. I couldn't drive myself today nor even walk to the door where my ride was waiting, and needed to be portered in a wheelchair. I even came home, had a huge nap and now am going to take it easy for the rest of the day (and maybe even tomorrow too). Michael is either going to make dinner or we're having take-out. (I'm looking forward to eating whatever we're having too.)

With those three litres of fluid gone (think of a 1-1/2 two litre bottles of pop) from my belly, I'm hoping the chemotherapy can manage to take care of what's left by attacking the tumours that make it their job to produce ascities. Then hopefully, my body can start to return to a more normal state and I'll need fewer drugs for it to function properly. I know I still have to be patient, but I anxiously look forward to those days.

Tina

Have drugs, can travel

2012-01-07T06:37:00.000-05:00

Today, I'm going on my very first overnight excursion since I've was let out of the hospital. Even though I just had chemo on Thursday, and my side-effects and mood may be slightly off, I know I'm always welcome to be just me at our good friends, Diane and Pete's in Port Franks (aka the spa). If I need to lay down on the couch or take a rest, I'm welcome to just do it. I'm I'm slightly grumpy or tired, that's okay too.

We'll talk, play cards, eat good food and laugh. Sounds like a good prescription for recovery to me. And Diane, God bless her soul, takes the spa monniker seriously and plans to give me a kick-ass massage to ease my sore, tired body. I've noticed yesterday, I no longer stand completely upright because of the excess fluid in my belly. The constant stooped stance creates strain on my poor back muscles. But some massage oil and some of Di's serious ministrations should create some relief.

So a brief update before I had off on my tiny adventure:

The stinky chemo farts are back. While not pleasant for my family (and now Di and Pete), that means the chemo drugs are attacking the rapidly producing cells, including the cancer.
I managed to eat appropriately yesterday and did not vomit. Yay!
I got in at least 10 cups of fluid to help flush the toxic chemicals from my kidneys.
I slept seven hours in a row last night! The double lorazepam at bedtime may be the ticket to better shut-eye.

With me being away and my early-morning paracetensis on Monday, you may not hear from me for a couple of days. I know a few of my readers worry when they don't see an update blog, especially after chemo, so I wanted to give fair warning. But I'm not writing because I'm wallowing in side effects, I'm out having some fun.

It's the weekend, take some time to enjoy something enjoyable to you. I'm sure you deserve it.

Tina

Day one post chemo 3A

2012-01-06T08:29:00.001-05:00

Chemo 3A went really well yesterday. The process always seems long and tedious, which is tiring, because I'm stuck in a bed and tethered to bags of chemicals and other fluids. But in the whole scheme of things it all well and according to plan. Compared to the chemotherapy I used to get, it's a much quicker process, taking only about three hours - compared to five or six - from when the first bag is hooked up until the last one is disconnected and I'm sent home.

Since it was my birthday yesterday, I got the private treatment room with a bed, which was a nice bonus. Of course, everyone was also really nice because I was getting chemo on my birthday. But like I said in my blog, getting treatment yesterday is my way of being around to celebrate next year's birthday.

Angie and I lounged around the private room, eating pita chips, pretzels, hummus, soup and chocolate. We had a nice long visit and shared some laughs. The stuck-in-bed nature of chemo gives people a long period to chat without too many distractions, which my sister and I haven't had in a while.

All went well with my PICC line too. No blockages, the blood came out easily and the chemicals went in without incident. I have to say, this mechanism, to which I was very resistent in the hospital, is super handy. I love that needles can be hooked up via the lumens and I don't need to be stuck in the arms. There were many instances during treatments in the past when the nurses would take two or three times to thread the vein properly. That was after the blood draw, so my appendages were subjected to three or four needles in one day, leaving me with huge bruises and tender arms.

My visit with the doc went well too. He made some suggestions on how I may be able to sleep through the night better, including doubling up on the (apparently small) dose of lorazepam I currently take at bedtime. So I'll experiment and see what works for me, since sleep is paramount to recovery.

When we chatted about the vomiting, he expressed hope the paracentesis scheduled for Monday would help create more room so I'd expel my food less often. But he made an interesting comment about how my body would get some nutrients from food before it threw it up. I'd never thought of it that way. Since, most of the time, I only get rid of the last meal/snack I consumed, I may be getting some nutritional benefit from the food and beverages I swallow.

I have paracentesis scheduled with an interventional radiologist on Monday morning. This is considered a day surgery procedure because I check in with admitting at 7 a.m., with the paracentesis scheduled for 9 a.m. I can have nothing to eat or drink after midnight and I need someone to drive me home. I'm so glad Dr. W made these arrangements because I know the radiologist will find the big pockets of fluid and go right for them. He should also be very skillful and won't need to root around in my abdomen like the last doctor. As a result, I should get the relief I need.

I'm also hopeful I've got enough chemo in my system now, it will be able to handle the ascities-producing cancer cells and I won't have this unbearable bloating again. I worry it's taking so long, but I'll discuss that with Dr. W when I have my next appointment with him on Jan. 26.

You may have noticed my numbering system for the chemotherapy in the title of this blog. To explain, I'm scheduled to have six rounds of chemo overall, split into two treatments. I've labeled them chemo A, which happens one week, with chemo B the next week and then a recovery week during the three-week cycle. I just completed chemo 3A and will have chemo 3B next week. Then I'll be half done the overall treatment plan of six weeks. At that point, I want a CT scan to ensure the chemicals are shrinking the tumours and we're on the right track.

If all goes according to past experience, today, tomorrow and Sunday morning, I should feel okay. This morning, I have a lot of energy and feel optimistic. But I need to replenish a lot of fluids today, not only because it's required with the Cisplatin chemotherapy, but because I made the mistake of eating a birthday dinner and cake last night, and then paid for it with a vomitfest overnight. Oh, the things I do. But I'm on the right track, with four cups already in by 8 a.m.

It's strange, but I'm happy when I get my treatments. I feel better for a few days and then have the not-so-bad-comparatively-speaking side effects. But I feel relieved knowing the chemicals are in my system, working away on those nasty cancer cells. Having paracentisis scheduled for Monday is another step towards feeling better. It's action, and the knowledge I'm doing something to fight this beast called cancer that puts the smile on my face. I like moving forward and that's what I'm doing.

Tina

To make it to 46

2012-01-05T05:56:00.000-05:00

Today is my birthday. Happy 45th birthday to me.

My big plan for the day involves heading to the chemo suite so Cisplatin and Gemcitabine chemotherapy cocktails, along with the anti-nausea drugs, lasix and saline solutions, can be pumped into my body. I have an appointment to have my blood drawn, and a date with my nurse and the doctor who's filling in for Dr. W while he's on vacation.

I'll spend the day with my sister, chatting and noshing on the snacks she's packed. I'll probably read my book, take a nap and listen to some music on my iPod.

In the evening, I'll spend some quiet time with my husband and kids, quietly celebrating this momentous event (because every birthday is special).

While it may not be what I'd choose to do on the anniversary of my birth, everything I will do is designed to ensure I can celebrate my 46th birthday. In the grand scheme of the universe, that's all that counts.

Perhaps I can do something just a little more celebratory next year.

Tina

Drink, drink, drink

2012-01-04T08:04:00.001-05:00

I'm gearing up for chemo tomorrow. I've already started to concentrate on getting the required 10 cups of liquid into me by sipping on some chocolately Carnation Instant Breakfast this morning. It not only helps meet the liquid requirement, but gives me all those vitamins, nutrients and protein my body desperately needs.

Next I'll move on to Gatorade, a staple in my diet since I've developed the nasty habit of throwing up. This beverage replaces electrolytes and adds the potassium my body likes to expel when it vomits or develops gastrointestinal issues, which I've luckily avoided over the past week or so. I've taken up a new habit of eating an Activia with a liberal dose of Bran Buds sprinkled in for breakfast and my bowel movements are easier and more regular. My doc said natural ways might tax my already overworked gastrointestinal system, but this seems to work better and be less painful than the meds, so I'm sticking with it.

My homecare nurse also made a suggestion to help my sleep issues, and it seems to be working. I'm now splitting my lorazepam in two, taking half at bedtime. Then when I first wake in the middle of the night, I swallow the second half, roll over and return to sleep. I've done this for three or four nights and I've managed to get between six and eight hours of sleep in a row! Now I'm still waking up at 4:30 a.m. because I'm so tired I fall asleep around 8:30 or 9 p.m. If I could just shift the schedule a little, I'd be closer to my normal. (I know, some of you work really early and this is your usual schedule.)

And yesterday, I tried something else new to see if I could prevent my vomiting in the evening. I noticed most days, I seemed to process my food fairly well (as long as I didn't overdo the amount I ate) during the day, but if I ate dinner, my stomach seemed to say, "Whoa, too much!" and I'd vomit up the top layer of food. So yesterday, I ate my dinner at about 2:30 p.m. and consumed only small snacks in the evening. And I didn't throw up last night for the first time in about a week.

This could have been a fluke or I may be onto something. But I'll continue to experiment to see what I can do to keep as much food in me as possible. (Or should I say, prevent me from vomiting any more than absolutely necessary?)

It's all trial and error. I know some of my stomach problems stem from the fact I'm round and full of ascities. I once again look eight months pregnant. I called my nurse, B, yesterday and she's put in a request with interventional radiology for paracentesis. Not that I really want to have the giant needles stuck in my belly again to drain the fluid, but I'm sure it will make me feel much better. In addition, if the chemo doesn't have to work on drying up this fluid, it can attack the cancer cells with more gusto.

Since my abdomen is full of scar tissue and pockets, the fluid doesn't flow through freely. Usually for paracentesis, an ultrasound technician identifies and marks the biggest pocket of fluid to drain, then sends the patient back to the cancer clinic for the doctor to conduct the procedure. Due to my unique situation, Dr. W worked with interventional radiology so I can have the procedure done by the radiologist, who will identify the biggest pockets via ultrasound and drain them right there. It sounds like the most logical approach with a blocked up abdomen like mine. As a result, I'm hoping this procedure will be far less painful and far more productive than drawing 1 L of fluid from my poor swollen body.

Speaking of swollen, my face is all puffy from the steroids. I have chemo acne and I get flushed red sections covering my cheeks. My nails are brittle and breaking from the chemo. My tastebuds aren't cooperating to savour the full pleasure from food and drink. I get tired and breathless easily and often, and my legs sometimes feel weak from climbing stairs or walking too much. My hair is thinning and I find a good 50 strands in the tub and sink after I get ready in the morning. My skin and lips are dry, my muscle tone is disappearing and I'm losing strength. Yup, I'm a bit of a mess.

But it could be worse. These side effects - and even the ascities and vomiting - are tolerable. Or have I sadly just gotten used to them? They've been worse and I'm hopeful they'll get better. I just need to get more chemo into my body tomorrow so those ninjas can work.

As long as I keep moving forward and finding the good in my days, I'll be okay.

Tina

Changes

2012-01-03T06:23:00.001-05:00

Today brings about some changes in the Bratscher household. The biggest of which is Michael's return to work after being off on leave for a few months. He needed the time off because the stress of my illness, work and all the crap life keeps throwing at us brought him to the breaking point. The stress was physically and mentally affecting his health.

The timing couldn't have been more fortuitous because he started his leave about a week before I had my emergency surgery at the end of September. So he was available to be at the hospital, and then at home, helping me with my care and recovery. He was also able to attend the first four chemotherapy treatments and various doctor's appointments. He's been the laundry king and my awesome helper around the house. Now that I'm stronger, I can handle being alone and caring for myself.

But I know he worries enormously something will happen to me while I'm alone. I try to reassure him that he (and a lot of other people who would spring into action, if necessary) are only a phone call away.

His return to work will add another layer of busyness to the household, especially when the kids return to school next week. Coordination will become paramount again. But we've done it before, and we'll do it again. We'll all just need to accommodate to a new schedule.

But Michael's adjustment will be the biggest because he'll have to adapt to the stresses and pressures of work again. I know he can do it. He's good at what he does and gets satisfaction from doing a job well. So in some ways, the sense of accomplishment he'll get may be beneficial. But he's also a bit of a perfectionist, expecting the best from himself and the others around him, so that adds a lot of pressure and sets some unrealistic expectations. But hopefully, he will continue to remember he can only do his best and then come home to the most important part of his life - his family.

Tina

Hopeful 2012

2012-01-01T07:44:00.003-05:00

Hope is the thing with feathers that perches in the soul - and sings the tunes without the words - and never stops at all.
- Emily Dickinson

As I sit and sip my Hawaiian java on this first day of 2012, I contemplate the concept of hope because I'm confident this young, new year will be better than 2011. I wait for this year's first dawn with optimism, belief and faith good things will come my way during these coming 366 days of 2012.

As I wrote yesterday, my 2011 was a terrible year. So, I have to have faith this coming one will be better for me, my family and friends. Of course, there are no guarantees. Life isn't like that. But I choose to be hopeful, and that works for me.

I'm generally a glass-is-half-full kind of girl. One who examines situations to try to find the good in them. I get dragged down by constant complaining and pessimism, which negatively affects my mood and how I look at the world. So I try to avoid these types of people and situations.

Yet, over the past year, I've discovered holding onto a hopeful attitude becomes exceedingly difficult in the presence of pain, continual disappointment and stress. As a result, I've been far less confident in my health, my ability to beat my ovarian cancer, my returned and/or prolonged good health, if I'll ever feel better again and even in the length of time I've got left on this earth. My mind and body have ventured into some pretty dark places. I've retreated into my own shell and let despair wash over my soul.

I've discovered first hand hope's biggest nemesis is fear.

We must accept finite disappointment, but never lose infinite hope.
- Martin Luther King, Jr.

This quote reinforces, things will not always go our way in life and we'll need to deal with the disappointments it dishes out; while not losing site that an astounding experience or person could be right around the corner. It may be a small event in a sea of grey that brings the sunshine to break up the clouds.

Yet to be truly hopeful is scary because it make us vulnerable. It forces us to open our hearts to the possibilities that can be, while leaving those tender parts of ourself subject to pain if all goes awry. Then we could be left feeling scared, disillusioned, hurt, humiliated and disappointed. No one likes to experience these negative emotions, so sometimes it feels easier not to hope.

Courage is like love; it must have hope for nourishment.
- Napoleon Bonaparte

But on the flip side, believing and allowing hope to blossom can bring joy, love, kindness, serenity, peace and optimism. It can brighten the darkest day. It can give strength, even when all was thought depleted. Hope gives courage. And quite honestly, during my journey with cancer, I need courage and therefore, I need hope. Honestly, I think we all need a little hope.

So do we choose hope? Do our experiences shape our capacity to believe? Are we naturally predisposed to it? Or is it a combination of factors, experiences and choices?

Some people are more hopeful and optimistic than others. We encounter both in our lives every day. There are some on this earth who've been through horrible situations, live in impoverished conditions or war-torn countries, yet seem to be some of the happiest, hopeful people on the planet. Then you'll meet an average Joe, who's lived a pretty fortunate life, who's a down-in-the-mud pessimist.

I believe having hope is a combination of factors - nature, nurture and choice. I'm think I'm naturally hopeful. I also think my upbringing and many experiences in my life fostered this attitude. I also choose to believe. It makes me feel better, it gives me a better perspective on my life and how I treat the people in it. As a result, I give people the benefit of the doubt, I try let go of little slights, I wish friends and strangers well, and believe others are acting honourably and with sincerity. I try not to look for the bad in every encounter and let it affect my day, but hope for good intentions and move forward.

I may be naive, but it makes my life more fulfilling. And really, it's my life for which I'm responsible.

When I'm really hopeful, I experience a bubble-like presence that feels like it rises up and out of my chest. It's like a glowing light that shines from my heart and soul into the world. If it's strong enough, I believe others can get enveloped in its glow and the feeling is shared. It's easy to receive hope from others, but we have to be open to it and be willing to subject ourselves to its vulnerability. But by doing so, we open our hearts to the possibilities it brings.

Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.
- Dale Carnegie

I'm not any under false illusions that just because the calendar page flipped to 2012, all my medical troubles and woes are going to suddenly disappear. I've been running on this hamster wheel a little too long (and hope is not magic). But I am choosing to be hopeful I'll see some tangible results from my treatments. I'm making a conscious decision to have faith in the path my doctor and I have chosen or, if necessary, that I'll be shown a new one to pursue. I have confidence good events are coming my way and I'll encounter more joyful experiences in 2012.

I'm making a conscious decision - even though I know it's not always going to be easy - to make 2012 a more hopeful year, and believe my health, my happiness, my situation will improve. I know I will be far more content with life if I believe.

Hope sees the invisible, feels the intangible and achieves the impossible.
When all my plans and hopes are fading like a shadow,
when all my dreams lie crumbled at my feet,
I will look up and know the night will bring tomorrow
and that my Lord will bring me what I need.
- Gloria Gaither

I believe in hope for today, tomorrow and into 2012. I wish you also have hope, confidence and belief this year will be good too.

Tina

Goodbye you suck

2011-12-31T11:05:00.002-05:00

Good-bye you suck
Never really liked you
- Shiloh

These lyrics blast regularly from the square, black speakers of the new CD/iPod stereo system my daughter, Tara, got for Christmas. It seems to be one of her favourite song selections and I have to say it aptly describes my feelings for 2011 on the eve of its demise.

Overall, this year was the worst of my life. Oh, it started out promising enough with the Olaparib clinical trial drug that was working to keep the cancer at bay. I was feeling great, working on some satisfying projects at work and eagerly anticipating Michael's sister's wedding. I was optimistic, happy, planning, working out and getting healthier.

At the end of May, I learned the ascities, and therefore, the cancer was returning. While the scourge allowed me to enjoy the wedding in mid-June, I started to feel the signs and symptoms toward the end of that month. Then all the crap started - waiting for the new clinical trial drug, its debilitating side effects, enormous stress at work, lots of paracentesis, the drainage tube insertion and inconvenience, emergency surgery, hospital stays, more waiting, all the illness, vomiting, stomach woes and new treatment. Ugh.

As 2011 ends, I gleefully kick it, and most of what it brought to my life, to the curb. While I'm sure I won't be awake to welcome 2012 into my home, I anticipate it will gently join me between the flannel sheets of my warm bed where I'll be curled with Michael to wash its promised goodness over me. I know it's going to take some time for it to fix the mess 2011 is leaving behind, but I'm hoping this 2012 will be a strong, healthy, take-charge year that takes no bull and brings only health and happiness to us all.

I look forward to it.

Good bye 2011, you truly did suck.

Tina

Archangel Raphael

2011-12-30T13:41:00.000-05:00

Yesterday morning, I sat at my desk contemplating my situation. My belly is swelling with ascities (and possibly gas) and, as a result, I wonder if the chemo cocktail I'm taking is actually working. I figured at least this side effect would be much less, if not completely gone by now.

So as I did my angel card reading, these thoughts and worries swirled around in my mind. I asked God to give me guidance and direction. I asked the angels to speak to me. And I pulled one of the two big gun angels: Archangel Raphael.

His description says: "The healing angel is with you, supporting your healing work. Your prayers for healing (for yourself or others) has been heard and answered by Archangel Raphael, the supreme healer."

Drawing this card gave me comfort and hope. As a result, I trust the treatment is doing something to fight the cancer, even if it ultimately isn't the only one I receive. It may be completely psychological, but I'm sure even mental hope and trust can go a long way in the healing process. I believe in God and angels, so the appearance of Archangel Raphael card lifts my spirits.

That can't be a bad thing.

Tina

A bit rocky

2011-12-28T06:44:00.003-05:00

I'm starting to sense a bit of a pattern with these chemotherapy treatments. I haven't examined the little black book where I write all my treatments, side effects, medications and experiences in detail, but my general impressions are:

I feel really quite good the first two days after getting chemo. My spirits are high, I have energy and I can generally eat and enjoy smaller meals. I'm sure the strong anti-nausea medication and steroids really help with this general feeling of well-being.
I start to feel nauseous and have stomach troubles around noon on the Sunday after Thursday's infusion. This also means I start throwing up when I eat too much. Just for the record, the definition of too much can vary by day or type of food. Some of my tastebuds also seem to take a hiatus for a few days. Food and drink just doesn't have as much flavour and therefore, it isn't as enjoyable. While I thoroughly enjoyed Christmas lunch on Sunday, some of it came back to haunt me that afternoon.
Monday seems to be my worst day. I feel tired, dizzy, headachy, bitchy and generally unwell. I try to sleep. I'm generally not good for much. I really shouldn't be around people very much. I also continue to vomit when I try to eat; much to my chagrin.
Tuesday = weak and tired. Vomiting may be also be present.
Overall, mornings tend to be better for me. I have been able to drink coffee and eat breakfast with few issues, but the problems build as the day progresses.

Then I think I turn around and feel slightly better, but the vomiting comes and goes at will. I seriously wish I could control it. I don't like to be able to expel a layer of food practically on demand. Although, I have to admit, when I'm done, I often feel better.

I have this mental delimma: Do I try to eat and if it ends up in the toilet, oh well. I didn't get the nutrients and calories from that food, but I got to enjoy it as I ate it? Or do I avoid eating most things, stick to liquid supplements and Gatorade, so I don't throw up and hope what I do manage to consume gives me the sustenance and energy I need? The first option is actually more fun, but psychologically seems so very wrong.

I'm also still struggling with sleeping through the night. I go to bed around 9 p.m. because I'm so tired, then wake around 3:30 a.m. for the day. I tried a different strategy last night by saving my lorazepam for the middle of the night, hoping its mind-calming properties would coax my body to return to slumber. But when the digits on my alarm clock read 5:38 a.m. and I was still awake, I arose to brew some Hawaiian coffee and turn on my computer. I think I may have to talk to the doc about an actual sleep aid.

To try to catch up on my much-needed sleep, I attempt to nap during the day, but I usually end up lying in bed for an hour or two instead. While this relaxational resting is good, I need actual shut eye. The purple bags under my eyes are testament to my sleep shortage. I also know I need the rest and rejeuvenation for my body and cells as I make my way through this recovery week. It's during this time when my blood counts will drop to their lowest before picking back up.

One good observation I've noticed over the last couple of days is a lack of bruising. By this time last cycle, I experienced nose bleeds and mysterious bruises on my body, indicating dangerously low red blood cell counts. As a result, I had to delay treatment by a week and get a blood transfusion.

So far, I've got some tenderness on my hands, but the quarter-sized purple spots on my thighs, arms and hands haven't appeared. So maybe switching the chemo to Cisplatin and dosing it over two infusions is working to keep my levels in acceptable ranges so I can continue to get my treatments on schedule. Let's pray that's the case because I certainly don't want any more delays.

I have to admit, I'm a little frustrated in the lack of change I'm noticing in my health after two rounds (four treatments) of chemo. I expected the fluid/gas in my abdomen to be gone (and it seems to be bigger than ever). I thought the pressure on my stomach would cease so I could eat and not vomit. I'm a little worried the chemo isn't working - and that scares me a great deal. I don't want this stupid disease to have any more time to grow and wreak more havoc in my abdomen. I need treatment that works. The cancer must die now!

To alleviate this fear, I'm going to ask for a CT scan after my third round of treatment (infusions five on Jan. 5 and six on Jan. 12) so we can get a better understanding of what's happening inside me. Dr. W mentioned testing half-way through to assess and I'm going to follow-up with him to ensure we do just that. I think I could be more patient and cope better if I knew the chemo we've chosen is working. But, if this treatment regime isn't working, let's move on to another one that will. I've had enough.

But for now, I take it one day at a time, navigating the rocky road and all the pebbles, boulders, pitfalls and slippery sections along the way. Hopefully, one day soon, the path will smooth and picking my way along won't be such a physical and emotional feat.

Tina

A new, true meaning of Christmas

2011-12-26T06:26:00.001-05:00

Words cannot even express how overwhelmingly full my heart is from the generosity I experienced this Christmas. This feeling isn't from the unwrapping of the traditional packages and presents, but from unexpected and surprising gifts that came directly from the heart.

As you know I almost died in September. When the doc came out of the emergency surgery and talked to Michael and Angie, the prognosis wasn't good. There was a good chance, I wouldn't make it through the night. If things transpired as he predicted, I wouldn't have been around to celebrate this Christmas nor fight this cancer.

A near-death experience can really add perspective, and drop the things like presents on the list of priorities. Yet, every year, we create a Christmas list and our family goes about diligently shopping for the ideal gift for those we love. This year, I half-heartedly put some items I'd like on a list, but I didn't really want anything because I just wanted to be thankful I'm here, celebrating with those I love. Michael took it one step further.

He knew what he wanted for Christmas. He wants to be with me, not only for this celebration, but for many more to come. The only way he knew he could help with that goal was to make a special request of those who buy him gifts. Instead of requesting a new set of guitar strings or parts to fix his bass guitar, in lieu of a new movie or a light for his Kobo ereader, he let his heart and love for me lead.

Instead of items, he asked those who buy him presents for a donation to the Run for Ovarian Cancer. He's donating all the money that would have gone to his gifts to those dedicated researchers who are striving to find better ways to treat this God-awful disease. He said he wants me to share his life, and the only way he knows how to do that is to give to those who are working to keep women like me alive.

I cried and cried. My heart swells with pride because of his love and generosity. He now has a big chunk of money that'll go to Team Tina and the Run for Ovarian Cancer. Unbelievable. I love him so much.

Then I received another generous surprise on Christmas Eve from my parents. My mom came into a small inheritance from a distant relative overseas during the past year. I was thrilled for her because as retired folks, my parents are now individuals who live on a budget. They've also worked hard all their lives and deserve to enjoy travel, a new car, fun activities, etc. (In other words, they need to spend that money they've worked all their lives to collect and have fun. It's theirs, spend it.)

But mom and dad generously decided to share a portion of that inheritance money with my sister and I. My mom handed me a cheque and said use it to fulfil an entry on my bucket list when I'm done treatment and feel better. I was astounded - and yes, I teared up again. This special gift gives me something to dream about as I fight through these next eight chemo treatments and their side effects. It provides my brain extra incentive to encourage the ninjas to work so I can do something fun to celebrate when the crap is all done.

So, while I enjoyed the usual Christmas celebratory festivities - the great food, the good company, the squeals of children's laughter, watching my children's face glow with delight at their presents, the packages I received (and feel slightly guilty about) - my true gift is the spirit of love and generosity I feel from these unexpected events.

Michael, you're an amazingly, loving, generous man. Thank you to all who listened to his request and gave him donations instead of presents. Thanks to my parents for sharing - when they certainly didn't have to - so I can dream of tropical beaches or foreign countries. And thank you for the other gifts I did receive. I am a very lucky woman.

I have been blessed to experience a differerent side of the true meaning of Christmas this year - and I'm overwhelmingly grateful.

Tina

Christmas joy

2011-12-24T05:33:00.000-05:00

It's Christmas Eve (day) and I'm sipping on Hawaiian coffee, contemplating the day and smiling inside.

Today my family heads to celebrate Christmas in Wallaceburg with my parents, sister, brother-in-law and nephews. The house will be a beehive of activity and wafting with the awesome smells of turkey, potato dressing, potato croquettes and the accompanying fixings. Can you tell I'm looking forward to the food?

I'm also looking forward to the company. This year, more than ever, this season isn't about the gifts for me. I couldn't care less if I had one package to open. I want to spend time with my family and enjoy a delicious meal cooked by loving hands.

My sister went over to help my mom get ready yesterday and I felt jealously nostalgic. I wanted to be there too, peeling potatoes, baking cookies, singing Christmas carols and hanging out with my family. Those chores, done together while listening to and singing carols always help get me in the spirit. The chemo, tiredness, naps and illness have diminished my ho-ho-ho-ness. Unfortunately, it doesn't feel very much like Christmas to me.

But I'm deteremined to change that today. I will not let this Christmas slip by with a sense of mediocrity. That's why I brewed the special coffee we bought for Christmas for this morning. I'm also going to do my best to be cheerful and Christmasy today (even if I have to sneak in a little nap to do so). I get to be with people I love and celebrate our family, being alive, hope, joy and the birth of Jesus.

Of course, it won't hurt to hear the squeals of joy on the little kids' faces when they open up their toys.

One more sleep until the big man in red makes his appearance. Yup, that's tonight!

Merry Christmas everyone.

Tina

Up and at 'em

2011-12-23T04:58:00.000-05:00

My slightly-swollen eyes slid open this morning to alight on the red, glowing numbers of 3:38 on my alarm clock. I inwardly groaned and rolled over in the warm, flannel sheets to try to return to the dreamland. But my mind had found the meandering stepping stones of my thoughts and decided to start traversing them instead of crawling back into the silky, grey crevice that led to sleep. And now, here I sit.

But I'm going to take advantage of this early-morning (bad) habit my body's adopted and head to the 24-hour grocery store to pick up my last minute items before the hoards descend. I only need a few things, but I'd rather gather them while the aisles aren't packed with shoppers.

So after a quick update about my chemo yesterday, I'll donne a baseball cap and head out the door.

Treatment was quick yesterday; done in three hours. I guess when you don't need blood nor a discussion with the doc about all the problems, the infusions themselves don't take too long. I sat uncomfortably in a chair because the beds were all occupied. But I ended up visiting with three different people, so I wouldn't have been able to sleep anyway.

The first is an old friend from high school who works at the hospital. I'm happy she dropped in for a quick visit and a Christmas hug. Then I ran into a friend from my cancer support group. I didn't know she was undergoing treatment so it was really beneficial to catch up with her situation. Then I met a woman I hadn't seen in a couple of years, who has breast cancer. It was good to see each one of them and each discussion gave me something to think about - friendship, love, optimism, hope, despair, longing, absence, etc. - which was good.

I did get my nap when I got home. I crawled into MY bed and dosed off for about 1-1/2 hours. It was heavenly.

Michael, bless his soul, just got up to go to the grocery store with me, so now it's time to get up and at 'em.

Psssst, did you know it's only two more sleeps until Christmas!

Enjoy your Friday.
Tina

Tired, yet hopeful

2011-12-22T06:22:00.000-05:00

I have two main complaints with my side effects right now: tiredness and gas. And if these are the biggest grievances, I'm really quite lucky. I have to take these good signs and wrap myself in them like the warm blankets they give you in the chemo suites. I need to relish the good stuff, because I was mired so long in the bad. Like I've mentioned in a previous blog, if you focus on the positive, it diminishes the power of the negative. So that's what I'm going to try to do.

This morning, I'm grateful I'm just tired and gassy. I'm experiencing less nausea and vomiting. I'm not dropping into the deep, dark, Dementor-filled well with chemo. I have not experienced neuropathy (loss of feeling in fingers and/or toes) nor taste changes, and I still have my hair. Okay, it's thinning significantly - and in the end the presence of hair doesn't really matter to the fight - but I am thankful its strands still grace my head and keep it warm.

I'm hopeful these fairly minor side effects are par for the course for my entire treatment regime, but I'm not holding my breath. I won't get my hopes up, only to have them dashed when some new symptom pops up. But I'm going to roll with it for now, hope the chemo today doesn't put me down for the count for my Christmas celebrations and keep moving forward. I'm being hopeful.

The other day, I received a request for me to write about hope. To be honest, it threw me for a loop because I haven't been feeling that emotion very much lately. The pummeling cancer has subjected me to over the last few months has squashed many optimistic feelings. Yet, the comment got my brain churning to deteremine how I feel about hope right now and how it fits in my current journey, and I'll blog about it in the coming weeks.

But that request, getting treatment, feeling a little better and perhaps the imminent approach of Christmas has me feeling a little more hopeful over the past couple of days. It's amazing what a seed of an idea can generate.

As for the tiredness, it doesn't help my system is all screwed up. I'm regularly waking between 3:30 and 4:30 a.m. and staying up for the rest of the night. I try the meditation tricks and deep breathing to no avail. My mind kicks on its motor and proceeds to process life, love and what to make for dinner tomorrow night. Even when I try to nap during the afternoon, it won't rest, contemplating to-do lists and mundane, life items. So I either end up falling asleep early or going without. The chemo makes me tired and the lack of sleep doesn't help, so I'm in a losing situation.

But I'm headed to those warm blankies at the chemo suite and perhaps with some classical music on my iPod I may be able to get a little shut eye as the chemicals are infused in my body today. Some cancer-kicking ninjas, a warm blankie, a little nap and the company of my soul mate. How's that for hope?

Tina

Bottoms up

2011-12-21T05:42:00.000-05:00

'Tis the day before chemo
And my goal for the day
Is to chug back the liquid
And make it all stay

The drug sheet insists
10 glasses is the min.
So I'll raise up my glass
And tip several beverages in

Carnation breakfast for lunch
With a cold water chase
Some toasty broth mid morning
For that quota to erase

Solid food, while yummy
Takes a backburner today
To get in those liquids
For treatment on the way

I need the protective sloshing
And lots of cleansing pees
For another chemo shot
To protect my precious kidneys

So raise your glass with me
Perhaps even a beer
But let's all use the liquid
To toast Christmas cheer

And death to cancer cells

Tina

Emotional effect of words

2011-12-20T08:14:00.002-05:00

As a writer, one of the biggest compliments I can receive is feedback on how I string my words together to form a message. Lately, I believed I'd lost the ability, drive and/or energy to create compelling blog posts. When reviewing some of my earlier posts, I'd marvel I actually wrote a particular piece or came up with a clever turn of phrase.

But over the past few months, I've felt my writing has been so mundane, solely updating you on doctor's appointments, medical jargon and side effects. Part of this journey involves all that necessary information because it explains the day-to-day realities of my journey with cancer, the toll it takes on my body and the unsavory side effects, but it easily becomes tediously boring.

In my brain, I blamed the weariness of my long trek with my unsavory companion, cancer, and I lamented my loss of creativity. I felt uninspired, and more importantly, uninspiring.

Then yesterday, out of the blue, I was able to create an engaging blog about my unhappy dance with cancer. The words easily flowed from my fingers as I sat at my keyboard, so they'd obviously been percolating in my subconscious.

I haven't received a lot of feedback from my writing recently, which could stem from a myriad of reasons ranging from reader busyness, the lack of inspiring writing or the inability to post on blogspot, but I did hear from four people about yesterday's post via comments, emails and Facebook. The range of reaction surprised me a little.

Two were extremely bothered by my post, and the sadness and weariness it conveyed. Two marveled at my writing ability, and how I could eloquently express so much emotion and lucidity. I'd hoped for the second response, but the first one made me feel sombre.

When being honest, I can't predict the reaction of others. Nor do I want to assume what emotions my words will dredge up. But, along with one of the messages expressing sadness, one friend expressed the overwhelming belief I will beat this and live to step lightly in a dance of a different kind.

Not knowing how my readers will respond to my writing is part of the joy of blogging: I can put information, thoughts, feelings and very personal details online without witnessing the reaction. I don't see the pain, disappointment, joy, relief, inspiration, uncomfortableness nor sadness in their eyes. It allows me to be more honest than a real conversation because talking about some of these topics in person would be extremely difficult. (But that doesn't mean actual talks wouldn't be welcome either.)

More importantly, people don't need to share their reactions with me and can read from the comfort of their computer, processing the information and emotions by themselves. A blogging audience is not compelled to provide any feedback unless they want to do so. Being anonymous is part of its appeal.

But as I started today's blog, I emphasized feedback - both complimentary and constructive - is invaluable to a writer. I can only assess my work, understand how my words affect others or improve myself if I absorb the reaction of others. So thank you to those who do respond. I hope it helps me be a better writer.

In a way, I feel I should apologize when I make others feel uncomfortable with my writing, but that would be ingenuine. From the beginning, my goal has been to be genuine to the truth of this journey. So I will continue to write as I know best (and incorporating any constructive feedback from you), and hopefully, at least every once in a while, I'll be able to craft an interesting and inspiring blog that makes you sit back and revel in the truth of life.

Tina

Cruel dance

2011-12-19T07:18:00.002-05:00

This is year three of my attendance at this party, with its energy-sucking dances and unusual refreshments. I must unequivocably state, the third time is not the charm when ovarian cancer is the host. In fact, this repetitive soiree is getting uncomfortable and I'm tired of the frenetic activity required to keep up with the myriad of activities and mental gymnastics.

Currently, I'm locked in my third tango with cancer. This dance partner has a steel-trap grip - no spaghetti arms on him - and the steps have grown more complicated than before. I struggle to keep up, often stumbling, regularly falling and increasingly uncertain I can understand what it's going to take for this malevolent puppetmaster to release his grip and let me rest.

Every day seems to bring some new requirement or complication too. I didn't get enough sleep, my stomach is roiling with nerves, my too-high dance shoes are pinching my toes, the food I tried to eat isn't sustaining me through the rigeurs of the moves or my body collapses in protest. I'm tired and frustrated, both mentally and physically.

Despite all the taxing requirements placed on it, my muscles are starting to atrophy. I've lost a lot of weight, but I've lost a disturbing amount of muscle. I am not toned at all and the cottage-cheese effect severely dimples my arms and legs. It's disgusting and embarassing. I've always been relatively fit and this muscular breakdown depresses my already challenged psyche. Being this weak, also does not make me an equal partner with the demon cancer during his cruel fete.

While the first two turns around the punchbowl in 2009 and 2010 were difficult with the side effects, mental dark-basement excursions and (somewhat) weakening body, this time is completely different. It's much, much harder.

The preparations also started earlier when I received the dreaded invitation to re-join the party in May. The ascities showed up in late June. The attempt at a different dance - the Regorafinib - produced horrific blisters and, possibly, internal damage resulting in my huge abdominal scar and two-week hospitalization. As a result, the date of the actual soiree was postponed until mid-November. Now I feel I'm stumbling, trying to catch up to an event that started months ago, in a compromised position.

I know attending this type of excursion three years in a row will justifiably exact a toll on a person, but I hate it. The first two tangos seemed so much more manageable in comparison. This party seems like it's going to go on for far too long, with horrifically discordant music, too-loud laughing and a sneeringly arrogant dance partner.

I long for a reprieve, where I can pack those torturous dance shoes - or better yet, throw them away - and head home to rest and recover. But I know I have to endure, because as much as I'd like to throw my sickeningly-sweet punch in cancer's face and leave him alone on the dance floor, that will allow him to win. That is just not an option.

Tina

So far, so good

2011-12-18T06:01:00.000-05:00

If yesterday can be used as an indicator of how I will feel next Saturday, I may be able to enjoy Christmas after all. I ate fairly well, had energy and was in an okay mood.

In fact, I felt energetic enough to do some baking. A little girl in my house asked about Christmas cookies a few weeks ago and I told her we'd have to see how I felt. To be truthful, I also don't feel it's the ho-ho-ho season without a few cookies and squares around the house. While we cut back significantly, the house smelled delicious yesterday afternoon - and we have baked treats to enjoy as well. Of course, I was exhausted yesterday evening, but I only did it to myself.

I had a few side effects yesterday - a slight ringing in my ears, minor dizziness and some diarrhea (again) - but nothing unmanageable. But I did throw up through the night; much to my chagrin. I don't think the giant potassium pill I forgot to take until bedtime agreed with my chicken and after-dinner cookies. My stomach protested and I ran for the bathroom around midnight.

I know with my chemotherapy treatment again on Thursday and my blood levels dropping as the ninjas do their work, I'll have to take it easy and rest a lot this week to be able to enjoy the Christmas festivities next weekend. Luckily, I have wonderful families who are hosting the events and they'll ensure I don't overdo it. I also have everything almost ready, so I can focus on me and staying strong.

Keep working little ninjas and die cancer die!

Tina

Saturday morning check in

2011-12-17T05:39:00.000-05:00

I've learned some of my regular readers worry when I don't blog the weekend after a treatment or medical intervention. To allay some of this anxiety, I'm providing a little check list on this snowy Saturday morning.

I felt good yesterday. I got my last Christmas gift picked up and the rest of the presents wrapped. I feel prepared for the big day now and that makes me feel good.
I was extremely tired by the time evening rolled around. I took a nap on the couch and then curled up in my bed at 9 p.m. Of course, I woke at 4 a.m. again this morning so I'm going to have to try to stay up a little later so my mornings don't start quite so early.
I managed to keep all food and drink in my body yesterday, with no vomiting nor diarrhea. Yay! While most of my day consisted of a liquid diet to ensure there was enough room for fluids, I was actually hungry for dinner last night and had a couple chicken wings and potato wedges. I also treated myself to a few cookies. I miraculously managed to consume nine cups of fluid throughout the course of the day with no stomach pain or issues.
The stinky chemo farts are back. The bright side of that smelly situation is my bowels are working and pushing the gas around. It's also a very normal chemo experience, which makes me feel slightly relieved.
While I should keep up copious amounts of fluids, the 10 to 12 cup guideline is done.
The anti-nausea drugs have been working well. I started feeling slightly sick around dinner last night, but the little pills quelled the feeling. Now I'm done the big gun, the Granisetron, which costs a small fortune, but hopefully I've expelled enough of the Cisplatin from my system it won't be an issue.

This blog isn't fancy, but now you're up-to-date. I have no idea what today will bring, but after I'm done my Carnation Instant Breakfast (with its two cups of fluid), I'm actually going to indulge in a coffee. The java will cancel out the hydrating effects of the instant breakfast, but I think it may be worth it so I can indulge in my little Saturday morning ritual of coffee and the newspaper. I'll work on replenishing the fluids later.

Tina

3/12 - Ninjas at work

2011-12-16T06:14:00.003-05:00

We deployed the battle-ready ninjas yesterday morning and now they're invading my body, searching for and fighting those nasty cancer cells. After blood tests, a visit from Dr. W, and discussions about my vomiting, diarrhea and ascities, we continued on with the chemotherapy. Yay!

I was extremely relieved since I thought my body's attempt to purge all the liquids I'd consumed could prevent treatment. Despite feeling awful yesterday, another delay would have reduced me to a puddle of tears.

Instead, extra IV fluids accompanied the chemo yesterday and I received three bags of potassium, which my blood tests revealed was extremely low from the diarrhea. I also have some giant potassium capsules to take over the next couple weeks, which is fine by me if it keeps me on track with my regime.

Yesterday, I was exhausted. After only four hours of sleep the night before, weakeness from all the explosive bowel expulsions, and stomach and abdomen discomfort, I could barely function. I hopped up on the bed in the chemo suite, snuggled under the warm blankets and settled in. The entire process from blood work to final flush took about five hours, during which I only slept about 30 minutes (chemo suites are very noisy places).

I was happy to get home, rest in my own bed for the rest of the day and by about 9 p.m. I was sawing logs. Of course, when my alarm clock glows at 4 a.m., something in my head thinks it's time to wake up. I tried convincing my body to settle back into the snuggly covers, but to no avail. My mind was churning and I was awake. Ugh.

Since I've never received this chemotherapy combination before, I have no idea what to expect for side effects. The chemo nurse yesterday said Cisplatin tends to produce more nausea and stay in the body longer than Carboplatin. I have a stronger anti-nausea medication that I hope will take care of that nastiness. I guess I'll find out how I react over the next few days - and deal with whatever comes my way.

I also must try to swallow lots of fluids today to flush the drug from my system. Cisplatin can cause kidney damage and therefore the cleansing liquids are vital. I learned yesterday, I'm only getting half of the high-dose Cisplatin at a time, which mandates the 10 to 12 cups of liquids. Since my dose is split between two weeks, I figure if I consume about eight cups of fluid, I should be good. I can't make myself sick trying to fit it all in because that strategy entirely defeats the purpose.

Dr W and I also talked about the ascities expanding my abdominal area. While it's not horrific right now, I visibly look about six months pregnant with my rounded belly. Since I have so much scar tissue and diffferent pockets of fluid in my abdomen, it's hard to use paracentisis to remove an amount necessary to provide good relief. So, if we decide I need to be drained again, he's investigating options with interventional radiology.

With paracentisis, the patient is usually wheeled down to radiology where the technician finds the biggest pocket of fluid, marks the spot with a magic marker X, tells the individual to lay still on the stretcher and sends her back through the hospital to the cancer centre for the procedure. During the transport, loops of bowel float in the fluid, the patient gets bumped or moved and the ideal spot may not be quite so ideal once the (painful) procedure starts.

I asked if perhaps the paracentisis could be done in interventional radiology where the doctor could use the ultrasound and needle(s) at the same time to find various large pockets of fluid and drain them. I think, if paracentesis becomes necessary, that would be my best option. While this isn't usually common practice, Dr. W said he would talk to them about this possibility.

He also talked about putting in another temporary drain; much to my chagrin. But as he pointed out, it would also only capture and drain the fluid from the one area into which the tube would be placed. In addition, we're both hoping the chemo starts to work on drying up the ascities and this entire problem goes away on its own.

So again, I revert to my mantra of one day at a time. But I am hoping to find some bursts of energy so I can get the rest of my Christmas wrapping done. While I was lying in bed not sleeping on Wednesday night, I worried if I experienced complications, I wouldn't be ready for Christmas. Now I feel compelled to get the last gift I've ordered picked up and everything wrapped so I don't have to worry and can focus on managing the side effects and getting better.

I know if I don't get all my preparations for Christmas done, it's not the end of the world, but given that I may not feel well, may not be able to eat much and have so little control over how these festivities will proceed this year, I'd like to be able to control something. Having everything wrapped and ready to go (oh and a list for the ingredients for Christmas breakfast) seems manageable, especially since I have a week. I'll do what I can and rest in between. Sounds like a plan to me.

Tina

Liquid shortage

2011-12-14T23:54:00.001-05:00

I couldn't do it. I did not manage to consume 10 to 12 cups of non-caffeinated, non-alcoholic liquids today. I forced myself to swallow between eight and 10, but I am now in a lot of pain, want to throw up (heaven forbid I lose what I have in my system) and can't go to sleep.

My big mistake was probably eating lunch. I dined out with Michael, my mom and sister at Swiss Chalet and heartily enjoyed part of a festive feast. But solid food in my system takes too long to digest and crowded out the room needed for my required fluids.

Before June, I easily swallowed 12 to 16 cups of water, coffee, pop or juice a day. I loved my ice water and would sip it all day long at my desk. This drinking task would have been easy six months ago. But since I started filling with ascities and having all my stomach issues, it's almost a chore to quaff four cups of fluid. How sad; especially when the liquids are needed as part of my treatment.

To top it off, my bowels are acting up tonight. I have yet to find the right balance with the constipation-fighting medication I'm on, so I'm suffering cramping and explosive results requiring frequent jaunts to the bathroom.

It all means I'm not getting the sleep I so desperately need.

I don't know what the nurses will say tomorrow when I confess I didn't meet the mark on my liquid consumption. The information sheet the accompanies the Cisplatin drug sheet specifically indicates I need the 10 to 12 cups of fluid or I need to call the triage nurse at the cancer centre. Apparently, it's that important. I think the Cisplatin can be very toxic and the liquids are necessary to flush it from my body.

Hopefully, my efforts will be close enough and they'll be able to pump me up with extra fluids via my I.V. tomorrow. I'm also praying my blood counts have improved enough to get the chemo.

Then on Friday, when I need to meet those high liquid requirements again, I'll abstain from food. Liquids all the way, baby.

Cross your fingers, say a little prayer or hope for good karma that all proceeds smoothly tomorrow, I get my chemo, it starts to work quickly and I hop on the road to getting better.

Tina

New friends

2011-12-14T06:54:00.001-05:00

Yesterday, I attended a wonderful Christmas lunch with some fabulous women. The hostess, I met through the Run for Ovarian Cancer, and she's become a valuable friend since that day, always offering support and prayers as I struggle with my cancer journey.

At lunch yesterday, she offered delicious food, tasty drink, homemade Irish cream and introductions to two of her dear friends. Like me, these two women are ovarian cancer survivors. They make me hopeful because they're both around their five-year remission mark. In the cancer world, getting to five years without a reoccurence is outstanding. Some doctors say if you've been disease-free for five years, you're cured of the cancer.

I'm so happy for them. I'm also thrilled to know women who are keeping this stupid disease at bay and living life cancer-free. It gives me encouragement to keep battling my cancer, especially during tough times, because perhaps the next treatment will work and I too can live in remission for a long(er) period of time.

It was an honour and so much fun to be part of this group of women. I'd like to get to know them all better in the coming years. As you can imagine, with four talkative women at a lunch, conversation flows quickly. I'd like to know more about the cancer stories of these fiesty survivors and get to know all three women better as friends.

You can never have too many good friends.

Tina

Positive vs negative

2011-12-13T07:19:00.000-05:00

I'm a human being, and as such, I still have the same petty, stupid, ridiculous emotions everyone else experiences. The problem is, when I act irrational and get aggravated about an everyday slight or action, I feel I'm wasting time. I have a terminal illness, and as such, I shouldn't be using the hours I have left on these negative feelings.

I'm going to use an example from last night (sorry Michael) to demonstrate. His sister and brother-in-law stopped by to visit and show us some wedding photos. They stayed about an hour and a half. During that time, Michael went to pick our daughter up from a friend's, where she was working on a school project. Michael decided to walk to this rendezvous with our dog, missing at least half an hour of the visit. Our dog does need the exercise. Walking is generally a great idea. But it annoyed me he chose to deek out on our company because I thought it was rude.

Anyone who knows me understands I generally turn inward and grow quiet when I'm upset. So conversations were short last night and I went to bed shortly after the company left. I'm better today, the whole incident has blown over in my mind. There's often no sense hashing it out because sometimes I just need time to come to terms with the fact different people have varied priorities.

Like the time when Michael and I were cleaning the house in preparation for a dinner party and he thought it was a good time to defragment the computer. No one would see it. It didn't need to be done that minute. Yet it took up time I thought should be spent eliminating the grime from the visible areas of our house. Argh!

Since I've been so sick, these little disagreements - that are a normal and healthy part of life - bother me. I feel they waste valuable time and good, emotional energy between me and the people in my life, so I shouldn't feel this way. But getting cancer didn't eliminate the irrational, emotional side of my brain that doesn't always make sense. It also didn't make the world all sunshine and rainbows where people always see eye-to-eye and get along. So I will continue to struggle with experiencing normal feelings and the sense they're chipping away at precious time.

When you feel time may be limited, it also hard to come to terms with and accept relationships and feelings can't always be lovey-dovey, positive, sweet, tender and co-operative. I want (and feel) all of it should be good, making cherished memories, having valuable experiences. But people are people. We have good and bad days. All our emotions and reactions aren't positive, nor are they the same as those around us. Differences make us special, unique and interesting to one another, but that means we aren't always going to agree.

On the positive side, cancer allows me to let go of more slights, disagreements and negative emotions than I have in the past. I try to focus on the good in others. I value my friendships and relationships more. I also try to determine the root of an action before reacting to it. There's a lot of stress with an illness, which can often be the source. I'm also far more contemplative than I was in the past, giving people the benefit of the doubt and delving into the personal reasons for words or actions. Time is short and holding onto stupid grievances is a waste of time and energy.

As I told a friend the other day, it's important to surround yourself with people who give you energy and happiness, and eliminate (or at least cut back) on the time you spend with those who suck your spirit. There's way too much negative drama in some people's lives, so I try to avoid it. It does me no good.

Surround yourself with life-sustaining people because they're the ones who fill your energy reservoirs. We can all use lots of good, powerful energy in our lives.

Tina

Blood Friday = Energetic Sunday

2011-12-12T05:50:00.001-05:00

I whipped up French toast for breakfast, completed some Christmas shopping, wiped up the bathroom, baked some banana bread (with my beautiful daughter), scrubbed the kitchen sinks and stove, perused cookbooks and created a Christmas baking list, and picked up various items around the house. All before the London Knights' game aired at 2 p.m.

Yesterday, energetic Tina was back. The benefits from the blood transfusion on Friday finally hit, and I stopped dragging my butt around the house. While my speed isn't up to typical pace, I'm not hobbling along like I'm 80 years old. (That's never good when you get in crowds who are Christmas shopping and are racing along the aisles. For the record, I get so aggravated with those people and now I'm one! Sheesh.)

I didn't even feel the overwhelming urge for a nap yesterday. During the past week or so, I've often hit a point when exhaustion made me at least lay back and close my eyes; even if I couldn't sleep. This is a refreshing change.

I know it's not going to last, but I'm going to enjoy the extra energy while I can. I get chemotherapy on Thursday, which will knock me backwards physically. But I need the cancer-killing chemical cocktail because the ascities is starting to be a big, round, uncomfortable problem again. I look five months pregnant with my distended and rolly belly. We need to release the ninjas to divert the tumours from making this annoying fluid.

So, I'm going to enjoy the coming three days, accomplish as much as I can to prepare for Christmas, squeeze in some social time, and stock up on the much-needed liquids and other supplies I'll need for my next round of chemotherapy. Then I can roll up my sleeve on Thursday afternoon knowing I can concentrate on getting through whatever side effects the next dose doles out. Since the treatment regime changed, I have no idea what to expect, but I'll just take it one day at a time.

Here's to enjoying the next three days.
Tina

Bloody Friday

2011-12-09T06:08:00.000-05:00

This morning, I get life-boosting blood pumped into my veins. The red liquid will give my body the cells it needs to feel better and recover for chemotherapy next week.

I've given blood many times in the past and always felt good about helping someone who needed this red substance, of which I had an abundance. I was happy to roll up my sleeve and lay on the cot for a little while, knowing my blood could help an accident victim, a surgery patient or anyone else who needed it. Of course, the cookies doled out by the Canadian Blood Services volunteers afterwards were an added bonus.

I needed two pints of blood during my hysterectomy and bilateral salpingo oopherectomy surgery (the one where they removed all my womanly parts and the cancer) in 2009. But I was, thankfully, deep asleep during that whole procedure.

This time I'll be awake, watching the red liquid flow into my veins. Someone else's red liquid. To tell you the truth, while the concept of blood transfusions are brilliant because of all the good they do, the idea of someone else's blood being pumped into me freaks me out just a little. I know it's screened and cross matched to my blood type to avoid any allergic reaction. It's also very carefully checked for all diseases and contaminents. But it's just the whole idea of it being someone else's blood.

Of course, I'm being an idiot, because I get chemotherapy pumped into my body, which are toxic chemicals that can definitely cause damage to my organs and wreak havoc on my systems. I take handfuls of pills to stave off nausea, vomiting and constipation, and they also have potential side effects. So I'm being squeamish about the blood, which is designed to provide only good after-effects. I need to suck it up (like a vampire) and get over my qualms about the blood once belonging to someone else.

I'll go roll up my sleeve this morning and gratefully accept the blood a generous soul donated. I whisper a thank you to the anonymous person who took the time to give.

Tina

Food and drink

2011-12-08T08:10:00.001-05:00

We take the ability to eat and drink for granted. Sipping on our fragrant morning beverage, noshing on a decadent piece of cake, licking our fingers as some of the ingredients of our noon-time sandwich come slipping out, guzzling down the refreshing water to quench our thirst or slicing into a perfectly cooked piece of tender chicken. Mmmmm.

Over the past few months, when sustenence often refused to remain in my body, I've gained a new appreciation for food and drink. I value, more than ever, the energy-giving properties it provides. I also love the taste, texture and social aspects of dining or sharing a coffee.

I managed to retain most of what I ate and drank yesterday, and I feel better today. The pounding headache is gone and I have some energy. I will still need to rest often and be very selective with my activities, but at least I don't feel like laying in bed, lounging on my couch or soaking in the hot tub are my only viable options.

My home care nurse visited me last night and I complained about my high pulse (102 bpm). She said my blood is trying to pump quicker to give me the oxygen it needs. Since my hemoglobin is so low, my oxygen supply is low, that makes me tired and short of breath. She said the transfusion tomorrow should really help me feel better. I look forward to that.

Tina

I vant your blood

2011-12-07T14:00:00.001-05:00

If you're one of those generous people who roll up their sleeves and donate blood: thank you. If you're type O positive, an extra merci beaucoup to you. I'm grateful because I need a blood transfusion on Friday to bring my hemoglobin and platelets up to an acceptable level. They're so low, my chemo must be postponed a week.

My appointments at the cancer clinic did not go as I'd hoped yesterday. In fact, the treatment train went careening of its track. My chemo and its timing changed, and I also have new drugs to help prevent vomiting and promote bowel movements. I know the changes are probably for the best, but I was so hoping to release the next wave of ninjas, so I'm disappointed. Now they have to continue training for another week before attacking the tumours.

The first minor roadblock I encountered was during my blood draw. Both lumens in my PICC line were clogged and needed a special drug to clear them. So my five-minute stop at the chemo suite to give blood turned into an hour-long stay. But they're both running free and clear now so they'll be ready for both my blood transfusion and chemo.

During my appointment with Dr. W, he suggested we switch the Carboplatin chemotherapy to Cisplatin. So I'll be getting Cisplatin and Gemcitabine on both weeks one and two, with week three as a treatment vacation. Apparently these two drugs have a synergistic effect - they work well together - so he's recommending their combined infusion both weeks. As well, splitting the dose over two weeks would decrease the potential side effects of kidney and inner ear damage, and increased nausea.

The drug sheet for Cisplatin says hydration is very important and I must drink 10 to 12 one-cup servings of fluid (water, broth, clear soup, clear juice, etc.) the day before and after treatment. In fact, if I can't drink this much fluid, I have to call my nurse. It's that important.

Which is why we have to get this vomiting under control. I haven't been keeping food nor fluids down, and as a result, I feel terrible. My mouth is sticky, my lips are dry and I have a terrible headache. Between being dehydrated and my low blood counts, I am weak, lethargic, shaky and generally feel crappy.

So Dr. W prescribed more Dexamethasone and a drug called Haldol to help control the nausea and vomiting. I took my first doses about 6:30 p.m., but then I vomited four times between midnight and 6 a.m. Hopefully, my body absorbed them before I went on my puking rampage, but there's no guarantee.

I took them again this morning and. knock wood, so far all the Gatorade, water and soup I've consumed has stayed put in my stomach. So hopefully these new drugs are starting to work.

Dr. W also prescribed, Lactulose, a synthetic, non-digestible sugar used to treat chronic constipation. It's a sickly sweet syrup, but if it works, I'm all for it.

I'm so bummed my blood counts aren't cooperating on my very first treatment! This does not bode well for the future. My platelets were 91 (normal is 150 or higher, but may drop as low as 75 during chemotherapy without serious harm). I have unexplained giant purple bruises on my body, blood in my mucous and tiny red and purple dots on my skin. All signs of low platlets.

My hemoglobin was 76. Normal is between 120 and 130, but can drop as low as 80 without serious harm. I'm below 80! Those with low hemoglobin are considered anemic. According to the London Regional Cancer Program website, anemia can cause difficulty concentrating, tiredness, feeling dizzy, headaches, shortness of breath with very little activity, sensitivity to cold/feeling very cold, pale skin, less interest in social pleasure, and feeling down or irritable. Check on all those symptoms.

Dr. W said we may consider using a drug called Eprex to help prevent anemia if I continue to have problems in the future. But of course, using it comes with its own set of precautions. I'll cross that bridge if and when I get to it.

To top it off, my white blood cells are 2.5 (normal is 4.5 to 10) and my neutrophils are 1.0 (normal is 2.5 to 7.5). So my blood work sucks all around. In the meantime, the blood transfusion is the way to boost my hemoglobin and platelets, help me feel better and prepare my body for chemo next Thursday.

I hate this. I hate feeling sick and weak. I hate curling up in a ball on my bed and disengaging from the world, but I feel so terrible, that's all I want to do. I'm so disappointed my treatment is delayed. I'm frustrated because I'm filling with ascities again. I feel so disheartened right now.

Hopefully the blood transfusion helps. I hate being like this.

Tina

Presenting the list

2011-12-06T07:28:00.000-05:00

Hi ho, hi ho
It's off to the doc's I go
Today I present
How things went
With the che-e-e-e-mo

This morning, I have appointments at the cancer centre to give blood and see Dr. W. My blood tests will verify if all my levels and cells are within the acceptable range for me to have chemo again on Thursday. I know they need to check my platelets to make sure my blood is clotting properly because I experienced nose bleeds, and unexplained bruising and red marks late last week.

The bruising is just one of the experiences I'll need to recall when I'm with the doc and his nurse, B, this morning. Some of the side effects I've had over the last three weeks include:

Nausea, stomach pain
Tiredness
Weakness/shaky
Pain under right breast (like gallstones)
Flushed cheeks
Paleness
Flu-like symptoms (day 3 post Carbo/Gemcitabine treatment) - aches, restless, nauseous, headache, flushed, muscles
Abdominal cramping/difficulty with bowel movements
Acne
Blood pressure on high side
Bloody mucous in nose (starting four days after Gemcitabine treatment)
Unexplained bruises and red spots
Headaches, stiff neck
Irritable, sensitive to sound (everything is amplified and loud sounds hurt my ears/head)
Jabbing, lower abdominal pains
Vomiting up about 25 per cent of what I eat and drink when I take Dexamethasone
Vomiting up at least 75 per cent of what I eat and drink when I am off Dexamethasone

The list is long, but gives a fairly clear picture of my life over the past three weeks. I have no idea if this is going to be my typical reaction to this chemotherapy combination. I suspect my pre-existing stomach problems, the after-effects of my surgery and the overbearing presence of some of my tumours are contributing to or exacerbating the severity of some of these side effects.

I have no idea what action Dr. W will take based on my list of complaints. I don't know how or if he can help me. All I can do is present my reality to him and rely on his medical expertise and advice. Hopefully, he can find ways to alleviate some of the symptoms and make my life a little easier.

Regardless, the magic words I want to hear are, "You're all set to get chemo again on Thursday."

Let's release the next wave of ninjas.

Tina

Perspective

2011-12-05T09:04:00.003-05:00

I know my blogs haven't been very cheery lately because of how ill I've been feeling. While the writing is honest and part of documenting my journey with this beast called cancer, it gets tiresome to be negative all the time. With Christmas drawing near, I thought I'd switch my thoughts around on this Monday morning and remember things for which I'm thankful.

This list isn't exhaustive, nor is it in any particular order:

My wonderful and handsome husband who rubs my back, does extra chores around the house, lets me rest and loves me unconditionally.
My kids, who must be scared and confused watching their mom be so sick, and yet do their best to help me and understand.
Family and friends, near and far, with all their support - calls, food, emails, visits, massages, prayers, etc. You guys rock.
Christmas dinner at my Aunt Carol and Uncle Vince's on Saturday - Yummy turkey, mashed potatoes, gravy, dressing, corn, good company, lots of hugs and family. I felt pretty pathetic and lethargic, but my entire family was understanding and supportive. It was so good to see everyone after such a long time too.
Roast beef dinner and playing cards with good friends last night - I'm proud to say I cooked a roast exactly the way I wanted, with an herbed crust and pink in the middle. It was delicious. And it was awesome to share it and then play cards with Di and Pete. (The awesome massage Di gave me helped enormously too.)
I get chemo on Thursday. Now, many people would lament the arrival of an upcoming treatment because it means side effects and misery. But I want this cancer to go away and to get some semblance of my body/stomach back, so I need to shrink these tumours. It's sad I'm looking forward to Thursday. I'm hoping this next round of chemo means relief, so I'll be able to enjoy Christmas.
I'm grateful I can go in my hot tub. I love it, and the warm, pulsating waters help ease the soreness in my body. Theoretically, it should also keep my gastrointestinal systems moving and increase healing circulation.
And speaking of my GI tract, my bowel movements have become more regular over the past couple of days. I'm thankful for the cleansing. The discontinuation of the steroids probably helps because they can be constipating little buggers. Even though I'll get more Dexamethasone again on Thursday with chemo, at least things will be moving as they should before I start the cycle again. (Yup, I'm talking about being thankful for poop. Little things can become so significant sometimes.)
My side effects with this chemo haven't included (at least not so far): skunky mouth, intense bone aches, the deep dark well of misery (aka the dementors), tingling in the hands and feet, hair loss and chemo brain. Some may appear on subsequent treatments, but they haven't been present so far.
Feeling good - It may be an hour or a day, but I have segments of time when I actually feel pretty good. I'm hoping those times lengthen and become more common. For now, I'm thankful when I can sit and think, "Yup, I feel okay."

I know, except for the first few, it's not a typical list, but it's reality for me today.

Even though I desperately wish my health would improve, I'm sometimes jolted back to reality when I hear about those who are worse off than I. This morning, I learned about a woman who has stage IV lung cancer with horrible options and a bad prognosis. Hearing her news made me stop and think my situation could be worse. It also made me remember my health does have great potential to improve.

It's so easy for me to get caught up in my own misery and be impatient though. I'm living it; surrounded by the sensations 24/7. I'm only human. I get tired, scared and worn down. But, I have to remember it's not all bad. That's why thinking about that woman and creating my thankful list this morning was so important. There are good things in my life and I need to focus on them.

I know I ask this regularly, but I think it's important: Take a minute today and remember three unique things in your life for which you're especially thankful.

Tina

Sliver of patience

2011-12-02T08:30:00.001-05:00

I'm now on recovery week from chemotherapy, with treatment starting again next Thursday. I'm happy to have the time to clear up some of the small side effects I've experienced and gear up for the next round of treatment.

Part of me wants more treatment now to shock the tumours and beat them into submission more quickly. This is where patience is paramount because I know I need to rest and recover so my body can do its job throughout all the treatments. It needs to be strong to give the ninjas the best environment to continually attack the cancer.

I've been taking advantage of my good days; those when I'm feeling energetic. This week I did some Christmas shopping, wrapping, organizing and planning. I feel accomplished I got so much done. But I'm now feeling the effects of all that activity. I woke with a headache and a lethargic feeling. As a result, I'll probably have to scale back the to-do list I planned for today. I have to keep telling myself I still have lots of time to get all those jobs done.

I know the extra week of steroids contributed to my energy burst. They stimulated my mind, helped me eat and made me feel much better. But my prescription for those little white pills ended on Wednesday. Yesterday afternoon, right on cue, my stomach hurt from eating lunch. And Bitchy Tina is hovering right around the edges of my personality, taking exception to noises, comments and just about everything. She's certainly no pleasure to be around; not even for me. My poor family bears the brunt of this ugliness.

I also continue to be plagued by slow bowels. I pleadingly coax poops from my system every couple of days with all the medications and a recommended laxative, but I'm no where near as regular as I should/used to be. So, with the ability to eat, but no system cleansing movements, I eventually encounter a lack of space in my digestive tract. And so, once again, I've had a few vomiting issues.

On a positive note, my belly is still relatively soft and not extremely distended by ascities. And the warm, swirling waters of the hot tub help ease my aching muscles. Thank God for the small miracles.

A few other minor side effects have made an appearance over the past week. I've started getting blood in my nose and when I scrape or cut myself, the blood doesn't clot as quickly. I've also had a few mysterious bruises and marks appear on my body over the past few days. I've also noticed the appearance of little red dots around my body. The blood vessels in my face also break more easily, especially when I've been vomiting, giving me a flush appearance.

I'm guessing my red blood cells aren't quite up to snuff, which is a common side effect of the chemotherapy. Hopefully, they'll rejeuvenate before my appointment with Dr. W next Tuesday, so he can give me the green light for treatment on Thursday. The last thing I want is a delay.

It's only the beginning of official treatment, but I'm feeling the effects of its ups and downs more quickly. I know I'm complaining again, but it's so hard to feel good, be hopeful and then get plunged back down into the gunkiness.

The emotional roller coaster ride also makes me feel a bit like Dr. Jekyll and Mr. Hyde. I want treatment to kill the cancer, but I don't want to go through the side effects. I love the steroids because they make me feel well and help me eat, yet I'm scared of them and what they may do to my body. I love to eat, but when my bowels don't work, I hate throwing up. I get nausea, vomiting and stomach pain when I don't take the steroids. I feel energetic. I feel tired. I am happy and pleasant. I'm grumpy and impossible. Argh!

I think I need to dig a little deeper in my bag of tricks to find a sliver of patience for today. I'm sure a few deep breaths and repeating my "one day at a time" mantra will come in handy.

Tina

Introspection and improvement

2011-11-30T05:56:00.001-05:00

When on any journey in life, it's important to stop every once in a while and take a status check: Where are you in life? What's going well? What isn't so hot? How can you change the parts you don't like? Where do you want to go from here?

But it's really easy to get caught up in work, family responsibilities, activities, chaos and the lives of others (because face it, some people have WAY more drama in their lives than can possibly be good and it's so easy to get sucked into it). But if you don't take the time to examine you, how can you possibly be getting the most out of your life?

While I usually completed this introspection a couple times a year before my cancer diagnosis - especially when I was feeling unsatisfied with some portion of my life - I find I do it more now. My realistically shorter lifeline gives me a smack-in-the-face realization there's only so much time, and I can't continually put things off until tomorrow. But if we all think about it, there's no time guarantee for any of us.

Self-introspection is hard because it makes us examine aspects of ourselves we may not like and face realities we'd rather keep buried. If we're really serious about the exercise, it also forces us to make changes in our lives.

We can't keep doing the same things and expecting different results.

My blog helps me sort out many of these thoughts and issues. To talk to all of you, I have to figure out what I'm going through. But I also see an awesome social worker, who raises different questions and prompts me to think about siutations in new ways. I generally walk out of her office with a couple of new things to comtemplate. Sometimes these ideas make me look at my world slightly differently, and other times they prompt change and action.

But in the end, it's all good. These exercises help me make those very important steps forward. And one of the best things about working with a therapist is the work can - and should be - all about you. It's your issues and how you can change things in your life. It's about figuring out what will make you better, happier, more fulfilled or healed.

A recurring theme over my last couple of sessions has been trying to live my life to the fullest against the struggle of feeling sick for so long, and therefore feeling stagnant. I know I've touched on that topic in my blog a few times. It's hard being hopeful, planning and enjoying events when it's a struggle to get up and put on a brave face every day. Yet, I feel I'm wasting time. So I struggle with that paradox.

I'm also trying to deal with the notion of slipping in and out of my normal life. I have a life where I'm busy with work, activities, friends and engagements, from which I disappear for long stretches of time about once a year. That gets a bit harder each time because of the lack of social contact a normal life gives me. With each bout with cancer, I also find I have less time and energy to be social and engaging, which makes me feel guilty I'm not as present with the lives of my family and friends. The entire experience also leaves me more isolated.

But please don't take my last comments as throwing shadow on my amazing support system. My village is amazing and I am so lucky so many wonderful people choose to be part of it. That means there are lots of different people to step in, hold my hand, offer words of comfort and ensure I'm doing okay. God bless you all.

As you can tell from my rambling writing, I still have some thoughts to sort out from my social worker session yesterday; but I'm comforted by the small forward momentum in my brain. I like working on myself to make me better and to improve my life. We've only got one to live, so we need to make the most of it.

Tina

Oh how I've missed you

2011-11-29T06:20:00.000-05:00

Yesterday, I was finally given the green light to slip my poor, aching body back into the warm, swirling waters of my hot tub. Given all the incision, drain, puncture and needle sites on my abdomen are closed, I can once again take advantage of the pulsating and therapeutic jets on my muscles.

It felt SO good. "Oh, my little hot tub, how I've missed you."

Since my pigtail was inserted on Aug. 2, I've been banned from submerging my body in water. So there's been no swimming, baths or hot tubs for me over the past four months. While that may not be a big deal to some, the limitations made me sad and a bit cranky. Now, I do need to ensure my PICC line stays dry to prevent infection, but I have a thick, plastic sleeve that's doing the job perfectly fine. I've also ordered a special cover off the Internet that's supposed to allow me to swim too.

While I need to initially limit my time, even a 20 minute soak twice yesterday untangled knots in my back and shoulders. I felt more relaxed. I slept better. And I'm hoping the jets will keep those stomach and bowel muscles stimulated and encouraged to keep working.

I've always been a water person and so I'm back in my element. I'm looking forward to my soaks today. Ah!

Tina

3 a.m.

2011-11-28T05:33:00.000-05:00

A person should not wake up for the day at 3 a.m. The world is dark and the house is quiet. Typically, when I wake at such an early hour, I mentally cheer at all the additional minutes of sleep before my alarm clock jolts me to reality.

But, as you guessed, I've been awake since 3 this morning. Mind you, I was curled beneath my cozy, flannel sheets, exhaustedly settling in last night at 9 p.m. Yet, even with my early bedtime, I needed and expected to get more than five hours of body-healing, mind clearing, restful sleep.

Oh sure, I tried to coax my body into returning to restful slumber, but just before 5 a.m., I gave it up and climbed out of bed. Now I'm sipping a tea, noshing on a muffin and contemplating activities for the day. I have lots I could do, but I have to balance those chores out with the rest my body so badly needs to recover from chemo on Thursday. A little work, a little reading sounds just about right.

I'm also already planning the optimal time to nap. I'm sure I'll be ready to plunk my head back on the pillow mid-morning; shortly after the kids go to school.

As a cancer patient undergoing treatment, I need to let my body lead and go with the flow. In many ways, we should all follow that same advice, listening to our bodies more and being kinder to it when it protests. Believe me, this great advice is far harder to follow some days than others.

Tina

Brutal

2011-11-26T06:54:00.006-05:00

Horrifying
Painful
Less than productive
Awful
Rooting
Torture

Those are a few descriptions I'd use to describe my paracentisis yesterday. It was probably my seventh time having this procedure, which involves sticking a giant needle in my abdomen to draw out excess ascities. This was by far the worst. It was also the least productive with only 1L of the liquid siphoning off.

Dr. W asked a colleague step in because he had no time in his schedule. I remembered this doctor when he performed this procedure on me a couple of years ago and recalled uncomfortable results. The little, optimistic hope I had for a smooth and relatively painless experience was shattered shortly after the process started.

I'm not going into all the gory details, but suffice to say, this doc made me cry. I don't usually produce waterworks during medical procedures. I moan, breathe deeply, grunt and even produce some little wails, but I'm generally pretty stoic..

I staved most of the tears until everyone had left the room, but some sprang to my eyes during the needle exploration in my abdomen. It's tip scraped my bowel a few times, and the entire process felt as though the doc were on a reckless treasure hunt. When I was alone, I broke down from the pain and hideousness of it all.

In fact, I'm still sore today and the nurse who watched the procedure (and was flinching) told me I'd probably be bruised for the next few days. Luckily, the chemo seems to be working and fluid production decreasing, so I shouldn't need paracentisis again.

On a positive note, my blood pressure and pulse both dropped, and I can see a decrease in the roundness of my abdomen. But I'm not sure it was worth it.

Tina

Slide into the electric

2011-11-25T08:37:00.000-05:00

Tzzzzzzdt, tzzzzzzdt.

That's what my brain felt like last night as I tried to go to sleep. An electric sensation gripped my brain from the steroids and my thoughts were traveling a million miles a minute. I laid in the dark, waiting for the lorazepam to kick it, willing my body and mind to calm down. I was singing songs, tapping my fingertips on Michael's shoulder and making him laugh at the absurdity, writing a blog, thinking about Christmas shopping, dreaming up meals to eat, etc. It was a bit chaotic.

I tried deep breathing, imagery and prayer; but I'd focus on that specific mind-calming activity for about 60 seconds before my mind cavorted to another oh-so-important topic.

Yup, the hexagonal, white steroids are doing their job inside me. Besides the few hours of sleep I lost, I'm thrilled to report I kept dinner and breakfast down, I'm eagerly anticipating my next meal, my stomach doesn't ache, I have enthusiasm for the day and the energy to actually accomplish something. I've been up since about 5 a.m. checking online specials, doing some Christmas shopping and creating items for my to-do list. I like this Tina because it's far closer to the real me - and I will take advantage of it as long as I can.

The only side effect from the Gemcitabine so far (and it IS still very early) is some abdominal pain. I'm attributing it to the ninjas completing their dueling job with the cancer cells. Go my stealthy, black, warriors.

Check out my cute little ninja. He was a gift from my friend, Laura.

So, while the steroid high lasts, I'll enjoy life and sing. Speaking of singing, now you too can reveal in the awesomeness of the Team Tina Twinkle Toes as they performed Don't Stop Believing at Syncapalooza. So amazing.

(But because I'm not technically challenged enough to embed the video in the blog, here's the link.)

Enjoy!
Tina

30 min + 4 hours

2011-11-24T19:10:00.001-05:00

At 7:45 a.m., the cancer centre is pretty calm and quiet, which is exactly how I like it. I thought, I'd be in, get my Gemcitabine chemo and be on my way before the place filled up.

I checked in and filled out my "how ya doin'?" questionnaire that now accompanies every chemo treatment. On it, I mentioned I'm upchucking every day, can't keep food down and am blowing up with ascities (not in those exact words, of course). My complaints instigated action by my chemo nurse.

Usually, I'd only need blood tests to ensure my red and white blood cells counts were high enough to get my next dose of chemo; but she drew extra vials to check my electrolytes, which could be out of whack from all the vomiting. She also called Dr. W, who visited me in the chemo suite.

After assessing my situation, he ordered a series of abdominal x-rays to rule out a obstructed bowel. "Oh shit," I thought, "just what I need." (And yes, pun intended.) Thank God, no obstruction!

To help me eat, Dr W prescribed a week's worth of Dexamethasone. Now, you know my love/hate relationship with this steroid, but I really miss eating and I'm sure he'll watch me carefully. In fact, Dr. W wants to see me again in a week. I'm also getting ascities drained via paracentisis tomorrow morning. The big needle in the abdomen to remove the fluid is an awful procedure, but it provides such relief. Hopefully, this will be the last time before the chemo starts to work on drying it up.

At one point during the morning, Dr W talked about the possibility of postponing today's chemo treatment. He asked me how I felt about that possibility. My reaction in my head was, "Are you freaking kidding me? Give me the chemo. Let's kill these bastards." To him, I said, "I'd like to get the chemo."

With the clear x-rays, I finally started getting the Gemcitabine about 2-1/2 hours after I checked in. After a quick infusion, Michael and I walked out of the hospital after noon.

With a Dexamethasone on board, I got ambitious with lunch, happily munching down on loaded spinach salad and a tuna salad croissant. But I didn't really give the little white pill enough time to work and I saw it all again mid afternoon. Ever the trooper (or glutton for punishment), I tried again at dinner with a delicious spinach and cheese ravioli in blush sauce. Two hours later, it's still staying down. Fingers crossed, it'll stay there.

Tonight, I feel pretty good. I have no idea what the next few days will bring in terms of side effects from the Gemcitabine alone, but I'll deal with them as they come because this treatment is what I need. I'm thankful for that.

Tina

First to me

2011-11-23T18:38:00.001-05:00

They may have placed second in the competition, but they're first in my heart.

Every year, London Life holds a fundraising "concert" called Syncapalooza. This extravaganza involves individuals dressing up (usually crazily), and lip syncing and dancing (and other funny anctics) to a song; much to the delight of the ticket-buying audience. All to raise money for the United Way. It's always fun, but this year it made me cry.

A bunch of my friends put together a performance in my honour, singing and dancing to Don't Stop Believing. They sported their Team Tina yellow t-shirts, hammed it up, played air guitar and shook their patooties around the stage. I loved it!

Now I know many of those who were up on that stage wouldn't normally participate in Syncapalooza, but they did it for me. How amazing is that? I get chills just thinking about all the support and love I have. This wonderful performance reinforced that for me. I know it made me and Michael cry, and I saw a few other tears as well.

Check out the photo from after the performance with me sitting proudly in the middle.

You guys were amazing and in my books you earned first place. Thank you from the bottom of my heart for the outpouring of love (and all the great hugs).

Tina

Climbing up

2011-11-23T07:40:00.001-05:00

I'm slowly making my way back up from the basement of chemo. I started feeling better yesterday and hopefully that bodes well for improvement again today. Hopefully tomorrow's treatment doesn't kick me back down the stairs. I'm looking forward to being semi-productive and a little more social.

As a side note, I obviously miss eating because I dreamt about a bacon cheeseburger last night. Sheesh.

Tina

Ka-chunk

2011-11-22T11:37:00.000-05:00

The laces slipped through my tenuous grasp and the shoes clattered noisily on the floor yesterday. I felt awful - shaky, stiff and sore, with flu-like symptoms and a wicked headache. Yup, the other shoe dropped.

Yesterday morning, I had a follow-up appointment with the surgeon who supervised my care during my stint in the hospital and it was all I could do not to cry while waiting in the cancer centre. I was that uncomfortable. When I did see him, it was for five minutes. He said the appointment was to ensure I didn't fall through the health care cracks and assure me I can see him again, if need be. Great. Thanks. Then I went home to bed, where I spent most of the day.

I'm sure I'm feeling so crappy because I'm getting dehydrated. I can't drink much and my body isn't really able to process much food. Even though I had a Boost in the morning, some soup at lunch, a Gatorade-type drink throughout the day and an Ensure at night, I threw it all up last night. I'm quaffing back the anti-nausea medication, but they don't cut it like the steroids. But I'm afraid to take the steroids (and my prescription is done anyway). As well, the ascities is building and pressing on my abdomen, which allows little movement in my poor tummy.

Things should improve once the chemo attacks the tumours and the ascities, but I'm so damn tired of waiting to feel better. Hurry up already! Of course, I'll mention all these happenings to Dr. W when I see him next. He may have some great idea for making things easier on me in the meantime.

If this round of chemo is any indication (and there's no guarantee it is because of all my other complications), days 3 and 4 seem to be the worst ones for side effects. I feel better today with only a headache, stiff neck and back, and bloating pain from the ascities as my main complaints. My goal today is to rehydrate myself with Gatorade and supplements, and not worry so much about eating. As much as I love it, food is not my friend right now.

Then on Thursday, I'll go get another cancer-blasting dose of chemo. Hopefully, each one will make me feel better and move me towards my goal of beating this stupid disease.

Tina

Footware slip

2011-11-21T07:20:00.003-05:00

Yesterday, the shoe I'd hoped wouldn't drop slipped from my grasp and I'm now using my fingertips to hold onto the laces. And so far, today isn't looking very good either.

Sunday morning started fine, with a cheery mood, a nice cup of coffee and a piece of peanut butter toast (the crunchy kind so you have lots of tactile excitement for the tastebuds). I read my book and lounged around, showered and dressed.

We went out to Costco - a place I HATE on Sundays because of the throngs of crazy people - to get the new Looneyspoons Collection cookbook signed by the authors. It was there the withdrawal from the steroids kicked in and I became extremely grumpy. My bowels were also working with the help-me-poop medication to cause cramping, heat flashes and gaseous movement, and nausea danced around my belly.

Then last night, I made the mistake of eating dinner. Without the steroids helping the nausea, dinner revisted me about an hour after consumption. And then I threw up again during the night. I'm afraid to eat or drink this morning, and I've got a pretty orange anti-nausea medication on board to try to help settle my out-of-sorts tummy. But I know I need the nutrients and especially the hydration, so I will have to try a supplement or something shortly.

While these side effects aren't as bad as previous chemo treatments, I doubt I'm done yet. They do make me want to crawl up in a hole, aka a nice soft bed, somewhere and ride them out. I'm not good company nor do I make friendly conversation. So forgive me if I'm slow getting back to you or out-of-sorts. I just have to take it one day at a time and do the best I can.

Tina

Waiting for the shoe to drop

2011-11-20T08:21:00.001-05:00

I'm trying not to be pessimistic, but I honestly find it hard to believe these side effects are the biggest, baddest ones to be doled out by this chemotherapy combination. Quite honestly, they're inconvenient but not onerous.

I fluctate between having good energy, initiative and racing ideas to being lethargically tired and unable to concentrate beyond my bed and a book. I've tried to nap during the down times, but I believe the steroids coursing through my system stymie the mind-sinking phenomenon necessary to drift into dreamland. Luckily, I took my last dose of the small, hexagonal white pills last night, so perhaps my next nap time will be more productive.

Yet, the bonus of the anti-nausea medications, Dexamethasone and Ondansetron, is the quelling of my nauseous stomach, which allows me to eat. I can enjoy small meals, reaping the nutritional and social aspects of partaking in the sharing of food. Now, I still reply on nutritional supplements (and I'm thankful to the generous friend who supplied me with some) for some of the meals I can't quite stomach and to provide me with the balanced nutrition I need and may not necessarily get with the foods I crave.

Ironically these same little pills that encourage me to ingest food into my body are backing up my bowels, despite regular quaffing of the stool softening and poop-inducing (nice technical term, eh?) medications of Colasce and Sennokot. I've got lots of uncomfortable cramping and movement in the bowel region, but no relief.

And the steroids slightly veered me towards to the path of Bitchy Tina last night. Maybe it was tiredness or lack of a good bowel movement, but I felt more irritated than normal by dinner time (a meal, I incidently skipped).

Other than those semi-mild side effects mentioned above, I've experienced flushed cheeks, restless (but not painful legs), dull eyes with small pupils, a minor, gall-bladder type pain under my right breast and possibly, a small dulling of my tastebuds. Of course, I also have the discomfort of filling up with ascities, which luckily isn't major right now.

But based on my previous, horrible experience with chemo, I'm waiting for the other shoe to drop. Day three (which would be today) used to drop me into a deep, dark well of depression, bone pain and an out-of-body experience. Even thought Dr. W said the side effects tend to appear right after treatment, and both he and the chemo nurse said they were generally pretty mild, I'm afraid to believe it. I don't want to trust this is the worst and then be sucked into the hellish vortex. That's why I'm keeping an open mind, taking small trips, making minimal plans and sticking pretty close to home over the next few days.

But if this is the worst the Carbo/Gemcitibine chemo combination is going to throw at me - with positive, cancer-shrinking results - I'll be thrilled. So keep working my little, black ninjas with the same stealth and pain-free efficiency you've employed so far. I'll send in some Gemcitibine reinforcements on Thursday.

From where I sit right now, the day lays before us with promise. We should all do what we can to get out and enjoy this beautiful Sunday. It's a good day to be alive.

Tina

1/12

2011-11-18T07:17:00.000-05:00

The first batallion of lethal, black ninjas got the green light yesterday and were infused into my body. They're sneaky warriors, hiding in the two bags of clear chemotherapy fluid. Now they're lurking in the shadows in my abdomen, of which I'm sure there's many, and sneaking up on those rotten tumours to eradicate them. I hope this first army of super soldiers is large and strong enough to distract the cancer enough so it doesn't have time to produce ascities.

Yesterday's infusion went surprising well. In comparison to the six-hour days I used to endure, my approximately three hours at the cancer centre - waiting, paperwork, set up, infusion, etc. - felt short and sweet.

With the carboplatin/paclitaxel combo I previously received, the paxiltaxol took three to four hours alone to drip into the IV. Then I had to have additional drugs to prevent reactions to it. I got Dexamethasone, Rininidine and Benadryl via IV before the chemo drugs were even started. And because I had an adverse reaction to the taxol on the first dose, the rate of infusion was slowed too. When I had this chemo combination, it was necessary to pack a lunch, drinks, snacks, cards, book and patience.

But with the Carboplatin/Gemcitibine chemo I received yesterday, the IV consisted of saline, Gemcitibine for 30 minutes, saline, Carboplatin for 1 hour, saline and done.

It was also easier because I have a PICC line. No rooting around for veins to cooperate. And because I've had lots of trouble drinking lately, I'm sure I'm dehydrated, which shrinks veins more. So if the nurse would have had to thread a vein for the chemo, I'm sure it would have been an ordeal and involved multiple stabs.

In addition, when the patient has a PICC line, the Gemcitibine doesn't have to be mixed with saline to lessen it's harshness on the veins. So I got the straight drug, which was quicken infusion too.

It was also much quicker to have this treatment done in London instead of Hamilton, which is an 1-1/2 hour drive away. We live a short 20-minute drive to the London cancer centre, so it's in for the chemo and out to do something else with the rest of the day. Not that I really did anything too exciting because I was tired. I laid down but unable to sleep because I was wired from the steroids. Weary but wired seems to be the main side effect so far.

It's ironic, but last night I told Michael I felt better than I had in about a week. I don't know if it's the steroids calming the nausea and making eating a bit easier or the removal of the drainage tube, which I seriously think was starting to make me feel really bad. I'd also like to think the chemotherapy is already starting to work, but that's optimistically unrealistic.

Unfortunately, my belly is swelling with fluid accumulation. It's quite visible now and could get to be a problem. But hopefully, those ninjas will work really quickly and only one (or none) paracentisis draining will be necessary. Of course, I'll keep an eye on it, because it's gets extemely uncomfortable and is hard to hide.

In those first few seconds upon waking this morning, I felt great: No pain or discomfort. But once my body fully awoke, I noticed a slight headache and some minor stomach pain. I also still feel tired despite a decent night's sleep. But if that's the extent of my side effects right now, I'm rocking. But I suspect, I'll feel some more as the day(s) truck on.

Since this is an entirely new chemotherapy for me, I don't know what side effects to expect. I also don't know which I'll still have because of the carboplatin, which also made up part of my last treatment. Will I become a super sniffer again? Will I produce the most smelly, room-clearing farts imaginable? Will Bitchy Tina make an apperance from the steroids I'm taking, even though the dose is much smaller? Will I sink into a deep, dark well? I don't know. And these are the experiences that don't appear on the side effects sheets themselves. I wait and see.

I do know I'll feel tired and will be susceptible to outside infections. To me, that sounds like a great reason to do little cocooning with some books, my bed and a big bottle of hand sanitizer.

I want to say thank you to everyone for all your messages with good wishes yesterday. It's awesome to know I have the support of so many people who love me.

Tina

Bye bye tail

2011-11-16T17:53:00.001-05:00

It's been a constant companion for over a month now, but I've finally lost my tail. While that statement may be apropos for a crime novel, it seems a bit odd pertaining to an average person. But then again, I guess I'm not that average.

My tail was my drainage tube and it easily slid out amid a gush of fluid when the doc pulled on it this morning. The stitch came out a couple of days ago, and it was slowly easing its way out of my body anyway, but I wanted the doc to take a look at the area. So I went to the removal appointment this morning instead of having my home care nurse or Michael yank the sucker.

Since the tube wasn't in far enough, I wasn't getting any drainage yesterday. And the stuff that filled the reservoir the day before was bloody. I was concerned about the blood or the chance of infection, especially since the reservoir was starting to smell really funky, but Dr. L (the one who did my surgery at the end of September) didn't seem concerned.

I'm leaking copious amounts of fluid from the hole and need to change the bandage covering it every few hours, but I don't have the annoying appendage to drag around with me any more. Nor will it take up the space between me and Michael in the bed. But it's amazing how I've adapted to its presence because I went to grab the tubing when I got up from a chair the afternoon, only to happily realize it isn't there.

Now my main concern is fluid accumulation in my abdomen. I already know I'm fuller than I should be, but hopefully the ninjas will quickly work to stop the ascities production with the very first dose of chemo tomorrow. My appointment is at 8:15 a.m. and it only takes about 2 hours, so I'll be done by mid morning and ready to face the side effects. I just want to get this process started.

So think of me as you sip your morning beverage tomorrow and root for those cancer fighting ninjas in the chemo. Die cancer die!

Tina

Tumbling

2011-11-15T08:39:00.002-05:00

As you can tell from my posts over the last few days (maybe even weeks), my situation is sliding downhill. In discussions with the homecare nurse last night, Michael says he's really noticed a big change in the past few days. I feel awful almost all the time, and that affects both my body and spirit. I also feel weaker and less able to cope with the physical and emotional aspects of this disease.

And I hate it!

I threw up again this morning, even when I hadn't eaten anything. But I had plenty to vomit, which leads me to believe my body isn't processing food very quickly. I'm upchucking at least every other day, but most of the time it's when I've eaten too much. Now I guess it could be whenever my body feels like it. Sheesh.

I'm praying once I start chemo on Thursday, it'll start to dry up the ascities, stop the pressure on my stomach and make me feel better. I hope it happens quickly, especially since after much circular discussion among various doctors at the hospital yesterday, I now have an appointment to remove my drainage tube tomorrow. While I'll be happy to be rid of the inconvenient - and potentially infection causing - tail, I worry about filling up with fluid. I still drain approximately 300 mL of ascities via that port daily. Once the tube is gone (and before the chemo starts to stop the fluid production) my abdomen will swell and I'll need paracentisis, which is drainage via a long needle and vacuum containers. And it's as yucky as it sounds.

I feel like a stone, sliding down the side of a cliff. The top of the embankment wasn't very steep and the movement was slow. But now the slope's increased and so has my tumble into the abyss. Let's hope for a leveling off soon so I can stop this decent, regain some strength, stamina and focus.

Luckily, through this entire downward spiral, I have the amazing support of a wonderful husband. Difficulties will drive some couples apart, but Michael is right here with me, rubbing my back, cleaning my puke, changing my dressings, holding my hand and stepping up in every way possible. You never know how your partner will react when faced with this kind of situation and I'm so blessed to have one who will care for me - in sickness and health.

I laid in his arms this morning after he rubbed my neck and shoulders to get alleviate a painful headache and knew he'd protect me. I felt weak and yet I could lean on his strength. That's unconditional love and I'm so lucky to be abe to count on it (even when I don't feel I deserve it) from my soulmate.

Tina

Grumpy

2011-11-14T07:34:00.000-05:00

Toward the end of last week, I realized I'm tired of being in my own body. I'm weary of my stomach, abdomen or neck hurting. I hate that I can't enjoy food and throw up semi-regularly. I'm frustrated and therefore grumpy. I don't have a lot of energy, initiative or enthusiasm. I'm certainly not a pleasure to be around.

On Friday, my drainage tube stopped working properly. We thought it was a flaw in the reservoir and jumped through hoops to get another one, only to discover that it's not the equipment, it's me. We think the tube emerging from my abdomen has stretched the skin around the insertion area so much, air is escaping and preventing the vacuum from sucking the ascities from my belly. While, I still captured about 300 mL in the reservoir from Friday to Saturday, the flow is now minimal. I woke this morning with ascities all over the front of my pajamas. And I'm uncomfortable. We'll call the interventional radiology department today to see if someone there can help remedy my situation.

If I'm tired of being in my broken body, I can only imagine what those with strokes, MS, Parkinsons or ALS experience. My situation is nothing compared to those individuals. But my physical woes are enough to break me down. I'm so tired of feeling bad. I hope it improves quickly when I start treatment this week.

Tina

A different path

2011-11-11T10:41:00.006-05:00

Yesterday, I returned to the fork in the road with its choice of two different paths to follow. On Tuesday, I'd chosen one road to journey down, but I second-guessed my selection after only a couple of steps and re-traced them to return to the fork and weigh the two options again.

After conducting Internet research, writing pros and cons lists, and talking with Dr. W, Michael and my sister, I've decided which path to follow for my treatment plan. In my gut, I think it's the way I wanted to proceed, but my logical mind required a thorough assessment of both options before making my decision.

I've chosen to receive the Carboplatin and Gemcitibine chemotherapy combination (as opposed to Carboplatin and Paclitaxel, which is what I've been treated with twice in the past). I asked a bunch of questions during my appointment with Dr. W yesterday afternoon, which only confirmed my gut feeling.

He said my choice seemed a reasonable way to proceed. In fact, the answers to some of my questions prompted him to say, "that would go on your pro list" for choosing Gemcitibine. I'm 95 per cent happy I'm going this route, while five per cent of me wonders if I've made a mistake. But I have to go with my gut and my mind, get going on the treatment and move forward. None of us can always be 100 per cent sure our choices are the right ones, but we have to do our homework and trust our instincts.

So here are the pros and cons of proceeding with the Gemcitibine/Carboplatin combination:

PROS

Gentler side effects - less nausea, no neuropathy (tingling and loss of feeling in hands and feet), etc.
No need to take steroids to counteract the nausea - I'm still leery of steroids considering they could have caused the perforated bowel and resulting surgery. And if I don't take steroids, we can avoid the appearance of Bitchy Tina, which is always a good thing.
I've tried the Carboplatin/Paclitaxel combination before and I know it works. But perhaps this chemo combo will work better and give me longer between reoccurences.
Over time, cancer's response to Paclitaxel becomes less effective. By not using it this round of treatment, I wouldn't be diminishing its effectiveness to use in the future.
Clinical trials I've heard about often use Paclitaxel by itself or in combination with another chemotherapy and a clinical trial drug. If my cancer develops a resistence to it, these types of clinical trials won't be viable treatment options in the future.
Another way to treat ovarian cancer involves using Paclitaxel by itself via weekly infusions. It's been proven to be effective and less toxic. Again, if my cancer is resistent to this chemo, I wouldn't be able to pursue this option.
There's a better synergy with Gemcitibine and Carboplatin in its cancer fighting abilities. So they work together more effectively. I also read on the Internet, Gemcitibine can also enhance the effectiveness of drugs used previously to fight the cancer. So I guess if there are residual drugs still in my body, Gemcitibine can use them to help fight my cancer cells.
Carboplatin is infused over 1-1/2 hours, Gemcitibine over 30 minutes, which means I'd be able to receive my treatment in about two hours. In the past, the Carbo/Taxol combination had me in the cancer suite for five to six hours. This option significantly cuts down on my time in the cancer centre. (But see point 5 on the cons list.)
Gemcitibine is tolerable over a longer period of time than Paclitaxel. Usually by the end of six treatments, women must stop using Paclitaxel because the toxic side effects are too bad. While my treatment regime with Gemcitibine would be for the same six cycles, I could probably keep taking Gemcitibine for longer, if needed. (Of course, this is only if I tolerate the drug well. In approximately five per cent of patients, the side effects are intolerable.)
Over time, patients develop a resistence to Carboplatin, which eliminates some treatment options. Dr. W said some research indicates Taxol increases the risk of developing Carboplatin resistence sooner. I want to be able to use Carboplatin as one of the chemotherapy agents as long as possible.
I wouldn't lose my hair. Yup, vain Tina saves this pro for the end. While I've read reports of thinning hair and the side effect sheets talk about loss of hair, I've got a far better chance of keeping my silky strands with this treatment option.

CONS
(Of course, this is the flip side of the coin and the pros for using Paclitaxel.)

I've never used Gemcitibine before and I don't know if my cancer will respond to it.
I also don't know which side-effects I'll experience from this chemotherapy.
Side effects could include a reduction in red and white blood cells, increasing the risk of infection, anemia and bleeding. As a result, I may need a blood transfusion. Others side effects include: flu-like symptions (fever, chills, aches), fatigue, mild nausea, skin rash, vomitting and lack of appetite.
To reduce the toxicity of the Gemcitibine/Carboplatin combination, the Carbo dose must be reduced. Dr W said he doesn't think this reduces the effectiveness of this treatment option, but it does provide less of the cancer-killing Carboplatin. (Or perhaps less Carbo slows down the time before the body develops a resistence to this drug.)
The treatments are more often. I'd head to the cancer centre week one to receive the combination of Carbo and Gemcitibine, the following week, I'd go again for a 30-minute infusion of Gemcitibine, then I'd have a week to recover before starting all again. So I'd have to head to the cancer centre for treatment twice in a three-week period; albeit for shorter periods of time. (See 8 on the pros list.)
Carboplatin and Paclitaxel is the gold star standard treatment for ovarian cancer. They're considered the big guns. Am I making a mistake not pulling out the best known treatment for this reoccurence?
This chemo combo worked for me before, so why not set it lose on the cancer again?
I'm familiar with the side effects of Carboplatin and Paclitaxel, know when to expect them and generally know when I'll start to feel better again. I know how bad they are and how to get through them. Gemcitibine is an unknown, but all the literature says its side effects are gentler. (This is a wishy-washy con, I know, but I wanted to put it somewhere.)

Studies report the two treatment options are equally effective, so that's not necessarily a deciding factor. Dr. W said if I try one and we determine it's not working (via CA-125, ascities production and CT scans), we can switch to the other - or perhaps a new option available at that time.

I'm happy to have options and to be moving forward. The day I receive chemo next week will probably change. I'm trying to schedule my appointment so the really bad side effects hit me while my kids are at school. With the Paclitaxel/Carboplatin treatment, those occured on days three to six. Dr. W said the Gemcitibine/Carboplatin side effects tend to hit right away. So I've asked for a Wednesday appointment so I can be through the tough stuff before spending the weekends with my kids. For now, I'll leave most of next week open so when I get the phone call on Monday confirming my appointment, I'll be ready.

Oh, and just to answer Sandra's comment on yesterday's blog: I have a tube in my abdomen through which the ascities drains into a collection reservoir. I empty the reservoir regularly because it collects approximately 300+ mL of ascities a day. If I didn't drain this way, my abdomen would continutally fill up with the fluid produced by the tumours in my abdomen, which is extremely uncomfortable. When too much ascities has built up, paracentisis is required (sticking a long needle into the abdominal cavity and siphoning off the accumulated ascities). The proccesses of filling up and getting drained are both extremely uncomfortable, and considering the amount of ascities my cancer produces daily, I'd have to have paracentisis every week, which comes with its own risks. The drainage tube (with which I have a love/hate relationship) eliminates the need for paracentisis. Dr. W withdrew ascities directly from my reservoir to send to the lab - a painless procedure.

I know today's blog conveyed lots of semi-complicated information. Please feel free to contact me if you have questions or need clarification. I now know far more about ovarian cancer, its treatments, and the ups and downs of the journey with this disease than I ever dreamed.

But at least I'm still here to educate myself - and as a result - you too.

Tina

C day - next Thursday

2011-11-10T08:19:00.000-05:00

I got the phone call yesterday and my first chemo treatment is next Thursday. Woo hoo! (Although it seems kind of odd to be so excited about having toxic chemicals injected into my body.)

I asked for Monday or Friday, but because of the Remembrance Day holiday, appointments are backed up. So, my first treatment will be next Thursday, with subsequent ones on Fridays. Why the day-of-the-week request? Because I know from experience I generally feel okay for two days and then fall into a black hole for a few days, where I experience the pain, lethargy and disinterest. When taking steroids to combat nausea, "Bitchy Tina" makes an appearance on about day five post-treatment. If my chemo is on a Friday, those black days fall on weekdays, when I'm alone most of the time. I can moan as much as I want without worrying others and don't have to make an effort be civil. It takes enough energy just to deal with the side effects, let alone feel as though I have to step up and be social.

As for the chemotherapy drugs I'm going to receive, the decision is still up in the air. When I wrote my blog yesterday comparing the carboplatin/paclitaxel treatment versus the carboplatin/gemcitibine one, I noticed I was emphasizing the good things about Gemcitibine - less toxicity, less nausea = no need to take steroids, not losing my hair (yes, vain Tina is talking here) - and I wondered why I wasn't choosing that option if the effectiveness statistics tend to be about the same.

Then my sister, smartie pants that she is, asked a good question, "If I take the paclitaxel again and this is the last time it's effective, won't that exclude me from future clinical trials that involve this chemotherapy drug?" There's no guarantee it will stop being effective if I do receive it, nor is there a promise it will work this time. I was contemplating calling Dr.W yesterday afternoon when he called me. Fortuitous timing for me because getting through to the right person at the cancer centre can be a challenge. We talked through Angie's question and again contemplated the pros and cons of each drug. I'm also meeting with him this afternoon, where we'll determine which chemo I'm going to start next week.

I'm heading to the cancer clinic again today to provide some of my ascities for the Translation Ovarian Cancer Research Group to use for its research work. I'm more than happy to give them as much as the researchers want and hope using it in studies leads to interesting discoveries. What's vile to me is valuable to them. And I'll do whatever I can to facilitate research or raise awareness of this awful disease.

Speaking of awareness, the Run for Ovarian Cancer got some media coverage at the cheque presentation last week. As we work towards the $1 million goal for the 2012 run, awareness of the event and the disease is extremely important. As a survivor, I was interviewed and quoted in the article. Yup, it's part of my 15 minutes of fame. While I would have preferred to be in a situation where I'd talk about more pleasant subjects (perhaps me winning the lottery or becoming a famous author), I guess I'm destined to use these 15 minutes to talk about ovarian cancer. If it helps fund research or make more people aware of the devastating nature of this silent stalker, it's the least I can do.

Tina

Moving forward

2011-11-09T08:29:00.001-05:00

We finally have a plan!

It's not exactly the course of action I was seeking because that would have involved the added kick of a clinical trial drug, but I'm happy to be moving forward. Next week I start carboplatin and paxlitaxel chemotherapy. These are the same two drugs I've taken for my past two chemotherapy treatments, and they're considered the standard for treating ovarian cancer.

We're proceeding with these two drugs because they've worked in the past to kill the cancer, and the docs in both London and Hamilton believe it has a great chance of working again, especially since I have the BRCA gene mutation. Research shows ovarian cancer in those with this gene mutation tends to respond positively to chemotherapy treatment (positively for the patient, but not for the cancer cells because they die). My London oncologist did point out this responsiveness tends to slow down at some point, but he's optimistic the chemo will work again this time.

Yesterday, I had an appointment with Dr. W, my London oncologist who also coordinates clinical trials. He patiently discussed the pros and cons of the various treatment options available to me - the ones Dr. H suggested, as well as a few more of his own. While two clinical trial drugs sound promising - the P53 inhibitor and a different PARP inhibitor - both studies are in the approval phase with no clear sense of when they're going to start. It could be a couple of weeks or a couple of months.

I'd prefer to take one of these in conjunction with my chemo, but I can't wait. I feel like I've been stagnant long enough, allowing the cancer to grow inside me. I have to start sending my stealthy ninja warriors (aka the chemo) back in to hack, slice and defeat those cancer cells. Luckily, I found out yesterday that while I have "lots of cancer" inside me, the CT scan reveals it's still on the surface of organs and hasn't penetrated any of them. So I need to get some chemo in there, shrink those tumours and distract them from trying to invade new organs.

While Dr. W and I decided to go with the carboplatin and paxlitaxel combination, I also had the option of trying a different chemotherapy option with approximately the same success rate - carboplatin and gemcitibine. Paclitaxel is a more toxic chemotherapy, producing nausea, neuropathy (tingling and loss of feeling in hands and feet), joint and muscle pain, etc. Gentle Gem, has fewer of the nasty side effects, although its more common ones are fever, joint aches and rash. Approximately five per cent of patients find the Gem's side effects intolerable.

Part of me would like to go the Gemcitibine route because of these gentler side effects and because it won't necessarily make all my hair fall out. I know, it's a stupid reason and one I didn't really use to make a decision, but it'd be a bonus.

Another plus would be the ability to skip the pre-chemo steroids to prevent nausea. Dr. W said they may not be necessary with the Gemcitibine. Given the steroids may have caused the ulcer (if that's what I had), I'm a little leery of them now. Although when I talked to the pharmacist during my stint in the hospital, he said a couple of big doses, which is what I'd take with chemo, are more easily tolerated than a small dose over a longer period of time. But they still make me nervous.

Another option Dr. W discussed was coming in for a weekly dose of Paclitaxel chemotherapy. Research shows it tends to be better tolerated and works well to combat cancer. But I'd have to be on steroids and go into the cancer centre every week with this treatment regime. I turn into Bitchy Tina on steroids, so having this unpleasant side effect weekly would be hard to tolerate. I can't stand myself when this happens and I feel extremely sorry for my family.

The weekly Paclitaxel treatments are currently being studied in conjunction with a clinical trial drug, but I don't even qualify for this study because I've had surgery within the past six months. In fact, Dr. W said I may be excluded from some future clinical trials because of my bowel perforation. It disappoints me enormously that some potentially life-saving treatments may not be available to me now.

So I considered all these options and the recommendations of Dr. W and Dr. H, to determine my plan of attack. I'm going to go with the paciltaxel and carboplatin chemotherapy. I think it's the best choice from the options available to me today, despite its potential toxicity. I've also been through the chemo combination before and know what to expect. It's not pleasant, but I know I can get through it.

Now I'll anxiously wait by the phone for the call telling me which day I'll start treatment next week. Believe me, I tried to push for an appointment in the chemo suite for this week, but hospital staff are off because of Remembrance Day on Friday, so no such luck. Perhaps that's for the best because starting next week means I should feel okay for Christmas. (Yes, I've examined the calendar in detail.)

By going with this treatment option, we'll keep the gemcitibine combination and all the other potential treatment options in our back pockets to use if this treatment doesn't prove effective this time around or in the event of reoccurence. But hopefully, when that happens, the timing will be right for me to participate in another clinical trial that may prove effective against this aggressive and deadly disease.

Tina

Life and death

2011-11-08T08:21:00.000-05:00

When I read the newspaper, I always peruse the obituaries. I've been doing it for years now to see if I know anyone (or perhaps their parents). It must be my stage of life. Since my cancer diagnosis, I also look at the age of the people who died. If they're young(ish), I try to determine the cause, which is often discernable by the donation requests for a specific charity.

On the weekend, I was happy (and that's probably the wrong word) to note only one listing announced the death of a young man who died in a car accident. The rest were for individuals who died in their late 70s, 80s, 90s and beyond.

I know my perspective is tainted by cancer, but I'd be thrilled to make it to age 75 plus. That's 30 more years of living and experiencing all the world has to offer. It's watching my children grow up and perhaps witnessing the birth of some grandchildren. Retiring, senior-citizen curling, living in Port Franks, empty-nest syndrome with my honey and travel would fit nicely into those 30 years.

But this aggressively persistent cancer has me mulling over the wording for my own obituary. I've been planning to write it since my surgery and too-close-for-comfort brush with death, but I've been procrastinating. The words come to me easily, so I'm not sure why it's so difficult to open up a Word document and simply type them up. Maybe it's the concrete nature of having a formal obituary.

Ironically, I had an appointment with a friend who works at a funeral home scheduled for the day after my surgery. I'd planned to sit down, talk about funeral options, look at the caskets, talk about the services and make my final arrangements. Since I was recovering in the hospital, I obviously didn't make it. But it's one of those items, like the obituary, that's on my to-do list. My planner characteristics are coming through when I'm concerned about an event that will take place after I'm dead. In reality, I don't want to leave the responsibility to those who will be filled with grief when I die. A little silly, I know, but that's just me.

I'm not talking about this to be morbid or sad, but to let you know what fills my brain some days. I know it's weird to think about one's funeral, what it would be like and who would attend, but I think those who suffer serious health issues (or perhaps get to a certain age) entertain similar thoughts.

We're all marching towards death because it's an inevitable part of living. Just remember, this is one journey where it's not about reaching the finish line. Instead it's about the activities that fill those days, hours and minutes that make up a life. It's filling the time with wonderful people and activities, creating memories that will live long after we leave this earth.

Go out there and live!

Tina

Recovering but. . .

2011-11-07T07:59:00.003-05:00

I'm slowly recovering from my surgery that unceremoniously took place 5-1/2 weeks ago. My incision and drainage tube sites have healed up nicely and my stamina is slowly returning. I actually have small periods of time when my stomach doesn't hurt and there are days when I don't reach for the bottle of Tylenol (I rely on a dose or two most days to take the edge off).

But I think the cancer is wreaking havoc on some of my internal systems. In fact, it may be contributing to my stomach discomfort and causing rib pain. While my capacity to eat has improved, I think the cancer is pressing on my stomach, causing pain when I eat too much. I've also started throwing up at night when I feel too full. I've vomited three times in the past four days. It's very unpleasant, but I feel so much better afterwards. While this may be an effective weight-loss method, I certainly don't want this to become a way of life for me. I'd rather be a fat foodie with no vomiting issues, thank you very much.

While I'm grumbling, I'd better throw in a few complaints about the long drainage tube and collection reservoir I drag around with me everywhere. The tubing is as tall as I am (a statueque five feet), which is impossible to hide within my clothing, so I carry around a pretty red bag with a ladybug on it to hide this medical paraphenalia. I shower, sleep, cook, shop, go to appointments and walk with the whole kit and caboodle.

It's easy to get the tubing caught, which pulls on the insertion site in my abdomen. The aggravating tube gets clogged and comes undone (last night it did that in bed, creating a soggy little mess). I worry about keeping it sterile to prevent infection. It's also pulling on my skin at the insertion site to create a bigger hole through which ascities can seep when the tube gets clogged. I'll be very happy when the treatment stops the cancer from creating ascities and I can get rid of this contraption. I'm sure it will be very freeing.

And I may as well throw in another minor little complaint while I'm whining: the area under the bandage around my PICC line gets extremely itchy - and I can't scratch it properly. Ugh!

Behind all this complaining, I'm really worried. I'm scared that even when I start chemotherapy, and the ascities dries up and cancer shrinks, my body won't go back to "normal." By that I mean being able to eat a decent meal, drink water, coffee and maybe even alcohol without discomfort, and enjoy a pain-free day. It also means not having tubes snaking from my body.

I know I'll have the chemo-related side effects and the resulting bad weeks, but I hope to also be able to once again experience the good weeks where I feel as though I'm playing hooky from work because I feel so well. I know I've said this before, but I'm really afraid this is as good as it gets from this point forward, and that makes me angry.

I'm furious this stupid disease is stealing time. It's sucking up happiness from me and my family. It's robbing me of strength and peace. Regularly, when someone mentions an event in the future, I wonder if I'll be around for it. I watch older people on the street and lament I'll probably never know what that feels like. I hear about the burdens of old age and give a sad, little cheer I won't have to worry about them.

I fret about the future of my wonderful husband and family. I want to celebrate all the milestones of my children and grow old with Michael, but statistics scream I probably won't be. I want to have hope, strength and determination, but some days (obviously) I don't. The burden of this disease is a heavy weight and sometimes it's hard to be positive and believe.

I'm sorry I'm starting this week out with a semi-depressing blog. It is a beautiful day and I'm sure my mood will improve, but this morning, I'm tired of all the crap and needed to vent a bit. Thanks for listening.

Tina

All for research

2011-11-04T08:24:00.000-04:00

It was, literally, a big cheque and the number on it - $120,600 - was a significant amount. Thanks to the hard work of all those involved in the Run for Ovarian Cancer, that money will support ovarian cancer research in London. Woo hoo!

I attended the cheque presentation/celebratory event last night at the London Regional Cancer Centre. The event left me exhilerated, and a little exhausted. Yet I couldn't fall asleep last night because my mind kept replaying snippets of the evening.

Several run team captains and family members of women with or who succumbed to ovarian cancer attended the event, along with the hardworking members of the organizing committee, the generous sponsors, the brilliant doctors and researchers and gracious representatives from the London Health Sciences Foundation.

I gave a little speech to the group about my experience with ovarian cancer and the clinical trials with which I've been involved. I also shared my story with two reporters covering the event. Apparently, many women don't want to talk about their journey with this cancer, but I welcome any opportunity to share if it means better awareness or more research. Unlike some other cancers that have lots of publicity and a famous spokesperson, ovarian cancer remains in the shadows of the spotlight and therefore doesn't get the same degree of funding or attention. If my incessant little voice can increase the cause's awareness, I'll talk until I'm hoarse. I may not be famous - and I'm a little shy and introverted - but I'll do what I can.

Last night, the attendees had the opportunity to tour the research labs and learn about the exciting work of the scientists. Their focus is treating ovarain cancer, especially in its later stages, which is the state of the disease when many women are diagnosed. I love hearing about the avenues they're exploring and the collaboration with other cancer research. It gives me hope a better solution is around the corner. As a doctor emphasized last night, it's about giving those with ovarian cancer more time to enjoy life. That means success.

Several people told me last night they read my blog and follow my story. I was buoyed by all the support and well wishes. Many also expressed gratitude for sharing my experiences, both via my blog and my little speech.

A researcher shared he gains insight from my blog into what a patient experiences every day when dealing with ovarian cancer and the issues important to her. He gave me an example: If someone could figure out a way to stop ascities production, it would improve quality of life. My reaction was an emphatic, "Yes!" But unfortunately, he isn't aware of any research going on in that area. Yet insights like this can be extremely valuable to those working at the laboratory workbenches.

Last night's celebration made me excited about the 2012 run, it's 10th anniversary. The event's goal is to raise $160,000, to bring the overall total to $1 million for ovarian cancer research. Wow! While this fundraising target is aggressive, it's achievable with hard work and dedication; something those involved and participate in this event have in abundance. Lace up your running shoes and get fundraising early; we've got an exciting goal to reach.

Tina

14

2011-11-03T08:24:00.000-04:00

In some ways, it feels like only a few short years since Michael and I welcomed our adorable little son into our lives. Yet today, he turns 14 years old.

He was a cute baby, with dark hair and bright, inquisitive eyes. He was also a good baby, sitting in his car seat, watching me bake, shop or fold laundry and listening to me babble - until he'd fall asleep. While he was full of energy and needed regular stimulation, he was a good baby. He was quick with the milestones too: rolling over at 3-1/2 months, walking at eight and talking in short sentences at a year old.

Today, he's a typical teenager with his own language (powned, epic fail - what?!), a wacky sense of humour, a need for a lot of sleep and a unique, "why don't you take a shower" aroma. As with most teenagers, his priorities are different than ours (the need to keep his room neat or do chores on time) and his friends are important. He can also be thoughtful, sensitive and helpful. He's smart as a whip, quick with a pun and an awesome drummer.

In grade 9, he's discovering new talents and skills, which are expanding his horizons. I hope I have the opportunity to see what career piques his interest and which girls capture his heart. I get excited envisioning the best for my little boy (for he'll always be that), who made his appearance 14 years ago today.

Tina

P.S. I have an appointment with Dr. W on Tuesday to talk treatment. I was hoping for this week, but no such luck.

London Life rocks

2011-11-01T07:50:00.001-04:00

Almost nine years ago, I started working for an amazing company, with unbelievably generous people. In early December 2002, I joined London Life's communications department on a one-year contract and I haven't looked back since.

I've always said, it's the people who make or break an organization. Well, those at London Life are the cream of the crop. I've never felt more supported or loved than by my colleagues (aka friends) at this company. When I went into the hospital a month ago, my wonderful friends started asking how they could help me and my family. I was visited by several of them while in the hopsital and food started arriving at my doorstep from the time I arrived home.

These same friends also started Team Tina to participate in the Run for Ovarian Cancer when I was diagnosed in 2009. Many of them participate and raise funds for ovarian cancer research every year, and for that I'm very thankful. This event raises money for ovarian cancer research in London; work that may lead to a discovery to help me in my fight.

London Life, the organization has also been wonderfully supportive during my journey as well. It matches the funds raised by Team Tina, up to $6,000, each year, which gives the diligent researchers even more funds to support their work. In addition, the organization supports me financially through disability benefits while I take time off to fight this stupid disease. I'm lucky to belong to the London Life family.

I went into work yesterday to clean out my cube. I won't be using it for the next six months or so, and space is in high demand. While I was there, many stopped to say hi, give me a hug, ask me if I needed help and wish me well with my treatment. I loved seeing all the friendly, supportive faces. (And apparently, I look much better than I did before I went off. Apparently, I wasn't looking so good.)

Throughout my journey with cancer, my work friends have showered me with food, gifts, love, friendship, hugs and support. At times it's overwhelming how generous people are because I know I can never say thank you enough or repay the generosity. I marvel once again at how lucky I am to have such wonderful people in my life. I'm truly blessed.

Tina

Be careful with your wishes

2011-10-31T07:12:00.000-04:00

Since I've always stuggled with my weight, I've wished I didn't love food so much. I envied the self control I saw in some to take small portions, enjoy them and be completely satisfied when done. I've wished for the ability to escew high-fat treats like donuts, baked goods, chocolate bars, etc.

But what I wouldn't give to be able to eat a full meal right now, complete with dessert, and not be uncomfortable afterwards. I went to my in-laws last night for dinner. I was famished and kept encouraging my kids to quickly finish the pumpkins they were carving so we could eat.

I thoroughly enjoyed the slice of garlic roast pork, mashed potatoes and gravy, along with the small spoons of beans and corn, but when I was done happily shoveling the smallish-sized plate of food in my mouth, I was in pain. I had to decline the warm apple pie topped by a scoop of vanilla ice cream my mother-in-law served for dessert and instead laid on the couch to encourage the pain-inducing gas to escape my body.

I have to lie on my left side to experience relief. It dawned on me last night, I have a tumour in my upper left quadrant (right below my ribs) that's probably causing all the ruckus. I'm sure when I fill my belly with nourishing food, it pushes against the tumour and I experience pain. That's also probably why I can only release the gas when I lie on my left side and gravity pulls the tumour away from my stomach.

I also desperately wished for this PICC line when I was in the hospital to spare me from constantly being used as a pin cushion to find a new IV site or draw blood, and as a conduit for liquid nutrition. Now it's a pain in the butt (or literally, the arm). Whenever the weekly dressing is changed, the line coming out of my arm shifts slightly so it rubs against my arm, causing it to bleed. So for a few days after the bandages are changed, I experience pain. The skin that's constantly under the bandage is also very itchy. I also have to cover the entire area with a plastic sock-like contraption every time I shower because wetness can lead to infection. I know I'll probably be grateful for the PICC line's existence when I start to get chemo, but right now I'm not thrilled with another contraption sticking out of my body and causing discomfort.

In the past, I've also wished for more time at home to read, relax and spend with my family; hours away from the rat race of work and extracurricular activities. But I certainly didn't want the time if it meant it had to be spent fighting an awful disease like cancer. Quite honestly, I'd rather be working and living a more normal life than having this time at home (and the hospital). Now, a few extra weeks of vacation would always be welcome, but to have time off like this is no fun. I'm stuck in limbo now, and later I'll be getting treatment and recovering from it.

While all three of my wishes came true, my sadistic fairy godmother put a cruel spin on each of them. I think it's time I trade her in on a new (and kinder) model. I think I'm due for some good magic.

So, be careful with your wishes. Or better yet, simply enjoy the abilities and blessings you have in your life today. Don't wish the time nor the good experiences away. They're all precious and you never know when life could change, flipping those wishes upside down.

It's Monday, and while you may be groaning, be thankful for a fresh week, a crisp fall day, a job, the little trick or treaters who'll be ringing your doorbell tonight and perhaps a special excursion or activity planned for this week. It's all good.

Tina

Tiny steps forward

2011-10-28T07:44:00.000-04:00

I'm regaining my fighting spirit. My social worker commented on this transformation during our session earlier this week. Moving forward with a plan to tackle my cancer awakened my sense of action and purpose.

A warrior spirit is good because it pulls me up from the depressing, soul-sucking apathy of waiting and doing nothing. Oh, I know I'm healing, which is important, but my mind whispers warnings the delay allows the crafty cancer to gain a stronger toehold in me.

I was tackling the disease with the Regorafinib. My CT scans showed noticable shrinkage and my CA-125 level dropped significantly. But, despite its efficacy, it's not safe for me to take the drug again. So I must consider the other options.

My clinical trial nurse from Hamilton called yesterday to say Dr. H recommends I go back on chemotherapy - carboplatin plus either paclitaxol (the "gold standard" of ovarian cancer chemotherapy care) or gemcitibine, another proven chemo treatment. It's called "gentle gem" because of its milder side effects. But I'm not necessarily looking for mild, I want effective, potent and lethal to cancer cells.

Apparently, the P53 study is held up at the provincial level due to some wording in a consent form. While that sounds easy to resolve, I suspect the wheels of medical research administration move slowly. Then after the study is approved at the provincial level, each cancer centre must then seek the okay. Dr. H seemed to think this would only take a couple of weeks, but medical red tape and hospital bureaucracy will probably hold its start up longer than I'd like. While I'd prefer to also take this drug in conjunction with the chemotherapy, I don't think I can wait.

My next steps involve trying to get an appointment with Dr. W, the oncologist in London, who co-ordinates clinical trials. I suspect I'll hear back from the triage nurse today with an appointment for (hopefully) next week. London is also working to secure the P53 study, so during our meeting, I'll quiz him about timing and ask his opinion about my best treatment option.

But I suspect it'll be back to straight chemotherapy in London. I'll head back down the rabbit hole of darkness and experience the wide range of debilitating side effects. But I'll be beating the cancer back and reclaiming my body.

Maybe this is my path; how I'm supposed to treat my cancer this time. Perhaps it will create a window or an opportunity for a different experimental treatment - one that works - in the future. I have to trust in God and that everything happens for a reason.

I'm disappointed I'll be doing chemotherapy alone, since combining it with a new drug could prolong the cancer-free periods. But I will be working to beat this beast so I can enjoy time, and that's the most important thing.

My resolve is strong, but I'll need the support of my "village" to drag me up during the dark days. I know I can count on you.

Tina

Many options

2011-10-26T07:21:00.001-04:00

I went to my doctor's appointment in Hamilton yesterday, anticipating information about and a recommendation between two cancer treatment choices. I expected to have (or be close to) a plan when I walked out of the Juravinski Cancer Centre, ready to move forward. Instead, Dr. H presented seven or eight different options for treatment. As a result, I left my doctor's appointment a little confused and with no definite path to follow - yet.

Since it was working, the first option would involve going back on the Regorafinib. However, I may have been off the drug for too long to continue on the clinical trial. In addition, Dr. H needs to talk to the drug company sponsor to determine if it's safe for me to continue taking this drug. It may have caused my duodenum perforation, and if that's the case, there's no way I could or would want to be on this drug anymore. But I saw the CT scans from the hospital compared to the ones taken just before I started the Regorafinib and I saw visible shrinkage in the size of the tumours after one three-week cycle, which is encouraging.

Dr. H will talk to the Bayer representatives to determine if I still qualify for the Regorafinib clinical trial and I should know by the end of the week. But I got the feeling this probably won't be an viable option because of the risk.

Okay, it's back to paclitaxel and carboplatin chemotherapy, I thought. But Dr. H presented several different options to consider - different combinations of chemotherapy, chemotherapy in conjunction with other drugs, etc. He went through them fairly quickly, so I have to admit I'm a little confused. But if the Regorafinib isn't an option, we'll discuss the other treatments - and which he recommends - in more detail.

From our discussion, I think my best choice may be to take the standard chemotherapy treatment of paclitaxel and carboplatin chemotherapy in conjunction with the clinical trial drug P53, which regulates the cell cycle and acts as a tumour suppressor, preventing cancer cells from repairing themselves. My tumour samples from my original surgery would need to be tested to ensure I have TP53 gene necessary for this drug to work. Approximately 60 per cent of people tested have the TP53 gene.

This clinical trial should be opening up within the next week or so in Hamilton (and may even be available in London), which is ideal because I don't want to wait around again to start treatment. I feel any delay is giving the cancer a chance to take over my body; my worst nightmare.

Some might question my willingness to be part of another clinical trial so soon after the last one may have caused serious medical complications, but I believe in the necessity of research to determine better treatment, diagnosis and a possibly a cure for ovarian cancer. That's also why I strongly support the Translational Ovarian Cancer Research Group at London Health Sciences Centre, which is the recipient of the funds raised by the Run for Ovarian Cancer.

Besides, it's been proven the remission time between every round of traditional chemotherapy becomes shorter and shorter before reoccurence. By taking another form of treatment, I could be increasing my window of time, giving me longer to live.

Dr. H also presented other options, including different chemotherapy combinations. Some involve IV drugs, while another is available in pill format. I've got information sheets on some of the different drugs, with their uses, precautions and side effects, but I'll need even more information before I can make a decision. I also need to hear what Dr. H thinks would provide my best chances to keep the disease at bay for as long as possible.

I also found it interesting to hear his hypotheses for my perforated duodeum: the Regorafinib, the Dexamethasone steroids, the pigtail poking a hole in the organ or possibly the shrinkage of the tumour surrounding the area, pulling a hole in the duodenum. Given that I didn't have a laparoscopy in the hospital to confirm the presence of a tumour in my stomach, we'll never know the exact cause. In a way, that's scary because I don't know how to prevent it from happening again (if I could).

So long story short, Dr. H needs to do talk to Bayer about the Regorafinib. He also has to determine if I meet the criteria for the other clinical trail presented. Then we'll talk. So no specific plan yet, but lots of information to mull over. Hopefully, in the next couple of weeks, I'll start treatment and begin battling this cancer yet again.

Tina

Same old, same old

2011-10-24T12:02:00.000-04:00

I haven't blogged in a few days because I've nothing new or interesting to say.

I'm still in pain/discomfort every day from incisions, eating, gas or the cancer in my abdomen. Although I have cut way back on the painkillers, which is a giant step forward.

I'm still frustrated and impatient with my slow recovery. I want to feel "normal" now, even though I'm not even sure that's a state I can even hope to obtain. I may have to get used to my new normal.

I'm scared. I heard from at least two surgeons I was "full of cancer" so waiting around to heal before starting to target it makes me afraid it's invading and attacking other organs in my body. I'm afraid of dying in the near future and leaving all that is precious to me.

I'm lethargic and tired all the time, which frustrates me too. I'm trying to be good to myself, resting and napping, but it doesn't mean I like it.

I'm tired of not being able to eat properly. I love food, always have, and it annoys me when I can't partake in its cheesy, saucy, crunchy, savory, sweet or chocolatey goodness. Even my beloved coffee went by the wayside this morning because my tummy protested.

Wah, wah, wah.

Okay, for some good news, my mom and dad are both healing well from their surgery.

Noah is doing really well in high school. His marks are great and his spirits high.

Michael is doing better than he was, and coped quite well with the stress of me being in the hospital and my recovery.

It's been four and a half weeks since my impromptu surgery (can you believe it?!) so I can start cancer treatment soon. I meet with Dr. H in Hamilton tomorrow to discuss my options and hope to have a plan within the next couple days for eradicating the cancer in my body. Then I can move forward instead of feeling stuck in stasis.

Again, I need to remind myself to be patient and take one day at a time. To focus on the good things, even when it's difficult. Those are the things that make life worth living.

Tina

Frustrated rant

2011-10-21T07:42:00.002-04:00

I haven't felt completely well since mid-June and it's starting to wear on me. I'm sick and tired of being sick and tired.

Dragging a drainage tube around with me everywhere I go is a drag. I'm starting to hate that Michael needs to change the dressings around the tube and wounds after I shower every day. The tape pulls at my skin and irritates the areas it covers, leaving them red and sore.

Since this is my fourth major abdominal surgery (two C sections and two vertical incisions), it's going to take longer for me to heal, but I'm unrealistically impatient. I despise the tiredness and the lack of stamina. I hate when I get sore and I can't even put the footrest down on my recliner chair due to my sliced up abdominal muscles. I loathe the pain that leaves me rooted to the recliner, unable to help around the house. Sometimes I feel useless, unable to perform the simple jobs I used to do.

But I don't see my situation changing any time soon. I still have to heal. And when I start treatment - whether it's the Regorafinib or chemotherapy - it's going to take a while for the drug(s) to work to dry up the ascities so I can get rid of the drainage tube. Both treatments also have their own set of side effects with which I'll have to deal.

I even dislike the PICC line - the very one I was so excited to have inserted in the hospital. I can't get it wet. It itches like crazy under the bandages and tape. It sometimes still hurts. And I have to be careful not to catch it on anything. I know it has and will continue to make my life easier for blood draws and inserting drugs, but I've had enough of having extra devices in my body.

I know I'm grumpy today. I've been feeling discombobulated for a couple of days. I just want to feel well, and I have no idea if or when that will happen to me again. I'm frustrated and on a little rant.

Thanks for letting me vent.

Tina

A long day

2011-10-19T07:25:00.001-04:00

We left the house around 9 a.m. yesterday morning and didn't return until almost 12 hours later. It was a long day and I need to recover from it today with rest, relaxation and perhaps a nap.

First I had my appointment with my London oncologist yesterday morning. When I told him about the shrinkage seen on my CT scan after one round of Regorafinib, he seemed pleasantly surprised. I anticipated he'd recommend chemotherapy because that's the treatment with which he's familiar, but he encouraged me to go see Dr. H in Hamilton to discuss whether I could still be on the clinical trial and if my surgery and its subsequent delay in treatment excluded me in any way.

So, I made an appointment with Dr. H for next Tuesday to get more information and scope out my options. If the Regorafinib is effectively working and it didn't cause the peptic ulcer (Dr. P doesn't think it did), it may still be the best treatment option at this point.

After the trip to the cancer clinic, we had time to kill before my mom had to report to the hospital for her prophylactic double mastectomy, so we strolled around White Oaks Mall and had lunch. Of course, mom was required to fast, so she tortured herself by watching us eat lunch. I know exactly what that feels like given I spent many days in the hospital while others around me ate.

It's amazing how much my stamina has decreased over a short period of time. That combined with the abdominal pain from my surgery curtailed the amount and speed of my walking. Once I'm healed, it's going to be a long, painful road back to fitness.

By 1 p.m., we checked into St. Joseph's Health Care and the nurses whisked my mom back to prepare her for the three-hour surgery - which was a success. Even though she was wheeled into the operating room an hour early, she had some post-operative nausea delaying her release from recovery. Michael and I waited around to see her after the operation, so we didn't even leave the hospital until 8 p.m. My mom and sister started their 1-1/2 hour trek home about an hour later. I think everyone is going to be exhausted today. I suspect my mom will also be very sore.

When the plastic surgeon visited us in the waiting room to tell us the surgery was successful and to give post-operative instructions, she hugged me and said, "This was supposed to be your day too." Yup, it was, but the stupid cancer (and the unexpected perforated duodenum) derailed those plans.

But I'm happy for my mom. Her chances of developing breast cancer are now almost non-existent. Maybe one day, I too will be able to have this risk-reducing surgery.

Three successful surgeries in October. Now it's time for us all to heal and move forward.

Tina

October = surgery

2011-10-18T07:07:00.000-04:00

October's been a crazy month for the Thomas family. Besides the usual hubbub of normal life, we've had a little extra excitement.

First, I had my little incident (said with more than a touch of sarcasm) with the emergency surgery and subsequent days in the hospital. Of course, that threw everyone's schedule into disarray and meant my family made many unplanned trips to visit me.

Then my dad had surgery last Thursday to repair a hernia. The surgery went well, he was up walking that afternoon and I think he started pestering the doctors to let him go home the next day. Since he was eating, walking and didn't need pain medication, they sprung him on Saturday. Now he's home going stir crazy, ooops, I mean recovering.

Today my mom is undergoing her prophylactic double mastectomy. This is the same surgery I had planned for this fall, but unfortunately, my cancer reoccurence and now my abdominal surgery postponed this procedure. As carriers of the BRCA-1 gene mutation, my mom and I have a high risk of getting breast cancer. We both decided we'd rather undergo and heal from the mastectomy and reconstruction, rather than fight breast cancer and need the surgery.

It's a one-day procedure; she'll be sent home tonight. That seems really quick to me, but apparently that's the way the doctors do it. Of course, with her operation scheduled for 3 p.m. this afternoon, it's going to be late when she can start the trek home with my sister.

Mom and Angie are coming to my appointment with Dr. P this morning and then this afternoon, I'll head to the hospital with them for mom's surgery. I'm going to wait with Angie as long as I can (translation: as long as I'm comfortable and not exhausted).

October's been a stupidly insane month. Let's just hope November is calm and peaceful. I think we could all use it.

Tina

Time and realizations

2011-10-17T07:55:00.001-04:00

When something crazy happens in your body without you realizing it, you then question every odd (different, slightly strange, major, minor, etc.) feeling you have afterwards. While I knew my stomach hurt and I didn't feel well, I never suspected my abdomen was full of infected ascities and air. I never dreamed an ulcer careened into my stomach creating a hole. I didn't suspect I was on a deadly path and if I didn't veer off it, I'd meet my maker far sooner than I planned.

So after spending all that time in the hospital - with no desire to return - I'm home recovering. I know abdominal pain is to be expected because the doctors cut a long incision in my belly, washed my abdominal cavity out and inserted two ports. I suspect the ulcer could also have caused some painful damage. Then with my vastly shrunken stomach, I'm still having great difficulty eating and drinking much. When I do, I overestimate its capacity and end up hurting. I also think I need the nutrients and hydration to heal so I try to eat regularly.

But I don't know what is normal, healing pain and what could be an indicator of a problem. That worries me because I don't want to end up in a similar situation. I wonder if the hole has really healed or is everything I'm eating ending up in my abdomen to ferment, rot and cause infection? Is this stomach discomfort normal after not eating for 10 days and it'll only take time for it to stretch back to a normal size. Is my cramping abdomen and aching back pain expected after my type of surgery? Is the bloating normal? Is heartburn typical? Argh.

To say my experience scared me would be a bit of an understatement. Now that I'm home, with time to process the entire hospital adventure, I'm even more frightened. I figured with my cancer, I'd know when I was declining, with time to say goodbye and put my affairs in order. But now I'm realizing, I could develop a complication that could pluck me from my life with little notice or warning. That reality fills my heart with terror. I'm not ready to go.

Perhaps my doctor's appointment tomorrow will answer some of these questions. Maybe time will heal and reassure me. But one thing is certain, I have to process my realization and new reality. And that may take some time. Let's just hope I have lots of time to do just that, and more.

Tina

Hibernating

2011-10-16T07:22:00.002-04:00

I've been incommunicado over the past few days because I've been relaxing and reconnecting with my family. For the most part, my new home reality involves a lot of relaxing, some naps and only a few activities because I've still got a lot of healing to do. I think Michael and I also needed time to cocoon and be together over the past few days, assuring ourselves I'm still here and we can tenatively move forward.

The time since I've come home has been a little surreal, as if I'm a little cut off from reality. In fact, the entire month of October has been weird. I've either been in the hospital or squirreled away in my home, the hands-down preferrable location. But my situation changes next week, as I start going to appointments and getting out, so I'm sure my life will start to feel a bit more normal then. I see Dr. P, my London oncologist, on Tuesday to discuss next steps for cancer treatment.

I spoke with my clinical nurse from Hamilton on Friday and during the conversation I learned an interesting fact: the Regorafinib had started to shrink my tumours. When Dr. H reviewed my CT scans from when I was in Emergency and compared them to the ones taken before I started the clinical trial, the cancer was smaller. After only three weeks on the drug, there was visible difference. Hunh.

I'd had my mind made up I was going to do chemotherapy. It had worked in the past to kill the cancer, albeit for short periods of time, so I was determined to go with the proven treatment. But now that I've learned the effectiveness of the Regorafinib, I have two options.

Part of me is scared the clinical trial drug caused the ulcer perforation. My nurse said that while she cannot be 100 per cent sure it didn't (because it is an experimental drug), there are no indications the Regorafinib causes these types of side effects.

So I've got a tough decision ahead of me in the coming weeks. I'll gather the data, assess my situation, pray and figure it out. I think a trip to Hamilton may also be necessary to get the information I need.

While my body is still in my little isolated world, my mind is already making the foray into the bustling world of reality. I've got letters to write, budgets to balance, benefits to submit and other computer work to do. Physically, I may take one more day to hibernate and heal in my home before popping some pain killers and moving out into the world to (more slowly) get things done. Wish me luck.

Tina

My own bed

2011-10-13T07:13:00.000-04:00

Last night, I sat on my own couch, holding my husband's hand, and watched a movie with my family.

I slept in my own comfortable bed, and my back and shoulders are thanking me for it this morning. No one came in my room throughout the night to change an IV bag or check my blood sugar.

I wasn't awakened at 5 a.m. by a nurse who needed to empty my drains and check my blood pressure, pulse and oxygen levels. Nor did the doctors congregate around my bed this morning to discuss my case in five minutes flat.

I'm able to sit in my own office and write my blog this morning, instead of from a not-so-comfortable hospital bed.

I get to see my kids and help them get ready for school.

It's good to be home.

Tina

Home!

2011-10-12T16:31:00.000-04:00

By 12:30 this afternoon, I was in my own home. It looked so big and felt a little strange. It reminded me of times when I've returned from a vacation where I'd made a hotel room or mobile home base for a week or two. I always appreciate my humble abode so much more. That's especially true this time, when I lived in a hospital room for almost two weeks.

The first thing I did was hop in my bed for a 1-1/2 hour nap. I slept soundly and didn't move for the entire nap time. Sleep is very rejeuvenating and absolutely necessary for the healing process so naps will probably be part of my routine for the next while.

It was awesome to greet my children when they got home from school. I got big hugs and smiles. Tonight, the Bratschers will spend some time together as a family, doing something normal. We'll nosh on pizza, watch a little TV and probably head to bed early.

Remember, just because I'm not in the hospital any more, doesn't mean visitors aren't welcome at my house.

It's good to be home.

Tina

Homeward bound

2011-10-12T07:13:00.000-04:00

Thirteen days.

I've spent almost half a month in the hospital.

It was still September when I shuffled into Emergency, all hunched over and in pain. Little did I know my life was about to change, probably forever. This whole experience is a complication from my cancer, the first one.

Up until now I've only treated the disease by undergoing chemotherapy or taking clinical trial drugs and suffering the side effects of these treatments. But this is the first time another organ or system was seriously affected and needed attention. It wasn't a simple, benign complication, but a life-threatening one. The transition from only needing to treat the disease to experiencing other medical problems because of the disease frightens me.

But as my doctor said yesterday, we'll take each one and deal with it as it comes. That's good advice because I could get overwhelmed and panic if I think about it too much.

So today, I celebrate going home - to my family, my home, my bed. I'm sure I'll progress a lot quicker down the road to recovery in my comfortable home environment.

Thank you to everyone who visited me in the hospital. Your cheery smiles and distracting conversation made it easier to tolerate this place. I also want to say thanks for the flowers, cards, photos, gifts and phone calls. It's nice to feel loved.

I'm a lucky woman, who gets to go home today.

Tina

One more day

2011-10-11T07:41:00.001-04:00

If all goes well today, I go home tomorrow!

The doc I saw yesterday, when he progressed me from liquids to solids, talked about me going home today. When he said that, my heart leaped into my throat. It felt too quick after reintroducing food. I felt as if he were tossing me out without really knowing if all was functioning properly.

But I got a new doctor this week (I think when you come in via Emergency into general surgery, the lead doctor rotates every week). The new doctor actually talked and listened to me this morning. I said I felt very full, uncomfortably so, from eating, which concerned me. She said that's normal because my stomach shrunk, as long as I was passing gas.

She's going to get rid of the TPN today, which is also suppressing my hunger. So hopefully that will reduce the feelings of fullness and encourage my hunger to return. When I lose that line, I think I'll be free of all my IVs. And if they remove one of the drains today, I'll be down to only one drain to cart around. I'll go home with that one drain, which will probably stay in until the ascities production stops with cancer treatment. The rest of my staples also come out today.

While it would be great to go home and sleep in my own bed tonight, I feel more comfortable with the plan to keep me one more day. That way we can be sure all is working properly.

Tina

Happy turkey day

2011-10-10T17:45:00.000-04:00

I was eagerly anticipating real food for breakfast this morning, so you can imagine my disappointment when I got orange jello, orange juice, coffee (which I drink with milk and could only have black - blech). I didn't realize the doctor had to change the orders today before I got real food.

He stopped in around 10:30 a.m. and I guess since I didn't vomit up the clear liquids, he said I could have real food. In other words, he didn't ask how I felt or how I thought it was going, but looked at my chart and made a decision.

As a result, I was really looking forward to lunch. When the tray arrived, it once again held only clear liquids. I reiterated the doctor's diet change but was told the order probably didn't get put through in time so I was still on clear liquids. So I sipped up the veggie broth, but I couldn't eat another jello nor did I want the grape nectar. When another porter came to get my tray, I mentioned my sad situation and she took action. She scrounged some food for me so I could eat.

I noshed on a turkey sandwich, half a piece of nut bread and some cranberry juice. I was brought so much food, I have leftovers: vanilla pudding, apple sauce, social tea cookies. I'll never eat it all, so I'll send some home. I go from fast to feast.

Turkey is the theme of this Thanksgiving day because I got two slices of it for dinner with mashed potatoes, gravy and mixed veggies. I was able to consume about half the meal with some apple juice before my tummy said, "Enough. I'm full." It doesn't take much to fill me up now. But I've got a lovely piece of carrot cake and some Carnation Instant Breakfast if I want something later. (I suspect the carrot cake will be the first priority.)

I've got some cramping and gas, which my nurse says is normal when reintroducing food. It also feels weird to feel full. The important thing is I don't have any nausea or vomiting. So far, so good.

I got half my staples out today. If the incision stays together and continues to look good, the other half will come out tomorrow. Wow, another step forward. The docs were also talking about taking out one of my drain tubes. The one that drains the most gets blocked by blood clots, so I'm not sure which they'll take out before sending me home. I suspect the removal will hurt, but it will be good to be down to one drain.

One day at a time. Every hurdle I jump is one step closer to going home.

Happy Thanksgiving to all my Canadian friends.

Tina

So flavourful

2011-10-09T19:13:00.000-04:00

It was the most flavourful chicken broth I've ever tasted. An explosion of tasteful bubbles filled my mouth from a ginger ale. I sipped super orangy orange juice. I can't believe how flavourful foods are when you've only tasted ice chips for 10 days.

My doc came in mid-morning and said I could drink today. I was so excited, yet nervous. The nurse quickly brought me a diet ginger ale and I took some tentative sips of the very tasty liquid. At lunch, the nurses and my sister diligently watched the tray delivery to ensure I got one with clear liquids. Then I feasted (and that's what it felt like) on chicken broth, a few scoops of cherry jello and some orange juice.

After that exciting, but small meal, I was full. I'm sure my stomach has shrunk considerably over the past week and a half. And I'm cautiously taking it slow. It's better to consume small amounts and let my body get used to it than to watch them come back up. In addition, it feels weird to actually have food in my belly again.

Of course, I'm monitoring how I feel. I notice every little growl, burp and twinge because it could be a sign I'm not tolerating the liquids well. But my stomach felt okay this afternoon; different, but not necessarily in a bad way.

I even had another cup of chicken broth and the full jello for dinner. I'm also sipping a punch of orange juice and ginger ale. Of course, I have to keep putting ice in it because it warms up over time. I'm not quite up to guzzling anything yet. Small swallows are all I can do, and one can of pop is lasting me all day.

I'll see what the breakfast tray brings in the morning. Perhaps I'll move on to soft foods tomorrow. Despite this giant step forward, I'm not anticipating when I'll go home. I am taking it one day - or maybe that should now be one meal - at a time.

Tina

Courage

2011-10-08T18:14:00.002-04:00

Healing takes courage, and we all have courage, even if we have to dig a little to find it.
- Tori Amos

Today, I've been focusing on healing. I've napped, sat in the fresh air, gone for a walk and rested. I look and feel good, I just have to believe my insides are healing as well as the outside.

I talked to the resident this morning about the risks of feeding me on Monday. If the hole isn't closed and food makes it into the abdomen, I could develop another infection. They'll watch for increased pain, fever and monitor my white blood cells for signs of infection.

I'm excited about getting something to eat on Monday, but I'm also nervous. I'm afraid of the potential negative side effects. It's a little ridiculous considering I'm so anxious to eat after nine days with nothing but ice chips. I was also a bit nervous about getting the NG tube out last night, afraid I'd start to feel nauseous without its stomach-acid-sucking function. But I feel great. I love not being tethered, with a sore throat and an elephant nose.

I guess I'm scared because of all the bad experiences I've had over the past week and a half. I've had too many painful and negative things happen to me in the hospital. In the past, I've usually had surgery, recovered nicely, healed quickly and checked out earlier than expected.

Although, when my son was born, I developed a severe form of pre-eclampsia called HELLP syndrome and almost died. But after I was out of the woods medically, I healed quickly and headed home to be a new mom.

With chemotherapy the side effects were awful, but they weren't necessarily unexpected.

I've never had so many unexpected and unplesant experiences at one time - from emergency surgery to a long-tedious, food-free stay - so I'm discouraged and frightened. And as the resident told me this morning, I'm not a "typical" patient because of the cancer making its home in my abdomen. It's insidious and large presence complicates my medical situation. As a result, the doctors can't compare me to others to guess on healing time. I'm unique. I guess I'm a great learning opportunity.

And maybe that's why I'm going through all of this. Maybe the medical system can learn from me, my experience, my reaction to Regorafinib or steroids (or whatever caused this all), etc. But, ultimately, I want them to learn how to make it better - for me and for others with cancer. I want to get better.

And that does take courage. So I'm trying hard to dig deep and find the strength to believe, be positive and not get discouraged. After all I've been through, that's far harder than it used to be, but I'm trying.

Tina

Bye bye elephant woman

2011-10-07T21:41:00.000-04:00

Today came with some unexpected developments. I woke this morning feeling groggy, shaky and a bit down. I think after the progress and activity of the past few days, I knew I was settling in to wait for the internal healing and no real progress until next week. But two big and exciting events happened.

My primary care doctor actually came in this afternoon and told me they're just going to start me on food on Monday. So no CT scan to see if the hole is still there. He said, it'll be seven days from the last CT and 10 from surgery, so there's a good chance it'll be healed. Although when I asked if the risk was low, he said, "I wouldn't say that at all." I don't know exactly what that means (because the doctors zip in and out of my room with little chance for contemplation or questions) but I will ask the resident in the morning.

I'm so excited about getting real food. And by real food, I mean clear liquids at first - jello, broth, juice. Two more days.

Then tonight, I got the NG tube removed. I no longer look like an elephant. I don't have a machine suctioning out my stomach juices anymore. I was a bit nervous about its removal, but the nurse pulled it out quickly and then it was out. It's very freeing. I now only have my two drainage tubes and the IV pole to cart around with me.

Speaking of drainage tubes, one of the fluid collection reservoirs got plugged by a blood clot last night and I was oozing fluid from the drain site on my abdomen. But Michael's eagle eyes discovered the problem, my nurse replaced the reservoir and I seem to be draining properly again. Whew.

I'm tired tonight and I was a bit more sore than usual today. But I've been active too. I went for a long walk today (probably a couple of kilometres) in the sunshine. Again, it was good to get outside. I'll try to get a few blocks of sleep tonight between tests and IV changes so I can rejeuvenate. And over the next two days, I'll work on healing internally. While I may not have a lot of control over that, I'll try to get lots of rest and think positively.

Tina

Almost unbelievable

2011-10-07T04:43:00.000-04:00

In this strange, surreal, not-quite-part-of-reality place, I had an amazing day yesterday. I achieved all three of my goals.

I was so excited when my nurse walked in at 8:30 yesterday morning and said I was going for my PICC. I couldn't believe it was actually happening. By 9:30 a.m., the procedure was done and I was headed back to my room. I've now got the nutrition and all my drugs oozing in. They don't have to poke me any more!

It'll take me some time to get used to the lines and the sleeve of the PICC, but I have no doubt I'll figure it out before long. I also have to figure out what I'm going to use as a cover for the site. It's something I didn't consider before getting the PICC, but it's a minor concern now (and a slight annoyance). It's not like I had a choice, I needed the PICC, but now I'm realizing there's some unpleasant repercussions of the whole thing. Maybe a walk to the cancer centre today will give me some ideas and someone there can talk about tips for dealing with a PICC.

I also got outside yesterday afternoon. Angie and I walked all around the building in the sunshine. I got my exercise and fresh air too. It's amazing how wonderful the wind blowing on your skin feels when you haven't experienced it in a while.

I didn't think I was going to achieve my third goal - a private room - because at 5 p.m. I was still sitting in my old bed. Earlier in the day my nurse told me a man was going to be discharged and I'd get his room, but those discharge orders didn't come through. Then suddenly, I was told a room was being cleaned and it would be mine.

Just after 8 p.m., we gathered up all my stuff - and it's amazing how much stuff one can accumulate in the hospital when there for a while - and I slipped across the unit to a big, private room with a wall of windows that overlook downtown. I've only seen the sparkling lights so far, but I look forward to having sunshine, light and that gorgeous panorama of North London as I sit in my hospital bed. If I'm going to be here for a while, I may as well have a room with a view.

As well, my visitors won't bother anyone. I'm so lucky I get lots of visitors and sometimes I worried about disturbing my neighbours. And then I'd overhear the conversations of my roommates, which I know were private. So, this is better all around.

Yes, I'm up early. I had to go pee and without the catheter, it's all up to me. I was all set to get up and move my way to the bathroom independently, but then I couldn't get the NG tube pump unhooked. I'm squirming, with my legs crossed, and the tube was shoved tight. I wasn't budging it, especially from my angle. I had to call the nurse. But that also got me some overdue pain medication, which is never a bad thing.

My stomach is growling at me this morning. It's a weird sensation not being able to eat. I'm hungry, but I'm not. My tummy sometimes rumbles in protest, but my mind accepts I can't eat. Don't get me wrong, if the docs said I could start consuming food, I'd be overjoyed and ask when breakfast was coming. But I'm amazed how the brain can accept controlled hunger like this. Although, when we walked through the Tim Horton's yesterday, with all it's tantalizing smells, my stomach lurched and loudly rumbled, with an almost painful physical tug. It was screaming, "Feed me!"

My goals for today? Get outside again, get some exercise and mentally cheer for my body to heal on the inside. That's the only way I'm going to get out of this place. And as improved as my situation is, I can't wait to go home.

Tina

Three goals

2011-10-06T10:05:00.001-04:00

I woke up this morning and envisioned the accomplishment of three goals:

My PICC line inserted.
Move to a private room with a window.
Get outside.

By 9:30 a.m., the first goal was accomplished. Yes, I got my PICC line! I'm so thrilled because now I can get everything done through that one port. No more sticks. I can get nutrition. They can draw blood. My poor, bruised arms can heal.

My blood work last night revealed my potassium, magnesium and phosphorous were all really low. So they had to infuse those into me via IV last night. I'll now get them in the liquid nutrition, which should also suppress my appetite. My tummy is growling this morning in protest of no food for so long.

My catheter just came out too. Another little step to freedom and normalcy.

Last I heard, my chance of moving to a private room with a view was looking okay too. A man was waiting to see if he was being discharged. If he goes, I move.

And since the medical stuff happened already, I should be able to get outside today and enjoy a bit of sunshine. So Thursday is looking pretty good so far and I'm thankful.

Tina

Don't hold my breath

2011-10-05T18:25:00.003-04:00

I'm not surprised. I've ceased being amazed by how long everything takes around here. Yup, you guessed it, I didn't get my PICC line today. I stayed close to my room all day waiting for them to come get me for the procedure. So I didn't make it outside to get fresh air or visit the butterfly garden. I didn't even make it off the floor. I only managed to travel several laps around it. Not exciting, and a little depressing.

Tonight, a nurse discovered one of my two IV sites was failing. So she had to find another. Luckily, after two tries she did and managed to draw blood from it before inserting the IV. Unfortunately, it's right in the crook of my arm, which is typically unstable because it gets bothered when bent. Then it sets the tranfusing machine beeping and that can only be resolved when I call a nurse. It's tedious. And then I have to be very careful about how I use my arm. My movement is already a little limited.

The good news is they managed to fill up several tubes of blood so they can run some lab tests. I don't like that I'm sitting here, not eating and they couldn't draw enough of the red stuff to make sure the big fast isn't screwing with all my levels too much. Now they can run the labs. If something is completely out of whack, it only provides more evidence they need the PICC line stat.

I suspect I'll get it tomorrow. While I knew better than to hold my breath about it today, if something doesn't happen by about mid-day tomorrow, I may have to throw a hissy fit. For me, that will probably involve a lot of tears and ranting. It wouldn't be pretty. Hopefully I'll make a trip to radiology tomorrow morning and that will prevent the ugly scene.

Tonight, I'll try to get some rest, not think about food and wait for tomorrow.

Tina