Friday, October 30, 2009

The sucky gift

It sounds like an oxymoron, but cancer is the ultimate sucky gift. I've been mulling this in my head since Tuesday and a friend reinforced the thought in an email last night.

Yes, cancer sucks. Yes, I'm incredibly disappointed and angry it isn't all gone. Yes, I hate that I will continue to worry about it and may have to fight the good fight again (and again?). And it sucks that I feel I've let everyone, including myself, down by not coming out on top of this (yes, I know this is completely irrational, but I never claimed to be logical all the time).

So where does the gift part come in? It's not something I'd put on my Christmas list. Hey, how 'bout you give me a nice, big dose of cancer to help me figure things out? But it's like when you get that handmade, knitted sweater from grandma. You're incredibly disappointed it's not the cool electronic toy you wanted, but you smile sweetly and say thank you. But over time, you appreciate its warmth, its beauty and the obvious love she put into creating it just for you.

Cancer helps me put life into perspective and focus on the people, events and things that are really important. Don't get me wrong, I don't have it all figured out. In fact, it's a daily learning journey. But I do know I'm learning to let go of the little things, forgive, tell people I love them more, appreciate the beauty of nature, say no, stand up for myself, appreciate the small stuff, be kinder to myself, etc.

I've said it before, it's so easy to get caught up in the everyday busyness. In fact, I was already starting to do just that before I didn't get a clean bill of health on Tuesday. I let little, really insignificant matters bother me, was short with those who matter most and I focused on moving forward with the mundane, rather than planning with purpose. In other words, I wasn't incorporating some of my want to dos in with the have to dos.

Tuesday's news made me realize again, that I have to incorporate my dreams into everyday living today. So I'm mulling over what it is that I want to accomplish. I haven't quite figured that out yet.

And it reminded me to incorporate the little, but good, things into my day. Lots of hugs and I love yous, coffee with friends, prayer, a session with a social worker, a kind word to someone (or even myself), writing, contemplation, laughs, a computer game I enjoy, dessert, etc.

We all have to enjoy and appreciate the little and big things that make life worth living.

Cancer's gift is also a better understanding of myself. The disease halted the hamster wheel I was running on and gave me time to delve into my brain, heart and psyche. I know myself better now than ever before, which helps me understand what is really important to me.

So like grandma's sweater, thank you cancer for the warmth, beauty and love of life.


Thursday, October 29, 2009

What I need

I know yesterday's blog was a shocker for everyone. I was devastated I had to write it. I was on the cancer-free party bus, ready to shake it down with everyone that I licked the evil demon. Now I feel we're all dissappointed, left standing on the platform as the party bus pulls out.

Everyone seems to be processing the news since I received few responses yesterday. My inbox was eerily quiet. And I can imagine no one knows exactly what to say or do. So I'm going to try to help by telling you what I need.

I need a small dose of strong sympathy (hey this really sucks, let me give you a hug, keep fighting because those tests don't predict the future, let's drink a couple of bottles of wine together, etc.). Then I want to try to recapture my new normal.

I started that process yesterday and I have a plan in place. I lined up an appointment with a social worker to help me process the news and deal with the conflicting emotions swirling around in my head. I'm devastated, shocked, angry, hopeful, sad, energized, worried, lonely . . .

I also got my back-to-work plan almost in place. I told my rehab consultant I was ready to go back next week, thinking if I don't have to worry about the side effects of the clinical trial drug, then let's get the show on the road. But Noah has the flu (hopefully not N1H1) so we're waiting an extra week to ensure I'm healthy. On a side note, I'm wearing a pretty yellow mask as I care for him and the poor guy is quarrantined to the basement (that's where his bedroom is so don't start thinking dungeons).

At the suggestion of my rehab consultant, I've also got a personal trainer on standby for a couple of sessions to ensure I'm not going to hurt myself in my quest to get back in shape. I'm sure Theresa will work me hard and help me figure out how to be the best Tina I can be.

But I have to tell you, my quest to be thin has taken a back burner. My metabolism sucks. So to lose weight I have to watch every single morsel that passes my lips and cut out all the really yummy stuff. So I'm not going to deny myself just to see a particular number on the scale. I will try to eat well and exercise so I'm healthy. But I'm also going to enjoy the richness and satisfaction of food, drink and dessert.

I'm attempting to gain some sense of control with all this active planning since I have little control over what is going on in my body. So I'm going to try to let it go, place it in God's hands and carry on with life.

Please, please, please don't feel sorry for me. Sympathize with me and feel a twinge of sadness that the results aren't all we hoped they'd be. Then help me celebrate life with goodness, friendship, laughter and love. It's the best any of us can do in life anyway.


Wednesday, October 28, 2009


Dr. W threw me a curveball yesterday - and I wasn't prepared for it. According to my CT results, my abdomen isn't clear and therefore I don't qualify for the Sorafinib study. What the results mean, we don't exactly know right now.

I was in shock when I heard the news. I was completely convinced everything was gone and was mentally preparing for the side effects from the clinical trial drug. Then I got scared (again) and for the first time, cried in a doctor's office (and in the van on the way home).

But I've had time to partially process the news and have come to realize it isn't necessarily bad. It's shocking and it could turn out to be bad (eventually - and hopefully a long time down the road).

So what did the CT scan say?

- There remains a few areas of peritoneal tumour. So the microscopic dust that the chemo should have eradicated may not be gone. I have to admit, this line in the report sucks. Come on, the chemo had to have done its job. There wasn't hardly anything left after surgery.

- There is a hypodensity along the dome of the right lobe of the liver. I had this growth before the surgery and it was much bigger then. I trust that if Dr. P found it suspicious, he would have removed it. So perhaps it's just some imperfection I have.

- There is a small cystic lesion along the vaginal vault measuring approximately 2.5 x 1.2 cm in size with punctate areas of calcification and residual tumour cannot be excluded. Okay, to me cyst means fluid-filled sac, not cancer. Maybe the CT folks are covering their butts to say residual tumour cannot be excluded. This must be something that formed because of the surgery.

- Spleen, pancrease and kidneys are normal. Yay! A side note mentioned I have gallstones (the least of my worries) and I have an umbilical hernia with small bowel within it. So maybe I popped an internal stitch during recovery and part of my small bowel eased into the hole. I guess if it gets to be a problem, we'll deal with it later.

The overall impression on my CT scan results is there has been significant improvement since the last one in April, when my cancer was diagnosed. No kidding!

When he gave me the news, Dr. W said these results are common and he's not alarmed. He said yes, I'm in remission and he doesn't recommend any treatment based on these results. He said it could be scar tissues, non-cancerous growths or cancer. We don't know.

So I'm going to have another CT scan in three months to see if the size of the growths has changed - smaller, bigger or the same. Apparently, doctors don't usually recommend more treatment until the ovarian cancer signs reappear. Of course, I didn't notice a lot of symptoms and explained that to Dr. W. He said if the ascities was my indicator, watch for that.

The good news (even though it's not a definitive marker) is my CA-125 is 10. Remember, below 35 is normal and at one point it was over 950. So that's positive.

Yes, Michael and I are alarmed by the news. Yes, I am going to go to counselling to figure out how to deal with this. But I realized, I can get on with a "normal" life much quicker now because I don't have to worry about the side effects of the clinical trial drug. I need to continue to live my life and not be paralyzed by the fear that it's coming back.

Most women don't get these CT scans after they're done treatment and continue on with rebuilding their lives. I know this information just because I wanted to be part of a clinical study. Maybe I need some hypnosis to make me forget so I can blindly carry on like every other ovarian cancer survivor.

Dr. W said 95 per cent of ovarian cancer survivors get the disease back. They treat it like a chronic disease and if it does come back, there are treatment options. And, the researchers are working every day to discover new and different ways of treating this disease. Apparently, just last week, researchers announced a breakthrough in the fight against ovarian cancer. Work harder I say!

So, my goal right now is to process this as best I can and move on. I need to live and enjoy each day and let tomorrow bring whatever it may. I'll deal with it then. It's the best I can do.


Tuesday, October 27, 2009

Fake it 'til I make it

"Catch the beam and shine it out even if you feel too dark to bathe in it. Before long you will acknowledge and accept your greatness, without apology." Kris Carr, Crazy Sexy Cancer Survivor.

Fake it 'til you make it. I've heard that phrase 100 times in my complicated, dance-step intensive BodyJam classes. When you don't know the steps or can't quite do them yet - fake it. Eventually, if you keep trying, you'll make it.

In other words, even if I don't feel strong, healthy, in control, confident and beautiful, act as if I am and my body will follow. I need to believe in and live that message right now - without apology. Especially as I embark on the Sorafinib clinical trial and attend my first BRCA positive support group today.

Carr says, "confidence and self-reliance come from a deep trust in yourself." I'm working on it. The trust I used to have in my body has been badly shaken. So I guess I'll fake it until I make it.

She admits she still hears that pesky little voice chirp, "You'll never get there, you will always be sick and you will die of cancer." But she scrambles those negative thoughts before they take root and focuses on believing she's healthy and strong. She acknowledges it takes courage to build confidence because "the only way to really do it is to put yourself out there and take risks."

So I need to get out there, start taking some risks again, believe in myself and my strength, and leave the negativity behind. At least if I start with me, I can face the rest of the crap that gets thrown my way. Besides, I can only change me. I'm responsible for my attitude adjustment.

As for the rest of the crap in my path, I spent the day at the hospital with family yesterday as my mom visited two doctors and had a procedure. At this point, there's lots of talk and little action, which is frustrating. We have speculation, but no answers. She does need at least one surgery and another test under general anaesthesia. I just wish the doctors could coordinate things and get moving. So at this point, we again wait and pray.

But in the meantime, I can't get stuck in the muck of negativity - for neither me nor my mom. It doesn't do anyone any good.

So I need to believe in myself (and God) and then project that to the world. Then maybe my thoughts will become reality.

In the words of Henry Ford, "Whether you think you can or you think you can't, you're right."


Monday, October 26, 2009

It's completely unfair

It's the start of a new week and hopefully I won't be as grumpy. I feel sorry for Michael since he gets the brunt of my bad moods. While I can speculate a couple of reasons, I can't put a my finger one reason why I was so down.

I'm still dealing with this feeling of limbo and the irrational fear those little specks of cancer have decided to unite, form a team and take over my abdomen again. Now that they're not being blasted by the toxic chemotherapy, I envision they're rising from their hiding places and plan to wreak havoc. With every little twinge, cramp and pang, I think cancer. Never mind they've been blasted to kingdom come.

I'll have reassurance tomorrow when I see Dr. W. He'll have the results of my ECG, CA-125 blood test and CT scan to confirm that it's all in my head.

I think the fear the cancer will return is common among survivors and along with that, the fear they'll have to fight it again - maybe not as successfully.

Another reason for my funk may be I'm finally thinking about the injustice of it all. I'm not a nasty, chain-smoking, scotch swilling, pork rink crunching, puppy kicking couch potato. Why did I get cancer. It's not fair. I worked out, I tried to eat right, I tried to be good to other people. Why did the bad karma of cancer decend on me?

Yes, I enjoy my daily Diet Coke, an unhealthy meal every now and then, and it's a fact that chocolate will always be a treasured part of my diet. But I was healthy and believe in the golden rule - treat others the way you want to be treated.

They (whoever they are) say God only gives you what you can handle. With Noah's bipolar and subsequent suspensions, Michael's ankle woes and job frustrations, my cancer battle and now my mom's health struggles, I'm ready to cry uncle. But I trust He has a reason for this.

I'm also afraid of my reaction to the Sorafinib since some of the side effects can be pretty debilitating. I'm particularly worried about the potential for my feet to develop little blisters around the toes, which will make walking, let alone exercising, a painful activity.

But I have to be optimistic as I start this clinical trial, believing it'll work and the side effects won't be too bad. I've been in contact with a woman who's been taking the drug for six months with amazing results. She's got ovarian, liver and lung cancer, and the drug significantly reduced the size of her tumours. So I have to at least give it a shot because it may prevent new tumours from taking root in me and it may help develop a breakthrough in the fight against cancer.

Sometimes I want to be selfish, pretend the cancer was never here and just carry on with life. As crazy as it sounds and despite all I've been through, it sometimes still feels surreal that I had cancer.

As I make my way through this week, perhaps I'll work through some of these mental roadblocks and my mood will improve.

Here's hoping,

Friday, October 23, 2009

Tina proclaimed thankful Friday

I feel better today. It could be because people reached out to say they care (thank you to those who did), because it's Friday or maybe I'm at the end of that low in my emotional cycle. Regardless of the reason, I'm thankful.

The bad news is some of the bone pain is back in my wrists and arms. My nurse warned me it could return periodically. I have to admit it's much easier to tolerate with a positive attitude - and a little Tylenol.

But as a result, I'm going to skip the workout I had planned for today. I'm listening to my body, even if my mind says go exercise and lose some of that weight.

In appreciation for the end of my down feelings, I'm declaring this thankful Friday. I know we Canadians just celebrated thanksgiving, but it's important to regularly remember the things we have rather than than focussing on what we want. So here goes my slightly quirky list for today:

1. I'm having lunch with a dear, caring friend today who picked up the phone yesterday to say, "Hey, what's going on? Can I help?"

2. My children were far more cooperative and less argumentative last night.

3. My mom finally has two doctor's appointments on Monday to try to figure out what's going on with her health. Maybe we'll get some answers so we can move forward.

4. My black pants fit (okay, so maybe none of the others do and but I'm thankful I can wear these).

5. I have a phone meeting with the rehab consultant today. Hopefully this afternoon, I'll have a better idea of when I'll return to work and therefore be able to plan my life.

6. It's pizza day at my kids' school and I don't have to pack lunches, which is a good thing since I don't have any lunch fixings in my house. :)

7. I've narrowed the list of Florida homes (and as a result, reduced that squeezy, stressful feeling).

8. God hasn't forgotten me and shows me signs of His goodness daily. Sometimes, I just have to open my eyes to them.

It's so easy to forget all the wonderful things in our lives when we focus on what's missing. So, on this Tina proclaimed Thankful Friday, take a minute and (once again) identify a thing or two for which you're thankful. Focus on the simpliest blessings (a good parking spot, discovering a misplaced shirt in the back of your closet, an extra hot coffee, a good haircut, a hug from your child, etc.) and be thankful.

In every life rain must fall, if only to it make us appreciate the daffodils it nutures when they bloom in the sun.

Happy Friday.

Thursday, October 22, 2009

Irrational and crazy

I've now gone from grumpy to downright irrational - and I don't know why. I get irritated at all the little things around me from the messy house, to the fact that all my kids want to do is play computer games, to small things Michael does, to the fact my hair isn't growing in fast enough. And all these irritations pile on top of one another, making me feel like I'm being squeezed, which makes me lash out and then sink into my self-contained pit of annoyance.

Even doing the Zumba class at the YMCA yesterday didn't help much because the instructor didn't cue and changed moves OFF BEAT! Grrrr. Sure, I felt good from the sweat and moving my muscles, but not from the class itself.

Am I depressed? I don't know. Have I spent far too much time by myself in my house? Maybe. Yet when I get irritated, all I want is to be by myself. Am I travelling in a circular pattern of craziness?

I guess this is part of the post traumatic stress disorder Kris Carr mentioned in Crazy Sexy Cancer Survivor. It's part of my post-treatment anxiety or depression. As she explains, "Cancer is a roller coaster: One minute you're up, the next you're plummeting to the ground."

She encourages cancer survivors to allow themselves three days to wallow in any one emotion and then move on. I'm now working on day four and I'm not sure what to do about it - cry, throw things, exercise, talk to someone, have coffee with a friend, run away from home? I don't know.

At this point, I feel like I'm a crazy, speeding train running off the track and ready to crash. I'll pump the breaks and hope they work.

The only thing I do know is that my family will have clean clothes because I'm doing laundry and trying to find a Florida rental home today (an exercise in stress, frustration and pressure). That's all I can promise today.

But hopefully by the time my family comes home, I won't be irrationally angry anymore and can be a better mom/wife.


Wednesday, October 21, 2009

Recapture the positivity

I've been a bit grumpy the past 36 hours (since Monday afternoon). The kind of grumpy where I want to hide behind a book and ignore the world. A state where I get angry way too quickly and irritated at the littlest things. I don't like it when I get like this.

When I realized how grumpy I'm being, I tried a little self talk to convince myself that I have to enjoy each day and live positively. Although I preach that (maybe a bit too much), I know from firsthand experience that doesn't always work. As humans, we do experience a myriad of emotions, sometimes without logical rhyme or reason.

I'm a rollercoaster of emotions and I've gone into a hunker down phase. Perhaps it was a good thing I spent numerous hours at the hospital yesterday by myself. I encountered few delays for the first two procedures (blood draw and ECG) so I had a couple of hours to kill before the CT scan of my chest, abdomen and pelvis. I couldn't eat or drink during those hours, so I planted my butt in a chair in one of the surgical waiting rooms and read my book.

But the alone time I need as an natural introvert didn't recharge my batteries and make me ready to face the world as it usually does. Maybe it was the hospital environment, because I'm still grumpy and withdrawn.

Maybe I'm worried about the results of the tests, the side effects of the upcoming clinical trail and living up to expectations (mostly my own) when I go back to work. I think I'm also putting pressure on myself to eat right (went well for a few days) and exercise consistently (four days last week, no days yet this week). I'm also charged with finding a house in Florida for a March Break vacation with my in-laws. The house I wanted isn't available now, so I'm starting almost at square one with the research. It makes me tired.

That's another thing, I was really tired after all my appointments yesterday - even though I sat around most of the time. So now I question what I am really capable of at this point.

While I can't always be positive - and honestly, what human can - I have to shake this negativity and turn my mind around. For me, it's okay to be grumpy for a day or two, but I can't make it a habit. I don't want to consistently live like this. Today, I'm reminding myself that I AM strong and capable. I can accomplish a lot and it's okay to take rests.

My goal for this morning, is to recapture the positivity. I'll let you know tomorrow if I was successful.


Tuesday, October 20, 2009

Test day

Today I get a series of tests to ensure I'm okay, and therefore eligible to paticipate in the clinical trial. The availability of these tests is one of the reasons I signed up for the Sorafinib trial. I want to know what's happening with my body and ensure the nasty cancer stays away.

I can't eat or drink four hours before my CT at 2:15 p.m., so I'm swallowing my last drink of water and mouthful of food. Considering I constantly drink throughout the day, this is going to be a long four hours. Of course, I will get to drink those two big containers of radioactive solution when I arrive at my appointment. Oh, the anticipation.

Since I also need to get blood work and an ECG done, I'll head to the hospital shortly.

I'll bring my book and my positive attitude. It's going to be a day of waiting, but I can handle that.


Monday, October 19, 2009


I started getting some pains on the weekend and I'm a bit freaked out. I have abdominal cramping (like I'd get IF I had a uterus) and some external burning and discomfort. Now my mind is going crazy, thinking that something is wrong.

Yes, I know, I wrote about the power of positive thinking last week and trust me, I'm trying to be positive. I'm trying to believe this pain is just my abdomen's way of protesting the four workouts I did last week.

Part of my problem is I feel betrayed by my body. I think, hey I treated you right, worked out regularly, ate well, drank water, gave you lots of sleep and in return you grew cancer! What the heck?!

So now, whenever I feel any little twinge, I jump to irrational conclusions and think the cancer is back running rampant in my body. Hey, it let it manifest itself in the first place, what makes me think it won't do it again. This is especially true, since I didn't feel the warning signs of cancer in the first place.

In Crazy Sexy Cancer Survivor, Kris Carr wrote, "My shrink taught me that cancer patients go through the same post-traumatic stress disorder as soldiers or rape victims. At first I felt guilty about comparing my problems to such a vicious crime. But then I realized she was right. I was in shock and felt completely violated by my own body."

So my feelings of betrayal are completely normal. It's weird to think of my mind and body as separate entities and that one can betray the other. I'm sure that's how it's always been, but for me, it's never been as black and white as it is now.

Carr also mentions that like those who return from war, cancer patients feel as there is no place for them because few completely understand the toll of the battle. I have to admit, I do feel different than almost everyone else. Maybe that's why talking to other cancer survivors (support groups, friends who've had the disease, etc.) is so valuable. I guess I just have to find a new place in society - because I'm certainly not sitting on the sidelines.

As for that pain, I'm going to call my cancer nurse this morning and get her take on the situation. I'm also thankful that I go for a bunch of tests tomorrow - ECG, blood test with CA-125 and CAT scan tomorrow - to ensure I'm fit and healthy to go on the clinical trial. If something serious is going on, the tests will confirm it.

As for now, I'll try to be positive (and pray).


Friday, October 16, 2009

Harness the power of your mind

You are what you think.

Yup, your mind is a powerful tool because it can control your body. So pay attention to those big conscious thoughts and to those little niggly ideas your brain transmits about you.

Kris Carr, in Crazy Sexy Cancer Survivor, encourages readers to write down positive affirmations about themselves. If you think them, you believe them. I'm really good at generating negative thoughts about myself (again, those unrealistic standards) and have to work at generating the positive self-talk. But on my cancer journey, I've always believed I am strong and I can fight.

We've all heard that negative thoughts create negative energy and reality, and positive thoughts create a positive energy and reality. We all enjoy experiences where things go our way. And isn't it funny how positivity generates more positivity?

My attitude has been very, very important over the past six months. I have no doubt it helped me beat this disease. I believe it made my chemo easier, especially when I practically skipped into treatment and said, bring it on. I think it also lessened the hold the side effects had on me.

I will continue to be as positive as I can in this fight and in life because, let's face it, it's no fun being miserable and complaining all the time.

I challenge you, on this snowy Friday, to write down five wonderful things about yourself (I'm attractive, smart, strong, fit, caring, funny, creative, loving . . . ) and post it where you can see it throughout the day. I've got mine on my desk here at home.

Where your mind leads, your body will follow. We all deserve a positive and rich life, because as I've said before, it's the only one we're going to get.

Believe in yourself because you are your best advocate.

I believe in all of you.

Thursday, October 15, 2009

Live life

"Why is it that we're so scared to live and yet so afraid to die? We thirst for change and yet choose to stay stuck." Kris Carr, Crazy Sexy Cancer Survivor

I discovered this book in the library yesterday and promptly sat down to read the first 10 pages or so while waiting for Noah. On Valentine's Day 2003, Kris Carr was diagnosed with slow-moving, inoperable liver and lung cancer with no cure and no definitive treatment. Her diagnosis prompted her to live life to the fullest while having stage IV cancer. She's captured her journey through a documentary film and at least two books. She's quite the firecracker, who humourously explores how cancer changed her life.

Within the first few pages of her book, I found Kris expressed so many inspirational and provoking thoughts. It's a workbook, with exercises designed to shake up the readers and propel them into true, unabashed living. The lessons are valid whether you have cancer or not.

She admits that before her diagnosis, "I spent a good portion of my young life loping around and marking time, treating life as if it were a dress rehersal and I was the understudy."

It's so easy to get caught up in the day-to-day activities of life, moving from one day to the next without much conscious thought. We go to work, get groceries, clean the house, cook meals, do laundry, shuttle the kids from here to there, etc. While this is the necessary stuff to manage our lives and pay the bills, it isn't necessarily living (unless perhaps you live to clean).

It's important to incorporate truly enjoyable stuff into the mandatory activities. And then again, ask yourself if they're truly mandatory or could you change some aspect to make them more satisfying? Is your job fulfilling? Can you cut back on the activities you truly dread? Can you shift an event slightly to bring more enjoyment to it? Add some music, wine, friends, books, challenge, stimulation, whatever to mix it up. It's worth thinking about.

Carr mentions fears often hold us back. She encourages the readers take charge of our fears and give them their 15 minutes of fame by writing them down and then burning the list. By acknowledging them, we can better understand them (and perhaps soothe them or prompt action to eliminate them) and identify those unhealthy or irrational fears.

While some fears are valid, it's important not to let fear control us. By letting fears rule our lives, we allow chaos to rule. Carr calls it "soul constipation."

All this is pretty profound for someone who has been told she has cancer with no cure and no remission. You'd think that condition alone would produce immobilizing fear. But as she so aptly says, "Life is a terminal condition, cancer patients are just more aware of it."

She refuses to let cancer break her spirit or feel like a sick person, but chooses to be more alive, beautiful and sexier (hence crazy, sexy cancer). That's a good lesson. We only get one go around in this life. Choose how you want to live it.


Wednesday, October 14, 2009


I'm feeling a bit anxious these days because I'm in limbo. The social worker warned me about this, but it's a weird sensation actually being in it.

I think it's because I feel a little bit better almost every day. Some days I have setbacks, which is expected (although I don't like them), but for the most part the chemo side effects are subsiding. Besides, my nurse told me today, I'll have the numbness and bone/muscle aching on and off for about six months. So, it's something I'll may have to tolerate for a while yet.

I also haven't started on the clinical trial so I'm a bit anxious about how that drug will affect me. I hope all the side effects are manageable and I'll be able to stay on it. But of course, I won't know until I start taking it.

To ease some of the unknown about my return to work, I called the disability office today. My contact will refer my case to a rehabilitation consultant, and then I'll work with that person to develop a plan to ease me back into work. I'm excited and yet anxious because I hope I can handle my job without taking a nap at my desk every day.

I think the main crux of my unsettled feeling is I feel I've beaten cancer. And my attitude is that it's not coming back (fingers crossed) so I let's get on with life.

So all the unknowns are creating a unsettled feeling in my body, which I'm sure will pass. It may be difficult, but I know I have to sit back and enjoy the recovery time. Besides, I'm sure when I'm back in the thick of the activities and issues of normal life, I may wonder why I was in such a rush.


Tuesday, October 13, 2009

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.


Sunday, October 11, 2009

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,

Saturday, October 10, 2009

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,

Friday, October 9, 2009

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.


Thursday, October 8, 2009

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.


Saturday, October 3, 2009

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,

Thursday, October 1, 2009

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,