Tuesday, January 31, 2012

When I hit publish

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

Monday, January 30, 2012

Mental shift

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

Sunday, January 29, 2012

The official report

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

Thursday, January 26, 2012

Stable

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

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.

Wednesday, January 25, 2012

A jug of radioactive juice

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

Tuesday, January 24, 2012

Living with dying

"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

Sunday, January 22, 2012

A little embarassing

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

Friday, January 20, 2012

Do you believe in miracles?

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

Thursday, January 19, 2012

Little joys

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

Tuesday, January 17, 2012

Appreciate little and big

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

Monday, January 16, 2012

Sandpaper torture

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

Sunday, January 15, 2012

3B update

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

Friday, January 13, 2012

Eating low-residue

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

Thursday, January 12, 2012

It's chemo day

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

Wednesday, January 11, 2012

Jinxed

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

Tuesday, January 10, 2012

A bump back on track?

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

Monday, January 9, 2012

Three litres

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

Saturday, January 7, 2012

Have drugs, can travel

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

Friday, January 6, 2012

Day one post chemo 3A

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

Thursday, January 5, 2012

To make it to 46

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

Wednesday, January 4, 2012

Drink, drink, drink

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

Tuesday, January 3, 2012

Changes

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

Sunday, January 1, 2012

Hopeful 2012

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