Happy New Year

It’s a new year and I’m getting accustomed to the idea… that it will be my last.

It’s been a tumultuous last couple of months. I lost another friend to this horrid disease. Shelagh’s demise was slow and hard to witness. I relish our last hour together after she was admitted to hospice. We looked out over Burrard Inlet at the North Shore mountains and we laughed and cried. And talked about the fun we’d had sharing coffee, stories and disease.

And then I went into hospital for a few days for a lingering bowel obstruction that only rest and several days of starvation (no food or water or ice chips) resolved. No NG tube. No surgery. Finally lost 10 pounds.

Now I’m on not just a low fibre diet (which I’ve eaten for the last year) but a very low fibre diet. White bread. White rice. Protein is fine but I’ll never be a vegetarian again. A limited number of fruits and vegetables. Small meals.

This fall’s chemo did some good work. Tumours in my abdomen and liver got smaller. But there was a new one. It’s in my sacrum, a bone in my lower back. And bony metastasis are never good. They’re rare for ovarian cancer too. I read that only 1% of women with ovarian cancer develop metastasis in the bone.

My oncologist went back to the shelf to see what chemo might be left for me. There were three drugs I haven’t had before but two are very hard on the liver. And my liver is failing. My eyes have developed a yellow rhuemy look and sometimes my complexion too. My skin itched because the liver can’t process all the toxins. So that leaves me with the last chemo… Vinorelbine. I can’t believe I’m here already.

Vinorelbine was developed from the periwinkle plant. It sounds gentle. Unlike most other chemo drugs I’ve experienced over the last 5 1/2 years, this one is tiny. It arrives in a 35.5 ml package and takes just 6 minutes to administer. Compared to the 7 hours I spent receiving cisplatin and taxol on my first round, this is quick and fast. Will it work?

My goal is to be well enough to join my kids on a Caribbean cruise we’ve booked for reading week in February. After that? We will see.

 

Last Words for my Good Friend

I lost a friend. None of us knew it would go so fast. Even Mary Louise.

She had cancer — we all have cancer — and it had progressed — as cancer does.  Over three years it had grown, then was beaten back by toxic chemicals.  Mary Louise grew well again or at least she was better again. Although none of us is ever as good as we were before diagnosis.

Then her leg became enflamed — red, hot, swollen. Even the infectious disease specialist could not identify the ailment. He prescribed an antibiotic and when the redness grew up her calf, he doubled the dose.  And the next month, when the infection reached her thigh, he tripled the dose.

We we had high hopes for a clinical trial that all three of us were on but Mary Louise wasn’t getting any better.  She had a brief respite on yet another chemo therapy.

When she missed the chocolate cake and sunflowers our group arranged just before her birthday, I knew something was wrong. She so enjoyed a celebration.

She hadn’t eaten in days. She was sleeping all day. She was home alone. The infectious disease specialist had increased the antibiotics again but now her right ankle was red.

When I drove her to hospital the next morning, neither of us knew she’d never see her apartment again.

Looking back, it all went so quickly. Intravenous antibiotics. Fluids. Blood transfusion. A final CT scan. The talk with the oncologist. And then a couple of days for all of us to get used to the idea that Mary Louise was dying.

When I first met Mary Louise she was very angry. “My name is Mary Louise. Not Mary. Not Louise. It’s Mary Louise. And I don’t like answering questions, so don’t ask me.”

As Mary Louise began to trust our little group she realized our questions were about caring, concern and gathering information. Some of us thrive on learning more about the disease we share — how many permutations, how it attacks us differently. What new drugs are being tested and will we qualify and will it work?

Mary Louise learned to ask questions too and learned how much anger we shared. I miss her bold guffaws at our black humour. We were in a race that no one wanted to win.  Could we slow it down?

At the hospital, they told Mary Louise she would go to hospice soon. At first she was worried that she was too far from dying to go to hospice. No one lives much longer than a few months, they’d said.  Wouldn’t she live longer?

And what about home, she asked? “Can I go home again?” She wondered.  She needed care. A hospital bed. Drugs to ease her way. Oxygen.  She was reassured that hospice was the best place for her now.

She need not have worried.  Four days she lived in hospice and then she was gone.

 

 

 

The Real Face of Cancer

Johnny was a family friend who lived on a farm in Whonnock long ago, when the rural area was far from North Vancouver, accessible by narrow country roads. On Sunday, my dad’s day off, he often helped Johnny with concrete work and cutting down trees and planting new ones. There was always lots of laughter and many jokes between my dad and Johnny.

In the late afternoon Phyllis would call us for Sunday dinner served on china plates with blue patterns of willow trees. I had never seen plates like that before. At home our plates were plain-coloured melmac with a 1960s trim of orange and brown around the rim.

When we last saw Johnny he was in a four-bed ward of Vancouver General Hospital. I was too young to understand the significance of the last visit. I don’t even remember seeing Johnny but I remember my mother’s face when we left the darkness of the ward. Her face was drawn and she was upset. From his gaunt, skeletal face, she knew he was dying and no one had told her so. 

This is cancer’s last hurrah. No fundraising. No celebratory head shaving.

I’ve seen real cancer now.

A few months ago the four of us — ovarian cancer buddies — laughed over lunch. Some of it ghoulish humour.  We are all facing death — some of us sooner than the rest but none of us really knows when. My friend K has been expecting to die for years or so the doctors have said. But she is still active and lively and eager to try another clinical trial if it fits.

We do not look afraid at least not while we’re having lunch. My other friend, S, has just spent a month in hospital. At first we thought there was hope for recovery. But she’s had “the talk” we all fear. It’s when the oncologist says she is sorry but there is nothing more she can do. So S is home to enjoy her grandchildren and say goodbye to her family and friends.

M was admitted to hospital this week. And we don’t know how long or whether it’s for good. We will wait and see.

Only K and I can go for lunch now but she doesn’t eat much any more.

My view of cancer is clouded by my own relative good health. “You look good,” people say. And now I know what they mean because I have seen what cancer looks like when it takes a hold of you and says no more Walks of Hope and no more Cancer Dances. Now it’s Snow White’s pale complexion, unbearable fatigue, veins shrunk and lost within a flabby arm. Frustration at the loss of movement and self control. Fear of infection taking over.

The faint scent of urine leaks from the bathroom door left ajar by the last patient eager to empty his bladder after the CT scan. They leave the CT room wearing the short blue patient gown, strings tied haphazardly in front or back or on the side. Skinny legs and shoes below. Minutes later they emerge, dressed in jeans and a leather jacket — no more the patient, now the man. Or at least a patient disguised.

On the cancer hospital floor the patients are easy to spot even if they’re wearing sweat pants and t-shirts. They’re linked to the chemo pumps by thin plastic tubes and the needle in their arm. One man is doing laps around the floor.

Here cancer isn’t pink or teal ribbons. Or smiling faces like the bald runner on the poster for Back on Track Fitness. Here the bald heads are pale and sad, holding cardboard dishes on their laps in case vomiting resumes. Pain is a constant companion. With drugs to beat back the hurt. And drugs to stop the nausea. And drugs to keep the bowels moving. And drugs to sleep.

And we wonder, how long are we here for? And will we see our home again? And is this the end? And if it is the end, how much more must we endure?

Great News for Canadian Women with Advanced Ovarian Cancer

                                                                              Avastin has been available in the United States and the European Union as a combination treatment with chemotherapy for advanced ovarian cancer. For many women, Avastin has given them a longer life.

In Canada we’ve considered Avastin one of the “last hope” drugs as its significant cost has not been covered by BC Pharmacare or the BC Cancer Agency. While some of my ovarian cancer friends have managed to use Avastin as part of their treatment, they’ve had to pay for it themselves — up to $5,000 per treatment — and they need it every three weeks. Some friendly extended health plans have covered the cost, sometimes sharing the bill with Avastin’s manufacturer, Roche Canada. Now that Health Canada has approved the use of Avastin, the next step is to have the pan-Canadian Oncology Drug Review approve funding for the use of the drug.

About Avastin

Avastin (bevacizumab) is a recombinant humanized monoclonal antibody that selectively binds to and neutralizes the biologic activity of human vascular endothelial growth factor (VEGF).

An independent blood supply is critical for a tumour to grow beyond a certain size (2mm) and spread (metastasize) to other parts of the body. Tumours develop their own blood supply in a process called angiogenesis by releasing vascular endothelial growth factor (VEGF) — a key driver for tumour growth. Avastin is an antibody that precisely targets and inhibits VEGF.¹⁴

Avastin is also approved in both the United States and the European Union (EU) for recurrent platinum-resistant ovarian cancer and in the EU for recurrent platinum-sensitive ovarian cancer. It is also approved in Canada for metastatic colorectal cancer, locally advanced, metastatic or recurrent non-small cell lung cancer and malignant glioma (WHO grade IV) – glioblastoma (notice of compliance with conditions).¹⁵

This excerpt is from Roche Canada’s news release, issued this morning, “Biologic treatment option now available to Canadian women living with advanced ovarian cancer”

From Ovarian Cancer Canada: 

Recently Health Canada approved the use of Bevacizumab (AVASTIN) in combination with paclitaxel, topotecan or pegylated liposomal doxorubicin for the treatment of patients with platinum-resistant recurrent epithelial ovarian, fallopian tube or primary peritoneal cancer. We understand that the manufacturer of AVASTIN will now be applying to CADTH’s pan-Canadian Oncology Drug Review (pCODR) to approve funding for the use of Bevacizumab (AVASTIN) in combination with paclitaxel, topotecan or pegylated liposomal doxorubicin for the treatment of patients with platinum-resistant recurrent epithelial ovarian, fallopian tube or primary peritoneal cancer.

CADTH is an independent, not-for-profit organization responsible for providing Canada’s health care decision-makers with objective evidence to help make informed decisions about the optimal use of drugs and medical devices in our health care system.

The experience and opinions of people living with ovarian cancer and their caregivers are important considerations in the drug funding approval process. Ovarian Cancer Canada has prepared a survey to gather information from those affected by ovarian cancer and their caregivers so that your experiences can be included in pCODR’s decision-making process.

Those eligible to fill out the survey are those (and their caregivers) who have:

1) been diagnosed with epithelial ovarian, fallopian tube or primary peritoneal cancer and who have been treated with chemotherapy; OR

2) had a recurrence of ovarian cancer and have been treated with additional chemotherapy; OR

3) have taken AVASTIN as a treatment for their recurrent ovarian cancer.

Surveys:

1) for individuals living with ovarian cancer – https://www.surveymonkey.com/r/avastin2015

 

2) for caregivers living with ovarian cancer – https://www.surveymonkey.com/r/avastin2015cg

 

 

 

 

Joining the 44%: Surviving 5 Years with Ovarian Cancer

Walking for Us: Tammy and Rochelle, wearing  teal shirts as ovarian cancer survivors; and my good friend Lorie.

It’s my “cancer-versary” today and I’m proud and surprised to have made it this far. Five years ago I was diagnosed with advanced ovarian cancer. I wasn’t sure I was going to make it to Christmas. But it looks like I will see December again.

How did I do it? Was it the exercise twice a week? All those supplements? Was it the prayers, love and support of many friends? Or Therese’s candles lit in cathedrals all over Europe? Was it five different lines of chemo? Was it the PARP clinical trial? (No, definitely not that). Was it my naturopath and Vitamin C infusions?

I’m sure a sense of humour helps — especially black humour because sometimes you just have to laugh as we undergo these treatments to get rid of tumours. But first we have to endure baldness, blisters, swollen feet and hands or legs. We lose our balance and the ability to walk with elegance. Sores inhabit our mouths and make eating unpleasant. We’re all on this low fibre or “white” diet after years of worshiping steel-cut oats and kale smoothies. Now it’s white bread, white rice, not too much salad and peel that fruit. No nuts or grains or seeds.

And there’s no promises that the chemo will work. Or that it will work for awhile until you’re back looking for the next weed-killer on the shelf.

No one knows the magic combination to survive ovarian cancer. Good health probably helps. As my family doctor says: “Other than the big thing, you’re really very healthy.”

Until recently, only 30% of women diagnosed with ovarian cancer were still alive after five years. That’s a quick trip through the world of ovarian cancer. New data shows more women are surviving longer — 44.6%.

SEER Cancer Statistics Factsheets: Ovary Cancer. National Cancer Institute. Bethesda, MD

 

 

 

 

I’ve had good news since I left the PARP inhibitor trial (ARIEL2). After two Taxol (paclitaxel) treatments, my CA 125 has dropped again — from 1,700 to 74. (Normal is 32 and under.) So incredible that my oncologist called me at home to tell me the news. And how am I feeling? Energetic. Back to exercise class. Swimming laps. Looking forward to a trip to the heat of Phoenix and later this fall, to Maui.

I’ve come a long way from surgery five years ago when I was wheeled into recovery shouting, “Thank God for BC Hydro!”. It wasn’t electrical power I was concerned about — it was my kids who I was solely responsible for. I worked for BC Hydro and its excellent health benefits and long term disability also supported my survival.

I joined other survivors on Sunday for The Walk of Hope after our Team Dwyer raised more than $11,700 from supporters far and wide. The national total raised is already more than $2 million. What is it for?

• Support for women and families living with the disease
• Awareness and education
• Research funding

Because it’s only through more research will we learn how to more survivors can live longer. In the meantime, creating awareness of the vague symptoms of this disease will encourage earlier diagnosis, treatment and survival.

Okay, enough of the serious stuff… I’m off to celebrate my cancer-versary and to enjoy my life, as long as I can. Until next time.

Team Dwyer, named for Shelagh Dwyer, my good friend and support buddy. Wishing her all the best as she battles health issues in hospital.