Friday, March 30, 2012

In, up, off and okay

In
I went in for treatment today for the third consecutive week. I ventured into the chemo suite before 8 a.m. so they could take my blood and ensure my levels were okay to proceed. Luckily, my counts were good and I got the Benadryl, ranitidine, dexamethasone and paclitaxel all into my system and was out of there by noon. Then mom and I - she came up to London to keep me company today - went out for lunch.

Even though there's less chemo, accompaned by three, quick-infusing pre-drugs, it still takes half a day to get blood work drawn and everything infused. And the whole procees still leaves me feeling pretty tired. You'd think or lying sitting around getting chemo wouldn't be taxing; but it is.

But it went well, the chemo is in.

Up
I'm feeling more positive today. Perhaps the side effects from the last chemo have finally worn off; just in time for a couple of days of feeling good before they drift back again on late Sunday afternoon. I don't get long so I'll have to take advantage of these days and pray I feel well. Hopefully I can eat heartily (or as much as my shrunken stomach will allow) and be blessed with bursts of energy.

So my mood is more up.

Off
With this new chemotherapy, I get taxol weekly for three weeks and then have a vacation week. This treatment break is next Friday, just in time for Easter. Maybe the side effects will diminish enough and be absent longer so I can enjoy the hoppy holiday. Since this is my first round with this chemo regimen, I'm still figuring out what will happen and what to expect.

But I do know next week, I'm off from chemo.

Okay
As I blogged yesterday, I had to have another mammogram and an ultrasound on my breasts to further assess the results found during my first mammogram and a breast MRI. The doc wanted to check out a particular area on my left breast.

So I trundled off to St. Joe's, had my left breast squished and examined in new and different ways and then a technican examined  it via ultrasound. She must have had difficulty with the scar tissue present from my breast reduction in 1987, because it took 20 minutes of intesive stretching and probing with the scanning device before she was satisfied she examined the area sufficiently. As I was leaving, I heard her talking to another technician about breast reduction, so I figure she was discussing me.

I think she felt sorry for me. I told her I was currently undergoing chemo for the second reoccurence of ovarian cancer, I have the BRCA-1 gene mutation and that my family doc was off right now and I wasn't sure when I'd actually be notified of the results.

So she told me she didn't see anything and all was okay.

The chemo is in, my mood is up, I'm off treatment next week and my breasts are A-okay. In my isolated and self-centred world, that means things are pretty good.

Tina

Thursday, March 29, 2012

Feeling low

Last night, the last few days caught up with me and I was feeling pretty low. Yup, the I-just-want-to-cry-and-feel-sorry-for-myself variety of low. I haven't felt well for a few days and I threw up last night for no discernable reason. My stomach hurts regularly in the evening and the depression is still lingering around the fringes of my mind.

Although I had a burst of energy yesterday morning, when I did my taxes, budget, bills and other paperwork, I was a tired basket case by the time the post-dinner hour rolled around. Good thing I was alone, with Michael schlepping Tara to her horseback riding lessons and Noah hibernating (as he usually does) in the basement.

The jury is still out on how I feel today. I have to go to some appointments, so I have no choice but to get out and about. Just over a month ago, I went for my annual mammogram and breast MRI. Apparently, the mammogram showed something they need to check out further. So today, I head into the hospital to have another mammogram and a breast ultrasound. But I'm not too worried because apparently a high percentage of these tests indicate results where the woman needs further examination, and it usually turns out to be nothing concerning.

All this is because I have the BRCA-1 gene (and it's misbehaving). But it's better to be safe than sorry and if yearly screenings and extra tests are required, so be it.

Hopefully, the activity of going to the hospital, through the tests and having something active to do will pull me a little further out of the depression basement. Of course, then it's off for another round of chemo tomorrow. Luckily, I should have a good day or two before I have to start it all again.

As usual, I have to keep telling myself to take it one day at a time.

Tina

Wednesday, March 28, 2012

Monsterous dream

Before my alarm clock so rudely awakened me this morning, my mind was caught in the complexities of a dream. It was actually more like a nightmare, with me struggling against an unknown, dark entity that kept grasping at my legs, trying to pull me into its unholy realm.

I don't remember a lot of the dream - details of my noctural movie-making don't last in my noggin long - but luckily, I remember kicking and fighting like crazy, freeing myself of the black, faceless beast.

Of course, in my half-awake state, my mind automatically made the connection between this dream and my fight with cancer. The disease is a persistent, evil, black, twisted monster that keeps trying to bring me into the darkness with the pain it causes by its presence. Unfortunately, the treatment to combat it also prods me into the edges of the darkness as well - but at least that's only temporary. I guess I have to venture into the beast's territory to execute my counter-attacks.

I vividly remember the violent kicking I executed in the dream, the loosening of the grasp and the feeling of rising from an inky depth. I recall the feeling of triumph. Let's hope this dream represents my reality and I'm breaking free from the cancer stranglehold to rise to new, and healthier, heights.

Tina

Tuesday, March 27, 2012

Depression goonies

Luckily, so far, the biggest side effect I've experienced from the paclitaxel chemotherapy is the presence of the depression goonies. It's a dragging feeling where I have no energy, no motivation, no interest and feel like just lying around. I feel blah. I'm bored, but don't want to do anything.

Mostly, I just want to crawl in bed and wait for tomorrow to come. What a waste of a day, but I can't help it. I'm also tired, which contributes to the alluring call of my bed.

The depression goonies were here yesterday and I slept for two hours. And they're here today (blech). Luckily, I'm working with my sister this morning on our third annual trip to Myrtle Beach and it's capturing my interest a bit. (Although not only in a good way because it's turning out to be more complicated than in previous years for various travel-site, booking and occupancy reasons.)

Although, I have to admit, this travel booking is a bit exciting because it gives me a fun event to anticipate. I'm a bit nervous about travelling while I'm in treatment, but things have been going fairly well, so I shouldn't expect problems during a four-day jaunt. I'll just put up with any puking and tiredness in a warm, beach locale with access to she-crab soup and bourbon chocolate pecan pie. Sounds like a good plan.

Until then, I sleep, read, lounge, mope and get through the next day or so. If last treatment was any indication, I should be trekking back up from the depression basement tomorrow. It'll be good to be back.

Tina

Monday, March 26, 2012

Embarassing backfires

My dog does it all the time. It happens most often when strangers come knocking at the door; especially if they're men with facial hair because we believe she was abused by a moustachioed fellow before she was rescued by the humane society.

My dog sharts.

Do you know the definition of a shart? Well, combine shit and fart, and you get the grossly accurate picture.

Unfortunately, a couple of times during the last few days, I'm embarassed to say, I too have sharted. The whole process started out-of-the-blue the morning of chemo. I had to run to the bathroom. Unfortunately, my hobbling, let's-try-to-keep-this-in gait didn't get me to my destination fast enough.

Shart.

But I didn't want to take any Immodium because I knew I was getting large-dose steroids during the day that would constipate me. I had a few more diahrrea episodes throughout the day, but I was super cautious, heading to the bathroom whenever gas rumbled in my belly.

Then yesterday morning, the unexpected sharting happened again. What the heck? Since it was two days post chemo, I pulled out the box and took a dose of Extra Strength Immodium. So far, so good.

Oh it's such a balancing act trying to get the bowels to cooperate.

Thank God this all happened in the privacy of my own house. Yet, it's still embarassing (and yet, I write about it, crazy blogger that I am.)

Your red-cheeked friend,
Tina

Sunday, March 25, 2012

Shorn like a sheep

I got tired of my thinning, scraggly, fine, wimpy hair with its balding patches so I did something about it. I took control of the timing of the inevitable and I had Michael wield the clippers on my hair yesterday, giving me a very, very short brush cut.

Now, it's a lot shorter than I anticipated. I instructed him to use the #2 clippers on my pate, without realizing just how short that is. I do look like a cancer patient now. But Michael says even if I used some longer clippers, I'd probably have the same unsatisfactory results because of the patchiness of the hair. So I sigh and accept. It's going to fall out in big, bald patches in about a week and a half, so I shouldn't get worked up about it.

Last night, Noah, the sweetheart he is, said I looked good with my new brush cut. Little did he know how much that meant to me. I was feeling pretty unsettled about the whole thing.

But I have to look at the good points:
  1. I need a drop of shampoo and no conditioner to clean my hair. In a week or so, soap will do the trick nicely.
  2. I won't leave 50 to 100 hairs behind every time I blow dry it in the morning, coating my counter and sink with silky strands.
  3. I don't even have to dry my hair any more (even though it took literally two minutes) in an attempt to create an acceptable style.
  4. I can go to the cancer clinic, borrow one of their wigs and adopt any (available) hair style I choose.
  5. When my hair does start to fall out, I won't have big clumps to clean up. Besides the shininess that appears on my head, I may not notice at all.
  6. My grooming routine involves using my palms to position the little strands in place. How easy is that?
  7. I can nap, get up and look acceptable. I'll have the same great style I had when I laid down.
Of course, my head gets a little chillier and I've had to pull out the hats and scarves to avoid the big stares and cold head; but that was inevitable anyway. As a fellow cancer survivor said to me, it's our way of taking control of the cancer. It's timing of our choosing.

Here are the before and after photos. The before photo actually made my hair look better than it was, because it wasn't good.
Before


 After


Now if I could get rid of the steroid cheeks, I'd look even better. But that isn't going to happen for quite a while (sigh). Puffy and bald(ing) will be my signature look for now. But it's better than the alternative.

Tina

Friday, March 23, 2012

Fight well ninjas

Today I get my second dose of paclitaxel. I head to the chemo suite for an early blood draw - as soon as they open at 8 a.m. - to ensure I've recovered enough from my last blast with the noxious drug. I feel good, so I'm hoping that means all is good on the blood count front.

I'll then get the triple cocktail - dexamethasone (steroid), benadryl (allergy medication), ranitidine (antacid) - to prep me for the chemo. Once infused, I wait 30 minutes so they have time to flush through my system and work before the taxol is administered, which only takes an hour.

Given my early appointment time, which I greatly prefer to the afternoon, Angie and I should be out of there in time to go out for lunch. Sounds like a perfect reward after treatment!

It may sound weird, but I'm grateful to be getting another dose of chemo. I'm anxious for it to start to work and make me feel better.

Go ninjas go! Fight well my stealthy friends.
Tina

Thursday, March 22, 2012

Good reminders

Yesterday, I had an encounter with a generous and kind person who reminded me of three essential lessons I've learned along my cancer journey. They're too important not to share with you again today:

People are generous
I'm continually blown away by the kindness of people in my life. I've blogged on numerous occasions about all the wonderful things those around me have done. I experienced another such act of generosity yesterday when I went to a business. I haven't known this proprietor long, but he wouldn't let me pay for the services he provided. He said that's the last thing I need to worry about when I'm fighting cancer. I was stunned because as an owner, he relies on the business from others (not that my bill was hundreds of dollars or anything). But I was surprised and touched by his incredible, out-of-the-blue act of magnanimity.

Talk, talk, talk
We all need those special people in our lives with whom we can talk. We all have stress, things that drive us crazy, experiences that make us sad/happy/angry/frustrated/ excited that we need to share. Keeping things bottled up, especially if the encounter is negative, is no good for us and can have a detrimental effect on our health. While it's fun and bonding to share good experiences.

I'm lucky to have lots of people in my life with whom I can talk - both personal and professional. It's very important for me to talk about my cancer experience, share my feelings and lament my unfair situation. Now, that's not to say I can talk with the same amount of candor with everyone, but I do have a few close people in my life to whom I can say just about anything. They don't judge. They listen. They offer interesting feedback for me to contemplate.

Yesterday, I was reminded how lucky I am to have all those compassionate, listening ears at my disposal.

A matter of balance
One of the most important lessons I've gleaned over the past couple of years is the importance of balance in my life. While it can be extremely difficult to achieve, with the pressures of work, kids and other responsibilities, it's important to be able to say, "No." It's essential to create me time and we time, and not get tied up in the shoulds. If you need/want to go to the gym, take a cooking class, go on a vacation, carve out the time you need to do it. Make it a priority. Life is too short to say, "I wish I would have . . . "

I'm not perfect at my balancing act because I'm a A-type personality, but I'm far better at letting go and focusing on the people and things that are important. I'm better at letting go of the things that really don't matter. I'm a work in progress with my creating balance in my life - and that's the best any of us can be.

Tina

Tuesday, March 20, 2012

Day four post chemo

I'm sipping on my second cup of java of the morning and perusing my emails. I've had a lovely soak in the hot tub and showered. I've also made the kids' lunches and helped them organize themselves for another day at school. I'd have to say, I'm doing pretty well for day four post chemo.

Of course, I could crash the moment Tara walks out that door and hops on her bike for the trek to school. I never know what these days will bring.

Mornings are better. The rejeuvenating aspect of sleep helps produce a few energy stores for the morning. But by late yesterday afternoon, I was dragging my sorry self around, cooking dinner, and then lounging on the couch and watching TV. My stomach protested the garlic-infused burger I fed it and burping nausea became my companion for the evening. I'll try something a bit less flavourful for our evening repast tonight (at least whatever graces my plate).

I keep expecting to experience the other side effects of the paclitaxel. I especially anticipated the bone aches and pains and restless legs by now. Perhaps I won't get them this first round or maybe they're just taking their sweet time arriving.

My biggest fear with the weekly treatments is I won't have a couple of days to feel better, get my strength back and replenish my mental reserves before I have to go through it all again. While the side effects don't seem too bad this round, I suspect with each subsequent treatment, there will be more residual drug in my system to cause problems.

But I'll have to deal with each one as it comes. I have my little, red Tylenol pills ready and waiting. I think I'm mentally prepared (or as much as one can be).

Mostly I've felt blah so far. I napped yesterday after working on my computer for a while and didn't feel very motivated in the afternooon. I'm getting better at listening to my body and squashing the feelings of guilt at not getting much done around the house, which I think will work better for my recovery.

So, I approach today with no expectations beyond perhaps sitting in the sunshine and enjoying the weather. I'll take whatever happens as it comes. That's the best I can do.

Tina

Monday, March 19, 2012

The benefits of being proactive

A week ago Friday, just after I visited the doctor and learned I was going to be on treatment indefinitely, I was sitting in the hot tub feeling rather depressed. While I am sad that I have no idea when my chemo treatments will actually end - for many reasons - I knew there was more to it. So I delved into my brain and came up with the major reason for my sad feelings.

Swimming.

Summer is coming and I love the water-based activities that accompany my favourite season. I was looking forward to visiting the beach at Port Franks, heading to my sister's to cavort in her pool, going camping at Port Burwell with its sandy, warm beach, and putting up the pool in our backyard and floating with a drink.

Yet because I haven't found a waterproof PICC line cover (just one water resistant enough to go in the hot tub), I knew my swiming activities this summer would be non-existent if I were in treatment. I knew a port-a-cath would allow me to plunge my body in water and participate in all those dreamt-of activities, but figured the doctors wouldn't instigate a surgical procedure just because I wanted it.

But when we were at the cancer centre for the paracentesis, Michael flagged down one of the top gynaecological surgeons, who is very involved in The Run for Ovarian Cancer, and explained how replacing my PICC line with a port would improve the quality of my life. The doc said, this is exactly the out-of-the-box thinking doctors need to help patients get through treatment with the best lifestyle possible. I double-checked that I could swim at a beach, and he said yes. Yippee!

Later on that day, Michael ran into Dr. W who also agreed this was something we could do to make my life better. He indicated he'd start to get the paperwork ready so when I went in for chemo on Friday, I could sign all the necessary forms (his nurse ended up getting it all prepared for me when we went in because it slipped his mind). Apparently, I should have an appointment to complete the procedure in about three weeks.

A port-a-cath - also known as a central venous access device (CVAD) - is made up of a chamber, which is about the size of a loonie, and a catheter, or flexible tube where the medicine or blood travels to and from a major vein in the chest. The insertion requires about a two inch incision and the chamber will leave a small, visible raised area under the skin. But it can remain in place for months or even years.

The procedure is considered surgery and insertion will take up to three hours under local anaesthetic and a mild sedative. I've been advised the entire procedure takes most of the day and I'll need someone to drive me home. It takes seven to 10 days to heal completely and it may take up to two months for the stitches to dissolve completely. I have to avoid lifting or putting pressure on the cath for at least two weeks.

The brochure about the CVAD warns the area may be tender when it's used for the first time but recommends a numbing cream. I think this Emla Cream sounds like a good idea as any unnecessary pain is, well, unnecessary.

I'm a little nervous about the whole insertion because it sounds like a big deal, but I really want the benefits of a port versus a PICC. So I know it will be worth it. In comparison to many the other procedures I've had done, I'm sure this will be a piece of cake, but it still involves invasive cutting into my skin. But like I said, totally worth it if I can swim this summer.

So while I am bummed about the idea of constant chemotherapy treatment, right now my mental viewpoint is I need to do whatever is necessary to start to feel and get better. If that takes multiple doses of taxol, so be it. Adding swimming into my list of allowed (and enjoyable) activities makes life just a little bit better - and the idea of indefinite treatment just a little more tolerable.

It's amazing what some proactive discussions with doctors can produce. Thanks to me requesting a chemo change and Michael approaching the doctors about the port, I feel like we're really moving in the right direction. That feels good.

Tina

Sunday, March 18, 2012

Chemo 1A update

Perhaps it's the combination of the steroids and the taxol, but I haven't experienced the middle-of-the-night waking in months; until last night. I woke up shortly after 3 a.m. with terrible heartburn from some red and yellow peppers I had with dinner last night. After a quick trip to the bathroom and some fruit-flavoured antacids, I expected to quickly drift back into dreamland. Especially since that's been my experience since I started taking two lorazepam before bed.

But instead, I laid - albeit quite comfortably - awake in my bed until 4:30 a.m. (Did you know the birds start their mating calls as early as 4 a.m. That's pretty darn early, even if it does feel like spring.) Thankfully, I did manage to slip back into slumber and remain there until almost 7:30 a.m.

Friday and side-effect update
At least half the time I visit the cancer centre, something happens to complicate things. This time it was my bloodwork. The appointment hadn't been scheduled with the chemo suite, so the nurses there were waiting for the results from the lab (where they'd have to actually stick me with a needle) before calling me in for chemo. But I was semi-patiently waiting for the chemo nurses to call me in to draw blood through my PICC line. It wasn't until about an hour later that someone figure it out and I was called in. I thought they were backed up and didn't want to bug them asking why it was taking so long. They were wondering what was taking the lab so long.

Otherwise, the dosing of the new chemo, paxlitaxel, went without incident and its ninjas are now coursing through my body. Let's hope they have better luck battling those stubborn tumours occupying my abdomen.

I felt pretty good yesterday and managed to eat well. We visit friends we hadn't seen in a while and had a great time, and some great food. I love those days when I can eat.

I went out to breakfast with other friends today and all is still well as far as food goes. I've got a yummy dinner planned while the food still tastes good and stays down.

But I can feel the tiredness setting in and I'm waiting for the expected (and the forgotten) side effects of the taxol to start affecting me. Based on past experience, I'll lose my hair about 17 days from first treatment - so on April 2 or so I'll get out the clippers and trim whatever isn't falling out into a nice brush cut. It will make actually make my life easier and perhaps more beautiful as this stringly, thin style I'm sporting now does nothing for me.

I wonder if I'll become super sniffer again. I wonder if the metallic taste will invade my mouth. I wonder if on the lower dose once a week, will the bone pain will be as bad? Will I dip down into the land of the dark dementors with the depression and deep unhappiness? While I know what to expect, I also don't know what to expect because I don't receive as much at one time. Will the drug reside in my system, making each week progressively worse until I have time to recover during the fourth rest week? I don't know. So it's a matter of waiting and seeing what happens.

But for now, besides the tiredness and some slight stomach upset, I can't complain.

Tina

Friday, March 16, 2012

Starting over again

I have to admit, I'm a bit anxious about my chemotherapy treatment this afternoon. This will be the first one of the new regime, that will infuse paclitaxol into my veins. I know the nurses and doctors have done this hundreds, if not thousands of times, and will have all the right paperwork completed and the correct prescriptions ordered, but for some reason I'm nervous about it. Will I get the right anti-nausea medication for this chemo? Should I be doing something different?

I'm think I'm also anxious because my treatment isn't until this afternoon. Blood is at 12:40 p.m. and chemo is at 1:40. I have to wait all morning, and I don't like that. I want to get up, get going, get it done and over with - knowing there are no complications.

Maybe that's the fear - there will be complications. Taxol is a strong chemo and some people react to it. I had a very slight reaction during my very first treatment back in 2009, but nothing since (and I've had it 11 more times).

I'm also struggling with mixed emotions this morning. I'm happy I'm getting the new treatment; one that may eat away at the tumours in my belly. But I'm sad because it's like I'm starting treatment all over again. Instead of writing, this is treatment 6A (and 6 is the last), I'm writing about chemo 1A. The whole idea of being on treatment indefinitely depresses me. But I'll pull out my mantras:

Do whatever is necessary (that seems to be a new one I've been using lately)

One day at a time

Die cancer die

With resolution, mixed feelings and these fortifying words, I'll head to the cancer suite this afternoon and hope for the best.

Tina

Wednesday, March 14, 2012

Little black notebook

While in treatment, I keep detailed notes during doctor's appointments and chemo treatments, and about the medications I take (and when), side effects and even the food I eat. I take my temperature every day and note if I have a bowel movement, recording all these details in a little black notebook.

When Dr. S and Dr W suggested a feeding tube to combat my vomiting issue, I felt compelled to provide more statistical type data to prove such drastic measure wasn't necessary. So I used the information collected in my handy, dandy notebook to illustrate a few facts.

The reality is, I throw up about once every three days. I don't know if the undigested food takes that long to back up and then needs another way to come out, or if I tend to eat something a bit heavier every third day. Regardless of the reason, the pattern continues to this date, and I saw my lovely chicken dinner again last night.

Quite honestly, I haven't felt well for a few days. My stomach has felt crampy and gassy on and off since Saturday evening. Even though I was drained of fluid on Friday, I think I'm also full of all kinds of gas, giving me a round profile and squishing my poor, abused stomach. Or perhaps, my stomach has been upset from the paracentesis procedure itself, from the long needle being inserted into my abdomen to drain the fluid.

My meds also changed on Friday and I now take a different food processing pill (metroclopramide) and Dr. W reduced my dexamethasone dosage, at my request. Although my home care nurse and sister says most people usually react well to metroclopramide, I wonder if it's taking my body a while to adjust to the change.

I just hope it wasn't the wine I drank on Saturday. I finally gave alcohol a go after six months and quite enjoyed sipping on the slightly sweet vintage we picked up in Niagara Falls last weekend. I'd hate to think that simple, yet enjoyable activity, generated a couple of days of stomach upset.

But like everything along this journey, it's a guessing game. It'll take time, and some trial and error to figure it out; if I ever do.

In my strangely, weird way, I'm looking forward to getting my chemo on Friday. I know the taxol is going to generate the more intense side effects, but for some reason, the toxic cocktail (or the big dose of steroids) makes me feel better for at least a couple of days first. And as I always say, I'll feel better about doing something about the cancer rather than letting it fester.

Oh, I should also mention, one of the side effects of the taxol is alopecia, which is hair loss. So I will go bald yet again. But as I told Dr. W, that's the least of my worries and thankfully, the weather is starting to warm up. So my shiny, bald pate will make its appearance in a couple of weeks. I'm not sure bald won't be better than this skimpy, fine hair I comb over to create some semblance of a style right now anyway. At least showering and my morning routine will be streamlined once again. I've got to look at the positives.

My positives today include: The great weather we're going to have, my kids and I are going to the movies, a good friend is coming over for dinner and then we're going to the Look Good, Feel Better program, and I'm on the right side of the grass. It's all good.

Look at your positives for today. I'm sure you've got some to celebrate.

Tina

Monday, March 12, 2012

Restless

I'm sitting at my computer this morning, wondering what to blog about and realized I feel restless. It's March Break and I have no specific plans for my kids. I wonder what they're going to want to do to occupy their time and worry they'll quickly complain about being bored.

To top it off, Noah's technically been banned from electronics - the one activity that could keep him happily engaged all week - because of an incident at school on Thursday that got him suspended for the first time this year. The fact this is his first suspension is a giant step forward for him developmentally, as he'd been in serious trouble several times before March Break in previous years; but it's also extremely disappointing because we thought (perhaps unrealistically) we were past suspensions for social behaviours. That this happened - with the usual loss of electronic privileges punishment - at March Break just makes my life more difficult.

In addition, I'm never sure how I'm going to feel these days- not even from hour to hour. Even though this is a bonus week off from treatment, at various times, I've felt extremely exhausted, bloated, gassy, uncomfortable, headachy, etc. I would have thought I'd feel better and be able to do more, but I'm still limited by various side effects. Maybe they're from the cancer itself or the drugs I am on, and not the treatment. Sometimes the chemo makes me feel better, at least for a few days.

So I have four and a half days (before I have chemo on Friday afternoon) stretching before me with no specific plans. Originally, when I was going to have chemo on Friday, they were going to go to their grandparents for two days and their Omi was going to occupy them. Now it's me that has to occupy the time and minds of two kids.

I don't feel my best, yet I also feel a bit restless and bored (like I should be doing something constructive). My son's lost electronics and my daughter's leg is just recovering from a sprain (it's almost healed), which makes amusement challenging. I'm going to have to wrack my brain and come up with some activities to prevent them from watching TV all week. I think I may look into movies, bowling or swimming excursions, and see what we can do.

I know I should be thankful for this time with my kids, yet it makes me feel pressured and anxious because I'm not sure what to do and have reduced energy to engage in activities. (They're also getting to the age where they don't want to hang out with mom.)

I also think my restless, anxious feeling are a result of having to wait an extra week between treatments. I'm always eager to kick some cancer butt and having to put this latest dose of chemo off for a week doesn't make me happy. As the saying goes, I want to get the show on the road (the show being this different, and hopefully improved, type of chemo that encourages the cancer to die).

I think a little meeting with my kids is necessary this morning so they can help make a plan for the week. We'll get some ideas for activities with and without me, and I'll do what I can when I can. That's the best I can do and I'm sure they'll understand.

Tina

P.S. We just had the meeting and now we have swimming, a movie and some outdoor excursions planned.  I feel better about the week already.

Saturday, March 10, 2012

2 litres lighter

Dr. Z can add one more person to his long list of satisfied patients. The radiology doc did an awesome job with the paracentesis procedure yesterday and I had just over 2 litres drained from my abdomen with minimal discomfort. While I'm still round, the equivalent of a big, bottle of Coke removed from my belly makes me more comfortable.

The ascities itself was hand delivered by Michael to the Dr. D of the Translation Ovarian Cancer Research Group. He was bugging me last week, while filming the commercial for The Run for Ovarian Cancer, to give them some fluid for research purposes. I'm sure he was surprised when my husband arrived at the lab with the bottles of ascities for study purposes. I'm more than happy to provide it, especially if it's may lead to discoveries. It also makes going through the procedure more rewarding because I know I may be helping.

This morning, I'm a little sore at the puncture site and where the fluid was pressing against my ribs. But hopefully that will heal quickly. Of course, the giant needle hole means I can't go in the hot tub for about a week until it scabs up. I'll miss the therapeutic and relaxing effects of the warm waters. I may just have to bug Michael for a massage or schedule one with my therapist over the next week to keep my muscles limber and the knots from monopolizing my back.

The fluid removal means my stomach isn't as squished and perhaps I'll be able to eat and drink more this weekend as we head to the spa to celebrate some birthdays, play some cards, eat some cake and enjoy some good company.

Life is good. Get out there and enjoy it.

Tina

Friday, March 9, 2012

No chemo for me

At 6:45 last night, when my 3:30 doctor's appointment finally ended, my doc broke the news I couldn't have chemo today. We were all set to go, excited to start a new treatment plan when he took a second look at my blood work to discover my platelets are way too low at 64 to proceed. (According to Wikipedia - in very mathematical language - it looks as though normal is between 150 and 450.)

While I will still get paracentesis today to drain my round belly, my first chemo treatment on the new regime won't happen until next Friday.

As an FYI, the ascities drained will be sent to the Translational Ovarian Cancer Research Group for study. I will be providing raw materials for the very researchers we raise money for with The Run for Ovarian Cancer. How cool is that?

The plan
Dr. W was open to switching my treatment. He said, since my CA-125 hasn't decreased (it's still at 223) and the ascities continues to build, it's reasonable to change our plan of attack at this point. We discussed the different options and decided to go with paclitaxol alone weekly for three weeks in a row, with the fourth week off for recovery.

When I asked about going the carboplatin and paclitaxol combo route, because it's worked in the past, he said, while that was a good point, he isn't confident adding carbo to the taxol will create any better results because I'm receiving carbo with my treatment now and it isn't creating the response we want. He also mentioned he'd like to try something different than what I've received before.
 
Part of me is okay with that reasoning, but another part of me is drawn to the tried-and-true carbo/taxol treatment I know worked in the past. We tried something new with the cisplatin/gemcitabine route and it only stabilized the cancer. Now, if we didn't use that treatment, the cancer could be out of control and spreading throughout my body right now, so it may be working in its own way. But I do want something stronger, harder, faster, better. So that's why I want taxol. It's how and with what it's administered that's up for debate. In the end, I'm confident enough in my doc's recommendation to try the weekly taxol treatments. 
 
He said the study data surrounding the weekly taxol treatments indicates the lower dose more frequently can also work better than a big dose every three weeks. On the bright side, the side effects should be less intense with a lower dose, as well. But on the downside, there will be fewer days with no side effects because I'll be receiving the treatment more often. So I'll only have a couple of days of feeling good before I have to be hooked up again to the IV bags of toxic chemicals again.
 
But I have no idea at this point how I'll respond and I guess, like anything on this journey, I'll have to take it one day at a time.

He also said taxol has greater antiangiogenic activity than the chemo I'm currently receiving. An angiogensis inhibitor is a substance that inhibits the growth of new blood vessels. As a result, it should help with the symptoms like ascities, which has been the bane of my existence. It should also work against the new cancer cell growth.

So we're going to try the taxol alone for a four-week cycle and then reassess how I'm responding to the treatment. I like that Dr. W is open to options, and that we're working toward the same goal of making me feel better and doing more than simply stabilizing the cancer. If needed, we can also talk about going to the carbo/taxol route, if we aren't seeing any results from the taxol alone.
 
I also asked about clinical trials and whether I qualified for anything, but there's nothing appropriate for me right now. But he said he's always keeping his eyes open. That's good.

The results of the appointment made me happy because I feel like I'm moving forward again with a treatment plan to beat back the cancer, but it also made me feel sad because I can't see the end of the road I'm travelling down. I was supposed to be heading into my sixth and final round of chemo today (although without the results I want and need), but now I have no idea how long I'll be on treatment.
 
When I asked Dr. W if I was on treatment indefinitely, he said yes. So I have no end in sight, which makes me feel a bit depressed. But as the nurse said, I can take a treatment vacation for a few weeks at any time if I want to do something like a vacation. I may consider that when I'm feeling better and feel up for a jaunt somewhere warm or exotic.
 
I need to remind myself of my old mantra - one day at a time. Today, I get paracentesis to give my poor squished belly some room to accept and process food. Then I enjoy my weekend; we're headed to the spa to celebrate some birthdays and with less fluid, I'll be able to eat and drink more easily. Then next week, I'll enjoy the first four days of March Break with my kids before I head to the chemo suite on Friday to start tackling this disease another way. One day at a time.
 
Tina

 

 

Thursday, March 8, 2012

Talk about change

Today's the day. Late this afternoon, I see Dr. W to talk about our plan moving forward. We'll review my bloodwork, which I donated on Tuesday, to see how my blood cells are holding up to treatment and how my CA-125 is responding. Unless my CA-125 dropped significantly or there's some other reason for not changing the type of chemo I'm receiving, I'm going to ask we switch.

I don't know exactly what that means, but I think a change in how we're tackling this disease will make me feel better. Currently, I feel stuck in limbo, continuing to try something that is only maintaining the status quo. As I've said before, that's not good enough.

Then I have chemo tomorrow morning - whatever type that may be - and paracentesis in the afternoon. I've gotten round and full again, so I have an appointment with interventional radiology after I'm done chemo to drain some of it off. The fluid will go to the research docs for study. I'm happy the disgusting bi-product of my tumours will be put to some good use.

Tomorrow is going to be a long and invasive day, but hopefully, the lack of fluid will help the (hopefully) new type of chemo ninjas directly attack the stubborn tumours. Let's hope the new chemo contains these type of sneaky and effective ninjas.




Tina

Wednesday, March 7, 2012

Gratitude

I haven't acknowledged lately how grateful I am for all the support I continue to receive. I have an entire village of family, friends, doctors, nurses and random people who make this journey with cancer easier. Over the last several months - and really from the day I was diagnosed with cancer - amazing individuals have stepped forward (sometimes at entirely different times) to help me and my family.

Over the past few months, I've received meals for my family, flowers, baked goods, cards, gifts, emails, lunches out, hugs, good wishes and donations for the Run for Ovarian Cancer. I've appreciated every thoughtful gesture, every single person who has taken the time to think of me as I struggle and fight this terrible disease.

Fighting this cancer is more difficult this time. I feel weaker physically and more beaten down psychologically. But feeling the love and support of all my family and friends makes it easier. I know I'm never alone.

I want to make special mention those who work on The Run for Ovarian Cancer board and also send my heartfelt thanks to those who are part of the Team Tina fundraising team. This group is working on special events and activities to raise money for Team Team and the 2012 run. In the past, I've been in remission during the fundraising timeframe and was able to participate. This year, I've got some amazing friends who are carrying on the torch without me (and doing an amazing job). Kudos to you all - and to those who are participating in the events to raise funds for ovarian cancer research.

This morning, I'm filled with gratitude because I know I have all of you. I have those who read and silently wish me well. Then there are those of I can call on when I'm feeling down or at the end of my rope. Some of you will help me celebrate the little successes and others will share a tear or two when I'm sad. But I need you all, and I thank you from the bottom of my heart for being there.

Tina

Monday, March 5, 2012

Jaunt

Recently, I've complained about being stuck at home, with the cloud of treatment and invasion of side-effects hanging over me. I've talked about my desire to pack my car and drive away, to explore parts unknown or simply get out of Dodge.

Well, Michael and I did that this weekend with a little holiday jaunt. It was only one night. It was only Niagara Falls, two and a half hours away. But it was away, without the kids.

It was tiring and relaxing. We walked down to the falls and got sprayed with the freezing-cold mist. Then we had to walk back up to the hotel level, which involves a hill with quite an incline. At least it was a huge incline for my poor out-of-shape legs. I'm also probably near my lowest red blood cell counts, which means less oxygen for my muscles. Let's just say, it was a challenge and, despite the cold, I was dripping sweat by the time we got back up to the street.

We discovered (for about the third time), we are not gamblers/slot machine people. We blew $5 (I know, I know, not a lot) in about three minutes and I hated every minute of it. Michael couldn't stand the sounds in the casino and we high-tailed it out of there pretty darn quickly.

The whole trip was good deal because we bought a package from one of those discount travel sites (TravelZoo) that included money towards dinner and breakfast in the chi chi restaurant in the hotel (Of course, the amount only covered one entree for dinner; but it did cover both buffet breakfasts.) We also got casino and tourist attraction shuttle tickets, two lovely winery tours and money towards the spa (which we didn't use).

We had a beautiful view of the horseshoe falls from our window on the 15th floor and, as a result, got to enjoy the light show that shines on the cascading water. Unfortunately, because of high winds on Saturday night, the nightly firework show was cancelled. We would have had a stellar vantage point.

All the activity left me exhausted. I even needed a little nap in the hotel room yesterday morning while Michael strolled through Niagara Falls. Then bedtime came quite early for me last night, when I fell asleep reading my book. But it was worth getting away with the love of my life.

Speaking of him, it's his birthday today and I want to wish him happy 49th birthday here on my blog. I know many people cringe at that number, saying, "Oh, it's my last birthday." I have the exact opposite view. Yay! Michael is 49 and I look forward to enjoying every day with him until he turns 50, 60, 70 years old. It's just a number, the years of experience you have under your belt. The number of hours, days and months you can enjoy life with the ones you love.

Happy birthday, my gorgeous husband.

Tina

Friday, March 2, 2012

Lights, camera, action

Today I get to be a superstar. Or as close to one as I'll probably ever be.
This afternoon, I'm part of the team videotaping a commercial for The Run for Ovarian Cancer. I've got four lines, which I've memorized, for the public service-type advertisement to inform people about the run and encourage them to sign up. I did the one that aired last year and it played on the local (CTV) television station.

After it started to air, I had people approach me, telling me they saw me on TV. Yay! If it gets the word out about the run or encourages donations, I've done my job.

I'm think I'm also going to provide additional footage and answer a question or two for another video. Even with my steroid-inflated face and thin hair, I have no problem going on camera, talking about my disease and begging for money.

For some reason, some women are afraid to talk about ovarian cancer and their plight with the disease. I will talk to anyone who will listen because we need to spread the word about the symptoms of the silent stalker and encourage funding for research into this often overlooked, yet deadly disease. So I'll film commercials, do interviews, talk at events or do whatever it takes to get the word out there.

The Run for Ovarian Cancer is so important to me because it funds ovarian cancer research right here in London. The money raised directly supports a researcher, whose focus is finding better ways to detect, treat and hopefully, one day, cure this cancer that is often detected late and, as a result, has a 60 per cent five-year mortality rate. My cancer was detected late at stage IIIC, therefore the statistics are stacked against me.

This year is the 10th anniversary of the run, and the goal is to raise $160,000. This amount will bring the event's overall fundraising total to $1 million, which again, directly supports ovarian cancer research.

Team Tina, with our bright yellow t-shirts, will be out in full force again this year. Join our enthusiastic group at this non-competitive run at Springbank Gardens on Mother's Day, Sunday, May 13. Or donate to this worthwhile cause by sponsoring one of our runners. Help us reach our $1 million goal.

And watch for the commercial in the coming weeks. Hopefully, I don't flub too much and the process goes smoothly. Regardless of how many takes we need, we'll get the footage required so we can tell everyone about this very important event.

I'd better go gather up my hairbrush, powder puff and lipstick (on a pig) for my big break. Wish me luck or perhaps that should be, "Break a leg."

Tina

Thursday, March 1, 2012

Complementary therapies

Warning - This is just my opinion and I'm not an expert on any of this information. You may disagree: That's your perogative.

I believe in conventional treatment for my cancer, including various forms of chemotherapy and radiation (if it was an option for me). Since, I've participated in two clinical trials, and am eager to get to the stage where I can be considered for another, I obviously even believe in experimental ways of tackling the tumours.

I'm of the opinion non-traditional therapies can help, but don't believe they can replace the tried-and-true medically backed treatments being used in cancer centres today. I know these methods aren't perfect - including using chemicals to kill the cancer while attacking healthy cells - but they're the best we have right now after years and years of continuing research.

But I do believe complementary therapies can help, especially psychologically, if not physically. I enjoy my therapeutic massages and know they can get my blood moving to flush out my lymphatic system. I also greatly enjoy these body rubs because they make me feel better, and I'm sure they get some endorphins kavorting through my system. That's all good.

I've also been attending reiki sessions at the Wellspring Cancer Support Network. According to Wikipedia, Reiki is is a spiritual practice developed in 1922 by Japanese Buddhist Mikao Usui, which since has been adapted by various teachers of varying traditions. It uses a technique commonly called palm healing or hands on healing as a form of complementary therapy and is sometimes classified as oriental medicine by some professional medical bodies.Through the use of this technique, practitioners believe they are transferring universal energy (i.e., reiki) in the form of ki through the palms, which allows for self-healing and a state of equilibrium.

I'm a bit of a skeptic when it comes to practices such as reiki, but I've gone to sessions and felt the extreme warmth from the energy from the practitioner's hands during his touch. I've gone in with a headache and it's been gone afterwards. I've felt better after the session than before. So I go in with an open mind and accept whatever happens. Then I make my next monthly appointment because even if I'm getting benefits from simply lying still and breathing, it can't hurt.

I also believe some foods in a person's diet can help prevent cancer or its regrowth. Studies have proven items such as: dark chocolate, green tea, red wine, soy, broccoli, grapes, tumeric, tomato-based products, garlic, brussel sprouts, cauliflower, walnuts, cranberries, foods high in omega-3, citrus fruit, ginger, etc. can help prevent cancer. I do believe if you follow a balanced, generally good diet in life, you can boost your immune system and be stronger, and perhaps avoid getting cancer or help you fight it.

But I have problems with alternative therapies when they're meant to be the sole way of tackling cancer. I have issues with those who tout you can cure cancer solely with diet. There are lots of different schools of thoughts on the "right" diet for a cancer patient. I have problems believing a vegetarian, macrobiotic, juicing, alkaline, non-diary, raw-food or organic diet will cure cancer.

I also am not sure I follow the theory a person's diet is the sole cause of cancer. I think other external environmental or genetic factors are also necessary. My love of Diet Coke, red meat and sugary foods did not cause my disease, nor does it keep it from reoccuring. I have a defective gene. Other people are exposed to various toxins and cancer-causing elements that start the proliferation of mutant cells in their bodies.

While I'm expounding on my beliefs, I also don't think the drug companies have developed a cure and are withholding it from the masses because it will eat into the huge profits they obtain creating the current chemotherapies. I don't believe that secret could stay hidden. Individuals aware of the cure would eventually have someone they love with cancer and use it to help them beat it. People outside the inner knowledge circle would become aware and the secret would come out. Individuals aren't good at staying silent. Nothing travels quicker than a good secret or gossip. Let's face it, if there was a secret cure, wouldn't Steve Jobs have been one of the ideal candidates?

I'm not sure executives at drug companies could be so cruel to withhold a cure from the millions and millions of people afflicted by this disease every day. I find it hard to believe they're all heartless bastards that only care about the almighty dollar.

I know, I'm very opinionated today - and lots of you may not agree with me. But that's okay. Everyone is entitled to their beliefs and, especially when afflicted with cancer, their way of dealing with and treating it. Individuals need to do their research and follow what they feel is right for their situation, regardless of what others around them believe. Those around them need to be supportive. That means offering opinions, but not forcing them on cancer patients, because it's their lives.

About a year ago, one of my ovarian cancer friends decided to give up on the traditional chemotherapy because they were affecting her health and go with a diet option as her sole treatment. While I didn't agree, I supported her and cheered when the changes made her feel better. Unfortunately, she died a few months later (ironically craving a cheeseburger she no longer had the stomach to eat). She may have died at that time anyway, regardless of treatment option she chose and I don't blame her death on her choice. She did what she believed was right for her at the time. Every cancer patient should have the right to make those decisions.

My blog only mentions two rather tame complementary therapies - massage and reiki - but there are dozens (if not hundreds) out there individuals are trying every day, including hormones, coffee enemas, herbal treatments, drugs designed for different purposes, mind-body methods, etc. You never know what I'll be offered and try in the future.

The bottom line is, I currently believe in the traditional and research methods out there for tackling this horrible disease. So I plan my trek back to the cancer centre next week to meet with Dr. W. to try another form of chemo to shrink my cancer cells. And if that doesn't work, I'll ask for another one . . . and another . . . and another.

In the meantime, I'll continue going for my wonderful massages and body-calming reiki treatments, and try to eat well; especially that dark chocolate.

Tina