Tuesday, May 31, 2011

Carrying on

The shock my cancer may be back wore off over the weekend. The overwhelming, I-can-barely-concentrate grief dissipated on Thursday. It helps I have lots of work to do and the activities of my kids to draw my mind elsewhere, shifting my focus to normal life things.

That's not to say I'm not worried or I don't question every aspect of my body several times a day, but I'm existing in a bit of a holding pattern. For example, I sat outside this evening, enjoying the wonderfully warm weather wondering if my belly is expanding. I can't tell. But worrying does me no good because there's nothing I can do until June 28, so I may as well try to live life as normally as possible until then.

But it's hard. Most of the time my rising CA-125 seems surreal. The cancer can't possibly be coming back, I think to myself. But my mind is also preparing for the possibility of more treatment, whatever that may entail. As a result, it also nudges me toward a place where I envision getting sicker and sicker, and then dying of this stupid disease.

I try to remain positive, but when I have so little control, I sometimes think it doesn't matter what I want or do. It's like this wretched affliction has a mind of its own. Hopefully some medical breakthrough does what previous treatments have not - prevent the disease from coming back. I also regularly pray for a miracle. Little old me still talks to God, even though part of me is still angry with Him.

My fellow cancer survivor, Nancy, wrote a great blog about cancer and anger today. Check it out. She captures the sentiments perfectly.

I know I'm rambling a bit tonight, but that's how I feel. My thoughts are all over the place and I'm somewhat emotional. It's all part of the process - one I wish I wasn't experiencing - and my current reality.

My sister tells me to hope for the best and prepare for the worst. That's easier some days than others. Tonight it's not something I can do. I'll try again tomorrow.


Friday, May 27, 2011

Blissful ignorance

I almost wish I didn't know my CA-125 was rising. I kinda yearn for the blissful ignorance I was operating under, without the knowledge my cancer may be growing. I want to return to carrying on with my normal life. I was doing just fine, thank you very much.

Now I think about cancer many, many times a day, and what a reoccurence may mean to me, my family and my village. I fixate on every little twinge in my body. I even measured my abdomen yesterday so I'd be able to tell if the ascities was coming back. How sad is that? Instead of focusing on eating well and exercising to reduce the size of my oh-too-ample belly, I'm watching - and waiting - for it to grow. That's wrong.

On the bright side, a possible reoccurence has re-prioritized things in my life. As I predicted, I got sucked into the vortex of work. I'm working on a stressful, high-priority/short timeframe project and I was freaking out about it. Now I'm not. Don't get me wrong, I'm still working hard on it, but it's not my key priority any more. My life, family and friends have bumped work further down the list, where it belongs.

A good friend wisely reminded me on Wednesday that work will not be my legacy, and while responsibility is one of my character traits, I have to ensure I'm more responsible to me than to work. If I die (heck, even if I don't), no one is going to remember me for the awesome job I did on XYZ project.

It's sad it took my rising CA-125 for me to remember what is most important in life. I hope you take my illness as a wake up call if you're spending too much time on the things in your life that really don't matter in the long run. Remember to have fun, do things you enjoy, take time for yourself, and focus on the people in your life that are important. You owe it to yourself. Life life to its fullest.

Happy Friday.


Thursday, May 26, 2011

The other side of the microscope

I find it ironic that a report about phase II of the Olabparib study came out on Friday. As I learned the disappointing news my CA-125 is rising and my cancer may be making a reappearance, the researchers expressed excitement about the results of the Olaparib clinical trial.

You may ask, "What are they excited about?" My response is, "Why am I not reaping the benefits of the wonder drug?" Oh but according to the material published in the report, I am. Yup, I'm just as shocked as you.

As I swallowed the handfuls of big white capsules morning and night, I believed they would give me years more to be cancer free. I sweetly talked to the meds as I tossed them in my mouth, encouraging them to work their magic and kill the cancer. When I got the results of my last CT scan six weeks ago to learn the cancer had shrunk even more since I ended chemo, I praised God the Olaparib was doing its job.

According to the research findings, it did do the job. But I believed the results would be tougher, stronger, faster - and most importantly, last longer.

You see, the report optimistically reported Olaparib does work and improves outcomes in ovarian cancer.

"Results from a phase 2 trial have shown that it significantly prolonged progression-free survival in patients with platinum-sensitive relapsed serous ovarian cancer.

Patients who received olaparib as maintenance therapy achieved a progression-free survival that was nearly 4 months longer than those who received placebo, according to data presented at a press briefing held in advance of the American Society of Clinical Oncology (ASCO) 2011 Annual Meeting."

Significantly prolonged? Four months is significantly prolonged?! My reaction: These researchers haven't stood on the other side of the microscope. They don't understand the viewpoint of an ovarian cancer survivor and her family. Sure, four months longer is better than no months, but in the whole scheme of things, it's peanuts.

Success is determined by median time to progression. The olaparib group averaged 8.3 months and the placebo group (which I doesn't exist in my study) was 3.7 months. Considering I had my last chemo on Oct. 8, I am right around the 8 month mark. Of course that depends on what they determine as progression-free survival. Would two high CA-125 markers be deemed as reoccurence or would a CT scan confirming evidence of disease and growth be the determinant? My relapse time would depend on the criteria.

In the end, I'm disappointed and pissed at the results of the study. I'm not encouraged by it like the researchers. This is NOT success in my books. I want something that will work long term so I can live life in remission for years, not months. I keep hearing ovarian cancer is a chronic disease that can be managed, like diabetes. This is not good management. I want better!


Wednesday, May 25, 2011

Emotional update

When I call on my village for support, they practically trip over each other to send emails, provide hugs or lend sympathetic ears. I'm a lucky woman.

As you can imagine, Michael and I had a rough day. We're still in shock (and maybe even in a bit of denial). We're so very, very sad. If sadness could ooze out of our pores, we'd be covered in it. And we're angry. I am so angry I could throw a good old-fashioned temper tantrum complete with screaming and kicking. I'm tired tonight, but this morning I felt wound up so tight I thought I'd lose it if I was asked to do something I considered inane. And trust me, right now a lot of issues and events that held some significance to me yesterday I think are absolutely ridiculously stupid wastes of time today.

Nothing like a good old crisis to put life back in perspective.

Of course, I'm now over analyzing every twinge in my body. That back ache (that I've had several times over the past year or so) could be the cancer. Or that discomfort in my abdomen, which is a regular occurrence, is a warning sign. It doesn't help I have a cold and my sinuses are draining into my belly or that I'm super upset, which makes my gut ache more. I've come to the conclusion I can't rationally assess anything going on with my body right now.

But yesterday, despite the cold, I felt pretty darn good. Go figure. Nothing like a doc telling you the cancer could be back and growing in the deep dark recesses of your belly to send you into a psychological tailspin.

While I say I can't fight another summer or pull out quotes from articles talking about the lack of proof of positive thinking, I don't really mean it. I will fight as long and as hard as I possibly can. I will be positive again, and believe in myself and the treatment. But not right now. I need time to grieve and come to terms with the fact the cancer might be back.

Of course, my awespme sister researched other causes for elevating CA-125 levels last night. One plausible cause could be an internal infection. Maybe my gallbladder is acting up. Maybe some other organ (hopefully one of the non-essential ones) is infected. I'd be happy to undergo some surgery to fix it up, and perhaps remove the gallbadder and fix the hernia, if it meant I didn't have cancer again. It's amazing what becomes perfect acceptable when the alternative is far worse.

The next five weeks, and possibly beyond, are going to be an emotional roller coaster. I can't predict what my reactions or emotional state will be each day. I am going to try to enjoy myself as much as I can. I've got some good things to look forward to and I may just plan some additional fun events, just because I can.

Thank you to all who stepped forward to offer support today. It really means a lot to me. With you, I can get through this - as crappy as it may be.

One day at a time and die cancer die.

Tuesday, May 24, 2011

Optimism fallacy

I read an article in More magazine on the weekend about the fallacy of positive thinking when it comes to cancer. There's a myriad of self-help books on the topic touting the immune-boosting effects of positivity and our culture has come to believe our emotional state is critical to our ability to fight disease, especially cancer.

"While the idea of "fighting" cancer is deeply rooted in our culture, there is no link between emotionall well-being and actual survival," says Cheryl Hawkes in her article The answer to cancer in the October 2010 issue. She goes on to say studies that tout the benefits of having a positive attitude are more likely to get published than those that say it has no effect. So that's why we've all be led to believe that positive thinking is the key to beating cancer.

While most of the time, I do believe a positive attitude can affect prognosis, today, I'm thankful this study pooh-poohs a good attitude because I'm pissed, sad and shocked. I went for my check up today and discovered, despite how awesome I feel, that my CA-125 is on the rise. This chemical marker to determine the presence of cancer steadily increased over my last two appointments.

I was absolutely certain I was in the clear. I went into the appointment today with the attitude I didn't need luck because I was more than fine. The CT scan six weeks ago showed the cancer shrinking and responding well to the chemo and Olaparib one-two punch. Yet at that same appointment, my CA-125 jumped from the 40s to 109. Ack.

When I found out about the jump during my appointment this morning, I tried to convince myself it was just a blip (although, to be honest, I was freaking out in the back of mind). Dr. H called himself this afternoon once he got today's CA-125 number of 250. Note: When the doctor calls himself, it's NOT good news.

This stupid disease is seriously out to get me. While I'm not ready to raise the white flag to it, I cringe at the thought of more chemo and treatment.

Although I tried to get Dr. H to talk about what would happen if I had two high CA-125 results in a row during my appointment - and before we knew it is indeed rising rapidly - he said we'd cross that bridge when we come to it. Damn it, we've crossed that stupid bridge now, haven't we?

So next steps are a CT scan and CA-125 during my next appointment on June 28. Yes, I have to wait five weeks with this worry and dread filling my heart before I know. He assured me we have "lots of options." What options?! What can I do? What will keep me alive? Crap. I feel so friggin' desperate.

During the phone call, Dr. H said he'd start gathering information about these many options to discuss at the next appointment. Regardless, none of them are going to be as good as enjoying the summer, living a normal life, working on projects that mean something and forgetting about cancer. Today I even optimistically told him there are days when I don't even think about cancer. Sigh, I guess those days are gone again.

I am absolutely horrifically despondant about this news.

To top it off, I feel I've let everyone down. Here I was supposed to be fine, supposed to be the Olaparib girl, supposed to stop putting everyone else through the worry and trauma of cancer, if even for a few months and yet, it looks like it's coming back. I know guilt is a useless emotion, but my good Catholic upbringing means I have it in spades.

Yet, I said to Michael tonight, I also feel I have no control. Regardless of what I do, the good attitude I have, the drugs I take, the good food I eat, the exercise regime I've established, this stupid disease is stronger, faster and more determined.

Then I say, "Why me? Haven't we been through enough?"

I hate throwing a wet blanket over everything with my bad news, especially for Michael's sister, who gets married in 2-1/2 weeks. I even contemplated keeping the news to myself, but that's not fair either. Nothing about this is fair.

I may need some shoulders to cry on or some steadfast people to keep me going over the waiting period (and beyond), I hope I can count on some of you.

Your angry, sad and shocked friend,
a.k.a. NOT the Olaparib poster girl

Check up

It's off to Hamilton this morning for my six-week check up. It's a beautiful morning and the drive should be pleasant. Best of all, I get to spend the time with my sister.

Today the vampires (oops, nurses) will draw blood for the usual plethora of tests. Then it's off to see Dr. H and C to talk about how I've been feeling. Luckily, I can say I feel pretty darn good despite some cold symptoms that started yesterday (bad germs I probably picked up at work).

I will tell them about some abdominal tenderness and weird pains I've felt a time or two under my breasts (a different side each time), but I suspect they'll consider these minor aches inconsequential and send me on my way. At least, that's what I'm hoping.

Last year at this time, I had a CT scan, which confirmed the cancer was back. Luckily, I have no fears of that right now (although, one can never be entirely sure). My next CT scan is in six weeks and I'll look forward to hearing the all clear.

As for today, I'm looking forward to getting the A-ok so I can continue to enjoy life.


Friday, May 20, 2011

Sweet sixteen

Sixteen years.

At 16 years old, an individual can drive a car, hold a job and is usually in grade 10. He or she has gone from a dependent, helpless infant to a person verging on adulthood.

When you think about 16 years in that context, it's a long time. But to me, today, it's not. May 20 marks the 16th anniversary of day I married the love of my life.

In some ways, it feels as though we've been together forever. It's hard to recall the time before Michael. But then again, I want another 16, 20, 30 years with him.

Little did we know when we repeated the words, "in sickness and in health" what awaited us. But life never works out exactly as we plan when we're young and idealistic (or even older and a little jaded). The strength of the marriage can be judged on how the couple navigates the bumps in the road - and we've encountered a few big ones.

Don't get me wrong, like any couple, we don't always see eye to eye. But I wouldn't trade my life with Michael for the world. And I hope and pray that despite the sickness we've encountered, we have many more years to celebrate our marriage.

Happy anniversary, my love.


Thursday, May 19, 2011

Another step on the journey

I'm one step closer to better health.

I saw my plastic surgeon Tuesday and signed the paperwork for a prophylactic double mastectomy and breast reconstruction. I'm going for the-one step procedure where the breast specialist (Dr. B) removes all the breast tissue and the plastic surgeon (Dr. T) then comes in to pretty the area up again.

After the breast tissue is removed Dr. T will insert implants, cover them with my skin and then fill them as much as she can with saline. She'll leave a port in my chest, through which she'll continue to add saline every two weeks until the breasts are the size I want. Then I'll have a quick surgery to remove the port and add nipples (if I decide I want them).

You could compare the whole procedure to a giant, wild party. After a night of debauchery, the clean up crew moves in to fix up the damage. Nothing will ever be the same again - the smashed lamp, the red wine stain on the carpet, the chip out of the coffee table - but the new living room looks respectable nonetheless. The party is quick and somewhat destructive, while the clean up takes spit, polish and time. And it's not the same - never the same - but quite acceptable.

Of course, there are risks to the procedure. If the skin that's stretched over the implants dies, I'll need another surgery. If the implant deflates over time, I'll need another surgery. There's also the risk of infection. Dr. T said because I'm choosing saline implants, I may notice some wrinkles in the skin or feel/hear the sloshing of the salt water when I move. That may be disconcerting, but it's certainly not dangerous.

Then there's the usual risks of anaesthesia, the pain and the recovery time. But I'd rather go through surgery and reconstruction as opposed to surgery, reconstruction AND treatment for breast cancer. The almost 50 per cent risk I have of contracting the disease is way too high.

I'm resolute in my decision to have the surgery, but I have to admit, I'm nervous. I'm sure that feeling will only grow as I approach November; the month in which I've asked to have the surgery. But, it's the right thing for me (and my mom who will undergo the procedure at the same time). I have to do what's right for my life - and I think this procedure will save it.


Sunday, May 15, 2011

Warm my heart

It was cold AND wet, but Team Tina rocked the Run for Ovarian Cancer this morning. We were the top fundraising team, raising over $7,000 (and London Life generously matches $6,000 of that) for ovarian cancer research.

About 25 friends and family donned their yellow shirts and ran, walked and cheered the 5 km and 1 km routes. The rain was light when we started the run, but it was really pouring by the time Michael and I finished. Between the rain and my sweat (yup, I sweated even though it was cold), I was soaked by the time we crossed the finish line.

I have to admit, the run was really hard for me. I ran and walked - and was in the last third of the runners of the 5 k - but I did it. I have to admit, I ran more than last year, so that's an improvement. Jodi, who is nine months pregnant (her due date is today), joined me for the last few metres of the run. So we crossed the finish line together. I think she was just trying to convince the baby to come out!

Despite the cold and the rain, all those who came out in the awful weather to run with me and all those who donated to ovarian cancer research warms my heart. I am extremely thankful to everyone for all their support. And a big thank you to my dad who came out an participated in the rain, even though it is his birthday.

Tonight I rest my sore legs and feet with a smile on my face because I am a lucky woman. I'm loved by an amazing group of people.

Thank you!

Tuesday, May 10, 2011

Stellar survivor support

Last night I had dinner with some of the members of my cancer survivor group. We met during a workshop through Wellspring last spring, and now we get together every couple of months to catch up and share a few laughs over dinner.

They're a great group, who understand the effects - both physical and psychological - of dealing with a cancer diagnosis. While our conversations don't centre around the disease, it's not uncomfortable to bring it up with this group. We share news about recent tests and discuss side effects we're still experiencing. They're very curious about my clinical trial and how I'm doing with this new drug.

With these wonderful individuals, the word cancer and all it entails doesn't stop conversation or cause discomfort, as it does with some folks. It's easier for those who've never had cancer to forget about it, and I don't blame them because that's what I'd do if it wasn't such an integral part of my life. But for those of us who've battle the demon, its presence never stays buried in our minds for long.

I hadn't seen one of the women from the group in about four months, and she kept telling me how great I look and how the sparkle has returned to my eyes. While I know I've changed from my chemo days, I don't see the small incremental improvements every day. It was such an ego boost to hear her exclamations, which I needed.

We talked about one survivor's training for the dragon boat races and the exciting new job of another. We talked of upcoming appointments and recipe ideas. Best of all, we shared commraderie, a great meal and hugs.

I'm truly lucky to have met these wonderfully supportive people. Maybe at the next gathering, we'll be able to share on a patio in the sunshine.


Monday, May 9, 2011

Dratted responsibility

A few years ago, I completed a strength-finder questionnaire at work. My job and performance appraisals before this point, highlighted what I did well, but then targetted areas for improvement, or my weaknesses. The theory behind the exercise (and accompanying book) is leaders should identify a person's strengths and give them tasks based on those strengths - because they'll do them well and, as a result, like them more.

One of my key strengths is responsibility. The book, entitled Now, Discover Your Strenths, defines responsibility as:

Your Responsibility theme forces you to take psychological ownership for anything you commit to, and whether large or small, you feel emotionally bound to follow it through to completion. Your good name depends on it. If for some reason you cannot deliver, you automatically start to look for ways to make it up to the other person. Apologies are not enough. Excuses and rationalizations are totally unacceptable.

This character trait explains why I've been waking up in the night and fretting during the day. I feel it's my responsibility to ensure Team Tina's fundraising efforts for the Run for Ovarian Cancer are successful. I feel a tightening in my gut when I realize we're not close to the $6,000 mark (the threshold to which London Life will match donations).

I wonder why we don't have as many participants this year (I know everyone is busy and there are lots of great causes out there). I feel compelled to ask more people for donations and be pushy in a way that is uncomfortable for me. As a result, my responsibility and empathy traits (sensing the emotions of those around me) are in conflict, which doesn't feel good either.

Of course, it doesn't help the team bears my name.

I try to tell myself I can't take on the fundraising efforts of Team Tina, let alone the run as a whole. I'm doing the best I can, which should be good enough, but for some reason I still feel bad.

Then there's the responsibility of being able to run the 5 km. My running efforts are slow and my enthusiasm is waning. Again, I'll just have to do the best I can.

So I'll probably mutter under my breath this week, "You are only one person. You're not responsible for the success of failure of your team nor the run. Do your best and enjoy the day." If you hear me, just ignore my attempts at rationalization (which of course, as stated in the definition, won't be good enough for my psyche).

I know I sound a bit irrational. I understand that, but it doesn't tamp down that natural feeling of responsibility. It's who I am.

Your responsible friend,

Tuesday, May 3, 2011

Golden rejeuvenation

I'm sitting on a balcony in the warm sunshine, listening to the waves rhythmically lap the shore and the seagulls shrill call of "food, food, food." I'm in Myrtle Beach, where the weather is warm and the days are relaxing. Angie and I are enjoying our second-annual sisters' trip to South Carolina.

There's something rejeuvenating about the sun, blue skies and endless stretch of water. Of course, there's something to be said about having no schedules. We eat when we're hungry, sleep when tired and rise when our bodies wake us. We walk along the beach, read books, lounge by the pool and shop. We have no one to answer to but ourselves. No lunches to pack, no meals to make, no meetings to attend and no demands. It's the perfect getaway to recharge my batteries.

We came to Myrtle Beach last year and, while we loved it for its low-key atmosphere, I onsidered trying somewhere else this year. But after researching the prices of different locales, we decided to come back here because we just couldn't beat the price. A direct flight from Detroit and four nights at our hotel - which is basic, but nice - was only $303 a person!

It's a perfect little getaway. Although I have to admit, this sneak peak into what my curly hair will look like when I'm at the beach, pool or even blown by open car windows is not an encouraging one. While I can tame the fluffly curls with product after I shower, the elements and activities turn me into a fluffy-headed troll doll. Or I look like I belong to the curl-and-comb-out set from the local seniors' centre. It's not a good look and I'll have to figure something out. Worse case scenario, it may be another do-rag and hat summer for me. I will not forego my favourite activities because I'm worried about my hair. That's so not me. I love summer!

Gotta go. There's some sunshine to enjoy.