Monday, August 31, 2009

The web, my blog and new friends

The world wide web (www) is an amazing place. It connects us to information, entertainment and individuals. I started this blog to stay in touch with my family and friends as I struggle through my cancer diagnosis and journey. Over the past few days, I've discovered how my writing and the thin filaments of the web can connect me to new friends.

These new friends understand the cancer journey or the burden of being BRCA positive. They, through their writing or comments on my blog, provide information about the cancer journey, help me understand what to expect or offer new ideas to consider.

A few weeks ago, a women from Edmonton started writing encouraging comments on my blog. She understood my sleepless nights and the fog the chemo can bring. I was amazed a stranger would be interested in my story. In return, I went on her blog to discover she's struggling with breast cancer. Her situation is quite different, but I could sympathize with many of her tribulations.

Her blog listed dozens of other cancer blogs. I randomly selected one to find a woman from the London area who is about one year ahead of me in the ovarian cancer battle. I immediately read her entire blog, grasping at information about what my future may hold. She mentioned some of the same doctors, oncology nurses and chemotherapy nurses who are currently part of my life. I could relate to many of her feelings and experiences.

It took me some time to reach out to this woman and post on her blog. I don't know if I was reluctant to make contact because I may learn information I'm scared to face. Perhaps I was secure in my own little cocoon, fighting my battle. But I'm realizing these other woman can be a source of strength and comfort.

So I posted a comment on her blog, telling her she's an inspiration to me and that I too hope to be in remission one day. As a result of this post, I got two new women reaching out through comments on my blog.

One, from the United Kingdom, finished treatment two years ago for ovarian and cervical cancer (at the same time!). She too fought this terrible disease and won - proof positive it can happen. She's living her life with enthusiasm and hope. That's a wonderful source of inspiration for me.

Then, I was contacted by a woman who has also tested positive for the BRCA gene. Her blog discusses her diagnosis and reaction to it. Although she doesn't have cancer (she's a previvor), because of the awful statistics that BRCA carriers will get breast cancer, she's decided to get a preventative double mastectomy and reconstructive surgery.

I've been mulling her words around in my head all weekend (yes, I read her entire blog too). Are my breasts ticking time bombs? I already have one cancer associated with the BRCA gene, do I want to face breast cancer too? What are the chances? I guess I'll get more information and the answers to these questions when I meet with the breast specialist, Dr. B., on Oct. 7.

But all this new information and experiences makes me pause to consider my situation. I also am blessed with the very relevant experiences of my cousin, who is also BRCA-1 positive. She been through the breast cancer fight and won (for over 20 years). She's had the double mastectomy and bilateral salpingo oopherectomy to remove her uterus, ovaries and tubes. She faced the monster and beat it.

It's overwhelming processing all this information and the life-changing decisions. I was tearfully angry last night I have to face this. Why on earth did my family get this awful gene? Why am I fighting cancer at age 42 (and why does anyone have to face this God-awful disease)? Why do I have to consider cutting off healthy (as of right now) breast tissue to potentially save my life? Am I not scarred and beaten enough?

The emotional roller coaster of this journey is full of ups and downs. I should be enjoying this week before chemotherapy on Friday - my LAST chemotherapy - but instead I'm full of conflicting emotions. Perhaps I'm afraid because it's my last chemo treatment and afterwards I'll be in the free fall state of "let's see if this worked." I know it sounds insane since I hate chemo and all the awful side-effects it brings, but perhaps I'm afraid to go without it because I'm scared the cancer will return.

But I have to remember I'm alive - and I will continue to fight - even if I am scared and angry right now.

Tina

Saturday, August 29, 2009

First sleepover

I am so tired today. My 8-year-old daughter experienced her very first friend sleepover last night. They talked and giggled until until the wee hours. In fact, I walked in on a countdown for 1:01 a.m. because they could make a wish at that time (the wonderful imagination of little girls).

But Tara's room is right beside ours. I heard all the giggling, talking, moving around and general noise. I fell asleep briefly around 10:30 p.m., but then woke and laid awake listening to the muffled shenanigans. I visited the room several times with requests they go to sleep. Finally, I told Tara this would be her last sleepover unless they actually slept. That seemed to do the trick.

The numerous visits to her room and the late hour when I finally fell asleep are manifesting themselves today. I'm tired. I've been tired all week and the lack of good sleep last night was the icing on the cake. I'm going to try to keep most of the grumpiness in check but I have a feeling some may slither out at inopportune times today.

Tara's sleepover brought back good memories for me though. I remember countless sleepovers with my friend, Val or my cousins, Margie and Monica. We'd talk, run around, play, cook ourselves breakfast and giggle. It was great fun sharing nights with them.

So I can't bregrudge Tara this magical childhood experience, but last night, I did wish their tiredness kicked in a couple of hours earlier.

I know my cancer journey makes me more tired and the interrupted sleep contributes to the exhaustion. But then again, maybe I'm just getting old. I have a feeling it'll be an early-to-bed night for a couple of people in our household tonight.

Your old and tired friend,
Tina

Friday, August 28, 2009

Discrimination and statistics

I was shocked and appalled. As I was doing my research for yesterday's blog, I came across a information about individuals experiencing discrimination from their employers and insurance companies for testing positive for the BRCA genes.

Call me naive, but I'd never even imagined that could happen. I know as one who experienced cancer, I don't qualify for some insurances, etc. But I didn't imagine an employer would try to get rid of an employee (for so-called other reasons) for something beyond an individual's control - and who could live and be a productive worker for a long, long time.

Luckily, I work for a pretty amazing company with unbelievably supportive people who have stood behind me every step of the way.

I was also reading some survivor statistics yesterday too - and you know how I detest statistics. They always seem to be so bad. (Yes, I know these poor survivor statistics seem to support the reason for the discrimination mentioned above. Yet, no one has any guarantees in life and to turf an employee because they could get sick and leave seems inhumane to me.)

The survivor statistics did reinforce I have to live for today. I can't get stuck in the rut of life and not enjoy it, waiting for tomorrow. None of us know when our time to go will come. No one knows how many tomorrows we actually have to live, laugh and love.

I plan to go into remission and then stay cancer free for years, but I'm not promised x number of days. Like anyone else, I could get run over by a bus while crossing the street. I don't want to say, "Oh, I wish I had . . ."

Live without boundaries, love without regret.

Tina

Thursday, August 27, 2009

BRCA-1 test results

Without any fanfare or "may I have the envelope please," Dr. A. announced the results of our BRCA-1 gene tests yesterday.

After 15 weeks of waiting, we weren't surprised to learn I carry the BRCA-1 gene and my mom, as a result, is a carrier and has it too. My sister tested negative, thank God. It's the Belgian strain of the gene from my mother's side of the family.

Now Dr. A. said there's no way to be 100 per cent sure, yadda, yadda, yadda. But since I have ovarian cancer at 42 (and almost kicked its butt), I'd already assumed my test result would be positive. So no big surprise for me or my mom.

Dr. A. got all technical again yesterday talking about genes, proteins, pre-cursor lesions, etc. I understood the general gist. My cancer is serous papillary carcinoma due to loss of DNA repair. In other words, the part of my DNA related to the BRCA-1 gene is damaged, so it didn't work properly to kill off the abnormal cancer cells.

BRCA-1 and BRCA-2 genes belong to a class of gene called tumour suppressors. When they're normal, they help prevent uncontrolled cell growth. Harmful BRCA-1 mutations increase a woman’s risk of developing breast, ovarian, cervical, uterine, pancreatic and colon cancer. In men, it increases the risk of breast, pancreatic, testicular and early-onset prostate cancer.

Dr. A said the current working theory is the BRCA-1 related ovarian cancer may originate in the fallopian tube rather than the ovary. It then loosens and implants elsewhere - in my case, in the fatty lining of my stomach called the omentum.

I asked if this working scenario affected my treatment and prognosis. He said, yes, explaining this type of cancer tends to respond very well to platin-types of chemotherapy (I'm on carboplatin - which apparently is potent and one of the reasons I feel so terrible). But if it works to kill those nasty cancer cells, I'm all for it.

The good news is the prognosis for BRCA-1 gene-related ovarian cancer is better than the typical ovarian cancer. Yippee! In addition, I may qualify for a clinical trial studying a means of replacing the damaged gene in the DNA to prevent cancer reoccurence called a PARP inhibitor. Apparently, the PARP inhibitors have few side effects. So now I need to talk to Dr. P. about getting me into the clinical trial.

I learned an interesting statistic from Dr. A yesterday. Apparently, only three per cent of those who develop breast cancer and 10 per cent of those with ovarian cancer carry the BRCA-1 or -2 gene.

According to some research I did on the National Cancer Institute's (www.cancer.gov/cancertopics/factsheet/risk/brca) website this morning, having the BRCA-1 gene increases the risk of contracting ovarian or breast cancer exponentially. The lifetime risk for a woman in the general population to develop breast cancer is 12 per cent, while those who inherit the harmful mutation have a 60 per cent risk (Dr. A. said 50 to 90 per cent). The risk is cut in half for women who undergo the bilateral salpingo-oopherectomy (removal of ovaries and fallopian tubes - which I had, and then some).

For ovarian cancer, women have a 1.4 per cent lifetime risk of contracting the disease, while for those with the BRCA-1 or BRCA-2 mutation, it increases to 15 to 40 per cent.

Since my mom is a carrier (but luckily hasn't developed cancer), she's going to discuss possible preventative measures she can take (bilateral salpino-oopherectomy, bi-lateral mastectomy, screening measures, etc.) with a gynaecologist and a breast specialist. I will also meet with the breast specialist to discuss my risks and options. The answer may be more/better screening or more drastic preventative measures.

Angie, even though she tested negative, will still meet with a gynaecologist and breast specialist so she can undergo the necessary screening. Like she said yesterday, she's lucky because she tested negative for the gene but still qualifies for the precautionary screening.

As for my kids, they'll need to be tested 10 years prior to any evidence of disease appearing in our family. So at 24 years old, they'll need to undergo the BRCA-1 screening. But with all the research, medical breakthroughs and technology, researchers may have discovered a cure or a better way to prevent the gene-related cancers from developing by the time they're ready for testing. I pray to God that's true.

So, in short, having this gene sucks. But the good news is it seems to respond well to treatment, we're now aware we have it so we can have the necessary screening to try to catch any evidence of disease and, best of all, lots of research is being conducted on this topic. So, the chances of discovering new and better ways of treating and preventing cancers caused by this gene mutation are good.

In the meantime, I'll keep fighting my cancer, try to get into the PARP inhibitor clinical trial and pray.

Tina

Wednesday, August 26, 2009

The feeling of fall

I know we didn't really have a summer, except for a week or so, but I can feel the encrouching presence of fall. The leaves started dropping from the weeping mulberry bush in my front yard and the impending single digit temperatures at the night confirm this suspicion.

Of course, the kids head back to school within the next couple of weeks. I don't know if it's ingrained in me from my own childhood and my decades of returning to school in September, but the fall has always been a time of new beginning for me. A time to be more productive, start something new or refresh an attitude.

I think it's all those years of new school supplies. I had a sharp new pencil and an unmarked notebook, so the possibilities for success in the upcoming school year were endless.

I feel I've dedicated the past five months (with a sixth to come) of my life fighting cancer. During this time, I've learned a lot about myself and the disease, read numerous books, reconnected with people and expanded my writing through this blog. While I haven't felt very productive, it hasn't been time wasted.

When I've recovered from my last chemotherapy session, I can concentrate on moving forward. But because the kids are heading back to school and I'm tired of the cancer fight, I'm anxious to start now.

I'm ready to grasp the freshly-sharpened pencil and crack open that unmarked notebook, because the possibilities are endless.

Tina

Tuesday, August 25, 2009

Time

Dost thou love life? Then do not squander time, for that is the stuff life is made of. - Benjamin Franklin

Old Ben was a smart man (even if he erroneously ended that sentence in a preposition - argh!). Life is made up of seconds, minutes, hours, days, months and years, and it's up to each of us to make the time allotted important and meaningful.

That doesn't mean every day has to be filled with serious, important or life-changing activities. Life isn't like that or we'd all be exhausted. Some days will bring tedious work, ugly weather, disagreements, sickness, sadness or frustration (but hopefully not all on the same day).

The essence of this quote, and what I've learned from cancer, is beauty and good exists in every day. I have to discover it and choose to make each day matter to me.

It can be as simple as hugging my family, enjoying coffee with a friend, relishing a job well done, sharing a laugh, relaxing in front of the TV, savouring the ripe fruit in a pie, appreciating the smell of Downy while doing laundry, crawling into crisp, clean sheets or watching the colour of the sky as it fades during twilight.

I look for joy every day. I try to shake off frustration and anger. I'm getting better at choosing activities I want to do as opposed to the ones I should do. I attempt to look for good in situations, instead of harping about what's wrong with them.

It's not always easy, but it brings me more happiness.

It's far more rewarding to experience contentment during that time we call life. Find something that makes you joyful today and make the time count.

Tina

Monday, August 24, 2009

Sleepless in East London

The crickets are chirping and the cool wind blows in the windows. It's the perfect night for sleeping, but I'm not. I know when the sun shines brightly in the sky tomorrow, I'll regret my body's wakefulness.

After lying in bed for over an hour, trying to go back to sleep, I'm up. I figured I may as well blog. Maybe it'll make me tired. Before I woke at 1:36 a.m., I had weird menagerie of dreams that flowed from a casino to writing on Michael's forehead with a Sharpie to grapefruit-sized hail that killed people in the Toronto area. Very strange.

I didn't take my lorazepam last night. Maybe that's the root of the problem with the dreams and the inability to go back to sleep. But I figured I was tired enough and could do without the drug. Truthfully, I was hoping to be able to do without it. Sigh.

It was a crazy weekend with birthday celebrations and Tara had fun (the most important goal). Unfortunately, the past few days also involved lingering chemotherapy side effects. As I wrote on Thursday, I was feeling better and hoped I was improving. But I went back downhill on Friday and Saturday, suffering bone pain, burning sensations, heartburn and general discomfort.

Yesterday was much better. Athough I'm nervous because I still have a spot on the back of my right hand with no feeling. I'm afraid I've developed peripheral neuropathy. Chemotherapy is designed to destroy cancer cells, but it also damages or destroys other healthy cells in the body, including peripheral nerve cells. It can be temporary, but sometimes it can be permanent - and that scares me.

I've suffered most of the side effects of:

- Tingling
- Burning
- Weakness or numbness in the hands and/or feet
- Pain when walking
- Weak, sore, tired or achy muscles
- Loss of balance
- Clumsiness
- Difficulty picking up objects and buttoning clothing
- Shaking or trembling
- Walking problems
- Jaw pain
- Hearing loss
- Stomach pain
- Constipation

The website I referenced recommended telling my doctor, so I'll be calling the cancer clinic this week to let my chemo nurse know. I'm not sure if Dr. P. will change my chemotherapy dosage at this point, but it's good to let him know what's happening.

As I sit here and type at 3:30 in the morning, I feel worn down in many different ways. I'm praying for a better week with fewer physical symptoms, a better relationship with Michael and my kids, and improved mental health. I'm cautiously hopeful.

But I'll have a better chance of success if I get some sleep, so back to bed I go.

Goodnight/good morning.
Tina