Quest for balance

This is the week. I'm going to try to start to get my life back on track. It's just over five weeks post chemo and while I know the tiredness is going to continue for a while yet (and perhaps increase with the clinical trial), I have to start incorporating my old usual activities into my life.

I'm going to start with the gym. I hope to go at least three times this week - starting this morning. Even if I hop on the gentle elliptical trainer or pedal away on the bike, it'll be something. It'll be more exercise than I have been doing.

Yeah, I know I did that one day of exercise a few weeks ago but I was sore and tired afterwards, and didn't keep it up. Perhaps I started too soon. Perhaps I started too hard. As I've said before, I'm my own worst enemy and I have awfully high expectations of myself.

Now Cuba was a good warm up to the exercise routine because I had to climb stairs, carouse around the resort, walk in the sand and swim in the sea. But I also ate and drank to my heart's content (in other words, way too much).

I'll start with the gym and then go back to work. While I've seriously gotten used to being off, I'm looking forward to going back to work. I'm just waiting to hear from the rehabilitation specialist to learn about the plan to ease me back into the work routine.

Working will tire me out at first and, I'll have to plan the gym and work on separate days. But eventually, I'll be able to accomplish both in the same day again.

I know I have to listen to my body and not overdo it. I can't immediately be the same fit person I was before the onset of the disease.

On a funny side note, it'll be interesting to see how I cope with hot flashes in the middle of exercising. While I'm wearing a scarf on my head this morning, I may lose all sense of discretion pretty quickly and whip it off to let my sweat-soaked head breathe.

Wish me luck. I think I'm going to need it. Between the weight gain and the loss of stamina, this is going to be a long, uphill battle.

Tina

I'm thankful

In the spirit of Thanksgiving, I've been thinking about all the things for which I'm thankful. God has blessed me with:

1. My wonderful husband, beautiful children, loving parents, awesome sister and the rest of my unbelievable family. They've been an incredible support over the past six months and I love them all. We attended the Thomas family Thanksgiving yesterday, had a delicious meal and good conversation.

2. My unbelievable friends who have also been stunningly supportive and present throughout my cancer journey. I thank God he put such amazing people in my life. Friends are the family you choose.

3. Living in Canada. While the country isn't perfect and everyone isn't as fortunate as I am, it's an amazing place to live with clean water, plentiful food, freedom and government-funded health care. I love this country. Going to a place like Cuba only reinforces how lucky I am to live in Canada.

4. My job, to which I'll be returning soon. London Life is an amazing place, with amazing people. I like my job and get great satisfaction from it.

5. The doctors, nurses and health professionals who've treated me. I'm thankful for their professionalism and compassion. They made this cancer journey (which continues) easier.

6. Those doctors, teachers, parents and others who support our entire family with Noah's mental health challenges. It's a long and frustrating road, but it's easier to navigate with the support of our community.

7. The lack of lasting ill effects from the chemotherapy. I can live with the numb spot on the top of my right hand. While I still occasionally have muscle pain or feel extremely tired, the occurrences are less frequent. I'll have an ECG on the 20th to ensure my heart wasn't damaged, but I don't think it was. So I'm extremely lucky.

8. The reapperance of my hair. Michael astoundingly told me this morning that it seems to have grown overnight. Yay!

9. The opportunity to reconnect with Michael and relax on my vacation in Cuba. It was exactly what I needed, when I needed it.

10. My life. I'm so thankful I'm alive to celebrate this Thanksgiving and that my cancer is in remission. I pray it stays that way.

On this Thanksgiving weekend, stop a moment and think about all the things for which you're thankful. It's so easy to race through life without remembering all the wonderful people and things in it.

Happy Thanksgiving,
Tina

Precious platinum

If platinum is so valuable, why don't I feel like the luckiest woman in the world?

Platinum, with its silvery-white appearance, is strong and therefore ideal for jewelry, but as a hair colour it leaves a lot to be desired.

Yup, a good portion of my new, fuzzy hair is platinum. The good news is, my hair is growing back, albeit at a much slower pace than I'd like. The bad news is the shade.

I discovered my first grey hair around age 18. Since I haven't seen my true hair colour for about 10 years, I knew the grey's infestation would have spread. But even I didn't expect the extent of the silvery strands' spread.

I think the hair on top is light brown. But it depends on the light because sometimes it looks white. It's hard to tell because my hair length is 1 cm (maximum) in any given spot. And I swear there are fewer follicles, but no more seem to be making an appearance so perhaps it's just that longer hair covers more of the scalp.

At this point though, I'd be happy with any hair that covers my scalp. I'm tired of being bald. I've tolerated it quite well for six months, but enough is enough. Besides, it's getting cold and my poor pate chills easily.

While my eyebrows are returning quite nicely, my poor eyelashes still have to make their appearance. I think the loss of eyelashes was the hardest for me. No little hairs to protect my eyes and prevent me from looking like a googly-eyed alien. While I tried to fake eyelashes with my artfully applied eyeliner, I wasn't entirely pleased with the result.

I know I have to be patient, but it's getting more and more difficult every day. I'm done treatment, so my hair should come back already. I think that I'll feel more normal and more capable of having a normal life if I look normal. (Yes, normal is such a subjective word, but you know what I mean).

So I welcome the slllooooowwww return of my hair, even if it is platinum. Besides, when I have enough of it back, I can choose the colour of the silky strands.

Your still mostly bald friend,
Tina

Human guinea pig

After serious deliberation of the pros and cons, I've decided to participate in the clinical trial for Sorafenib for two reasons:

1. I couldn't tolerate the idea I was going to have few follow up tests and only see my oncologist for follow up every three (and then every six months) to ensure the cancer doesn't come back. I didn't notice the symptoms of cancer the first time around until it was a stage IIIC. It worries me that I'd be left to my own poor detecting devices again.

By participating in the clinical trial, I'll see the clinical trial doctor, Dr. W, monthly and he'll examine me, take my blood pressure, test my CA-125 levels (monthly) and review the CT scans, which I'll have done every eight weeks. Before starting the drug trial, I'll also have an ECG to ensure my heart wasn't damaged by the chemotherapy.

2. The drug may work.

It's designed to stop blood flow to new growth. So new tumours wouldn't get the blood supply they need to develop. (I'm assuming I'm not having any other new things grow in my body at this stage of my life, so stopping that blood flow is irrelevant). It's been used successfully on kidney and liver cancers, and Bayer is testing to see if it will work on the reoccurrence of ovarian cancer. I've also read about clinical trials to see if it'll stop breast cancer development. That would just be a bonus.

Mind you, it's a double blind study, which means neither the doctor nor patient know if they've got the drug or the placebo. I guess we'll find out if I start getting some side effects.

Yes, I blogged about all the horrible side effects written on the informed consent package a while ago. But after talking to Dr. W and hearing the most common - as opposed to every possible reaction they've discovered could happen on the drug - and his reassurance he'll watch me like a hawk, I feel better. The most common side effects are tiredness, nausea, a redness, a rash, pain or inflammation on the hands and feet (that may result in peeling), higher blood pressure (they'll take my BP every week for the first while) and manageable diarrhea.

Angie and I laughed about that one yesterday. What is manageable diarrhea? How does that differ from the unmanageable? She said there's even questions in the medical world about the definition of diarrhea - frequency, consistency, explosiveness?

As I type these side effects, I'm thinking to myself, I don't want any one of these. But if anything becomes unmanageable or too painful, Dr. W can adjust the dose, give me a medication or cream to make it more tolerable or I can decide to withdraw from the study at any time. Who knows, it may be perfectly manageable.

But then again, if it's too easy to tolerate, I'll think I'm on the placebo. But, the placebo wouldn't come without side effects because the mind is a powerful thing and can conjure up imaginary symptoms when none really exist.

I'm also going on the clinical trial because it may help me now or in the future. And it may benefit other ovarian cancer patients. All cancer drugs started out with clinical trials. This may be the wonder drug women need to fight the return of this dastardly disease.

Angie and I did ask about the clinical trials for PARP inhibitor, designed to replace the damaged BRCA gene so it kills off mutant cells that develop into cancer. But apparently that clinical trial is currently for women in second or third remission.

I'm thinking positively right now and believing this cancer WILL NOT come back (so I won't qualify for the PARP inhibitor clinical trials), but maybe in the future they'll learn these PARP inhibitors work wonders for BRCA patients and make it available to all of us. Or maybe, one day they'll conduct a clinical trial for those in first remission.

Aaahhh, the wonders of science.

So my next steps are to spend a lot of time at the hospital on Oct. 20, getting my blood drawn, my ECG and the CT scan of my chest, abdomen and pelvis. Then I see Dr. W on Oct. 27 to review the tests to make sure I'm okay to start the drug. Then get my monthly supply.

Yes, I know I'll continue to visit the cancer centre a lot, but in a way, that makes me feel good. It makes me feel as though someone is watching out for me, catching all the signs and symptoms that I may miss.

Okay, so I'm a bit of a human guinea pig, but great discoveries have resulted from exactly these types of situations.

So I move forward into the next - and very different stage - of my cancer journey.

Tina

Back to chaos and cold

Yes, I was back Tuesday night and should have blogged yesterday, but I didn't even get on the computer to clear out the 140 emails until yesterday evening. I've been going since we walked in the door at 7 p.m. on Tuesday night.

Okay first things first. My vacation was awesome. The sun was shining, it was hot, the snorkelling was amazing (we saw a lionfish!) and the food and drinks were awesome. Michael and I were so relaxed and we really needed that since we've been on high alert tension since the middle of April. We laughed, made silly jokes, made some new friends and reconnected as a couple.

The resort was awesome too and I'd go back there in a heartbeat. Not because it is the nicest resort I've been to or has the nicest beach or pool, but because the Cubans who work there are absolutely phenomenal and friendly. So when can I plan my next trip?

So we picked up the kids Tuesday night, unpacked and then crashed because we'd been up since 5 a.m. to check out and catch the bus to the airport. When we got off the plane, we were dismayed at how cold it is here. Yeah, I know it's October, but I was hoping it was going to be a glorious Indian summer.

While we were away, Tara contracted head lice (lovely) and her Omi treated her, combed through her hair and did all the nasty activities that accompany those pesky critters. But then the school called again yesterday morning to say there were still nits in her hair (say what!?).

So yesterday involved retreating the hair, combing through it twice, and washing and vacuuming mattresses and furniture. My washing machine has also been working overtime (with hot water no less). Yesterday I also sprayed tea tree oil around to deter the little critters from spreading. I hate them! And of course, they come to the kids with clean hair so my little monkey got them (her Omi probably had her showering daily when she watched over them).

I also had an appointment with the breast specialist yesterday to discuss my options. Dr. B. said those with the BRCA-1 gene have a 70 to 80 per cent chance of contracting breast cancer. For those who've had a hysterectomy and bilateral salpingo-oopherectomy, the risk is cut in half.
So my chances are 35 to 40 per cent of being diagnosed with it.

My options are:

1. Close monitoring through yearly mammograms, MRIs and visits with the specialist -I'm just waiting to hear back as to when her secretary has booked my appointments.

2. Double mastectomy with reconstruction - This option reduces the chance of contracting breast cancer to five to 10 per cent (lower than the general population). Dr. B told me they usually recommend using the fat from the belly to reconstruct the breasts (literally getting a tummy tuck - which I could use - and a breast reconstruction at the same time). Bonus.

However, it's a 12-hour surgery involving the breast specialist and two plastic surgeons. I'd spend five days in hospital and then it'd take two to three months to recover. Ugh.

The next step is to visit the plastic surgeons to see what type of reconstruction they'd recommend (the tummy tuck option may not end up being the best one, although Dr. B seemed to indicate it was). So I'll do that before making any decisions.

Besides, she recommended I wait at least two years before undergoing this type of procedure to make sure nothing else happens with my abdomen (to make sure the cancer doesn't come back).

She made some other interesting comments:

- Just because I've had ovarian cancer doesn't mean I won't also get breast cancer. It isn't like a quota system, you get one or the other. While that seems completely unfair to me - like isn't one enough - it needs to be part of my considerations.

- The risks increase the older you get. So my mom, while lucky that she hasn't contracted ovarian or breast cancer to date, isn't out of the woods. In fact, her risk factor increases every year.

- Those with the BRCA gene have an almost 100 per cent chance of contracting ovarian or breast cancer! Holy cow. With those kinds of statistics, it makes sense to take preventative steps in advance of onset of the disease.

So right now I'm just weighing my options. It's probably a good thing I have to wait two years because I'm not sure I could face another invasive surgery and long recovery right now. I'm just starting to feel better after the summer from hell (my new nickname for summer 2009). But it certainly doesn't hurt to research my options.

It's off to talk to the clinical trials doctor today. I'll let you know what happens tomorrow.

Tina

Paradise, but not perfect

The setting is idyllic with the turquoise water, swaying palm and banana trees, soft white sand and warm breezes. Yet all is not perfect in paradise.

Of course, no one could expect perfection anywhere. It's often too humid here, we had a giant tropical rainstorm on Thursday night, the food is different, etc. But as they say, you don't go to Cuba for the food.

While the local people working at the resort are wonderful and we've met some new friends (mostly British and French Canadian), I am appalled at the number of smokers. About 80 to 90 percent of the guests here smoke. Are all inclusive resorts magnets for smokers or do non-smokers feel the urge to light up when on an all inclusive holiday. It's a mystery to me. They light up between courses at meals, on the beach, in the lobby, at the outdoor bars, etc. Since it makes me feel very sick with an almost instant headache and rolling stomach to follow, and because it triggers Michael's asthma, we often have to vacate public places when we're not down wind of the smoke.

Heath wise, all is not perfect either. But since I'm recovering from my fight with cancer and still have remaining traces of a cold, it's to be expected. I'm noticing some lingering side effects rearing their ugly heads. I'm sill numb on that patch on the top of my right hand. Obviously, it didn't want to be alone so it convinced my moustache area (the bit of skin between my top lip and my nose) to join the numbness party.

I still get extremely tired, so there's no late night partying planned for this trip (good thing that's really not our style). Because of the humidity, my hot flashes sometimes turn into rivers of sweat cascading down the fuzz growing on my head. We were enjoying an after-dinner drink in the lobby last night when a bad hot flash hit. I had to run to our room to use a cool wash cloth. By the time I arrived, five or six streams of sweat ran down my face and my nose was running. It was disgusting.

The humidity - or the steroid residue - puffs up my feet and ankles like a blow fish. It's not really a hinderance, just annoying when I want to wear a particular pair of shoes to dinner. And I got disgusted with myself when my lack of upper arm strength prevented me from pulling myself out of the pool (for the first time in my life). To top it off, sometimes my stomach can't tolerate the all-you-can-drink portion of the resort. While I'm enjoying my share of drinks, I've only been slightly tipsy once. Perhaps that's because they're spread out over the hours in the day. Perhaps I'll try to remedy that tonight and have a really good drinking night to celebrate.

Don't get me wrong, I'm not complaining, just observing. We knew this was going to be a different vacation. One where we take it easier, set the pace a bit slower and chill.

Michael and I always travel to any new destination with a sense of adventure and we have the attitude, "hey, I'm on holiday" so we'll eat when we're hungry, drink when we're dry, sleep when we're tired, swim when we're hot. Besides, who can complain when we can go horseback riding every day. Although my horse seems to have one speed - slow.

Sorry this post is so slow but we ran out of Internet minutes in the middle, then we had to go riding and now I have to go because Michael is waiting for me at the beach. Aaaah, that's the life.

Love from Cuba,
Tina

Hola from Cuba

Hello from Cuba. It's beautiful and warm here. We've been having a fabulous time eating, drinking, laughing, drinking, snorkelling, (you guessed it) drinking, eating - you get the picture.

This vacation is exactly what Michael and I needed after the summer from hell. We've laughed, talked, made friends, relaxed, slept, ate and enjoyed a few drinks. You'll be amazed to know that we toast someone with almost every alcoholic beverage we've consumed. We have a lot of people we love and are thankful for, so we have a little bit of drinking to do. I've discovered a new favourite drink here in Cuba - frozen orange daquiris. Yum!

Seriously though, we're having a great time and relaxing a lot. I've noticed from posts and Facebook, the weather in London is rainy and cold. It's so hot here that my shirt is soaked just going to breakfast. It's their wet season so it's humid. But we cool off by going in the pool or the ocean.

Gotta run. We've got some more people to toast.

Love you all,
Tina