Bald Woman Tries Saving Four Women from Dying Today

 

thumb_IMG_1870_1024Bald woman? That’s me. Bald for the last month or so after Taxol treatment.

And those 4 women? That’s how many women ovarian cancer kills every day in Canada. I won’t be one of them this year, thanks to research which developed Taxol as an effective chemotherapy for many women. But that was back in the 1950’s. There’s a lot more to discover about this most fatal women’s cancer and that’s what the Walk of Hope is all about.

This family-friendly event raises vital funds to provide support, raise awareness and fund much-needed research into prevention, improved treatments and ultimately, a cure. Join me in the Walk of Hope on Sunday, September 13 in Vancouver.

Thank you to the many people who contributed more than $2,000 to the Walk of Hope campaign through me. Every donation from $10 to $250 has helped our Team Dwyer, named for my friend Shelagh, to raise a total of $8,960. We’d like to hit $10,000 before Sunday’s walk.

If you can, please contribute. It’s easy — just cllck on the link below my name at the end of this post. Look for the DONATE NOW button on the upper right of the page.

Thank you for your interest and for learning about ovarian cancer during Ovarian Cancer Awareness Month.

For more information about where donations go, please visit http://ovariancancerwalkofhope.ca/…/what-your-money-supports

For more information about ovarian cancer, please visit http://www.ovariancanada.org/

Thanks and regards,

Rochelle van Halm
http://noca.convio.net/site/TR…

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Posted in Fundraising, Living with Cancer | Tagged , , , | 4 Comments

CA 125 Drops 6,100 Points After First Taxol

I remember the days when I was excited about my CA 125 dropping six points, never mind 6,000. But after chemo four-and-half years ago, the tumour marker was in single digits. Anything lower than 32 is considered normal. So the closer we get to zero means remission, health, life.

My new favourite tree: the Pacific Yew. Taxol was originally derived from Taxus brevifolia (the Pacific Yew) foliage and fruit. As the tree was already becoming scarce when its chemotherapeutic potential was realized in the late '50s, the Pacific yew was never commercially harvested from its habitat at a large scale; the widespread use of the paclitaxel (taxol) was enabled when a semi-synthetic pathway was developed from extracts of cultivated yews of other species.

My new favourite tree: the Pacific Yew. Taxol was originally derived from Taxus brevifolia (the Pacific Yew) foliage and fruit.
As the tree was already becoming scarce when its chemotherapeutic potential was realized in the late ’50s, the Pacific yew was never commercially harvested from its habitat at a large scale; the widespread use of the paclitaxel (taxol) was enabled when a semi-synthetic pathway was developed from extracts of cultivated yews of other species.

In a ghoulish way, I’m sort of fascinated by these numbers — how different they are for different women, how they change with such speed as our disease advances. Do we trust that they still indicate disease if they once did? I don’t have answers (and neither do my doctors!)

After three months of Cisplatin and Gemcitabine last summer, my CA 125 was 45. We knew it wasn’t working. I took a break until the fall to heal from the chemo. In September, CA 125 jumped to 246, a month later, 459, two weeks later, 820. Double double double trouble.

I started Doxil (Caelyx) two weeks later. I’d heard that it often takes several treatments to see the CA 125 drop on Doxil (Caelyx) but a month later I was surprised to see 760. Another Doxil (Caelyx), another reduction to 270! After Doxil #5 (Caelyx)… the party was over. CA 125 climbed to 480. I did Doxil #6 (Caelyx) with a heavy heart… I knew I had used up yet another chemo and the CA 125 confirmed it: 1,200.

I was in a holding pattern this spring waiting for the ARIEL2 trial using Rucaparib (one of the PARP inhibitors) and donated a lot of blood at the lab in preparation. Two weeks after my last CA 125, it was 2,000. Another two weeks, it was 3,300. I started the trial at the end of April 2015 with high hopes that the new drug would make me well.

After the first month on the trial, the CA 125 rose to 7,200! After the second month, 9,100. After the third month, I was out of the trial — just not doing it for me as fatigue and pain increased. Ironically, my CA 125 finally dropped to 7,800.

Two days later I started Taxol (Paclitaxel) and ten days later, lost my hair. Three weeks later I had blood work done in preparation for Taxol #2 (yesterday). Could it be? CA 125 was 1,700!

Now I agree if you think that’s still a pretty big number but I’ve been in the 4 digits since April this year. Who knows what Taxol #2 will bring?

I’m approaching 5 years with ovarian cancer since diagnosis in September. I’ve endured 5 chemos and the Rucaparib trial. A little more time… that’s all I ask. And now on my Dexamethasone night (a steroid given before the Taxol to knock out nausea), I see it’s nearly 4:30 a.m. I should try and get a little sleep. Later today I will celebrate my daughter’s 23rd birthday — this is what I live for now.

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So Much for Super Heroes: Moving On After a Clinical Trial

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Happy days sailing on English Bay with my sister and our dad.

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Summer weekends on Rompslomp at Centre Bay, Gambier Island.

Twenty-six years ago I was a brand new mother with an infant son. New life entered the world as my parents received a stunning diagnosis: my strong, tall, lean, sailor father had cancer. Only two months before that phone call he had climbed to the top of the mast in a bosun’s chair to untangle halyards. As usual, he did what men half his age wouldn’t do.

He was hospitalized that fall as we tried to understand why he wasn’t getting better. I was visiting with baby on my lap. “Would you like to hold your grandson?” I asked.  He said no and until now, I didn’t really understand why. “Wait until I’m better,” said my dad. “I’ll hold him then.”

But my dad didn’t get any better and by the time Baxter was six months old, my dad was gone.

I understand now. I’m feeling that way now about writing this story. I feel like waiting until I’m better to write a healthier, happier story. My dad never held his grandson but I’ll carry on.

I’m off the clinical trial

I was pretty positive I’d have some good life on that trial (Ariel2 with Rucaparib) when I started at the end of April 2015. It was surprisingly tough going and a rotten drug to be on during Vancouver’s incredible summer. Sunscreen with SPF60, long sleeves, hat, and a tree for shade were not enough to prevent my hands from burning and blistering. My internal temperature skyrocketed and I perspired as if I was shopping in a Thai market wearing a parka. The fatigue was worse than ever. There was the usual slight nausea that drugs took care of and a new metallic taste in my mouth.

After the first month on this new super drug, I was excited to see what it did to my CA 125. Alas, it jumped from 3,300 before the trial started to… 7,200 in a month. The doctors did not seem surprised. “It sometimes takes a while to see a reduction in the tumour marker,” they said. The phenomenal fatigue continued and the second month, the CA 125 jumped again to 9,100.

By the third month I was on a reduced dose and the last week, I was off the drug completely to bring me back from the sleeping death of fatigue. “How do you feel now?” asked the oncologist. “Not much different,” I said. “Well if it had been the drug causing your fatigue, you would be feeling better by now,” he said. “I’m afraid it’s not the drug, it’s the cancer.”

Perhaps it was fortunate that I was seeing the senior oncologist instead of my usual doctor who is younger and reads CT scans a little more positively. “Stable disease,” she had said. Stable is good, I wrote, at this stage of the disease.

The senior oncologist read the same CT scan and saw my lungs were clear of tumours but my liver — shot with tumours, two so large they joined together. (Siamese Tumour?) “This drug is not doing it for you,” he said. So I’m off the trial and back on chemo.

Hair today, gone tomorrow

Two weeks ago I started Taxol, a drug I’ve had before, almost five years ago. I remember my hair started falling out on the tenth day after treatment. Was it going to be the same this time? Sure enough, on the tenth day I felt that prickle in my scalp as if pins were pressed into my hair follicles. I reached up and grabbed a handful and gently pulled… and there it came. My daughter obliged me once again by shaving my head.

The bald look takes some getting used to… even if it’s the third time with this hair style. I was shopping for groceries this week and stopped in the toiletry aisle. Instead of the usual stuff, I thought I’d get something nice smelling for a change. Coconut or fruity or flowery? But as I reached for the bottle, I suddenly realized a new shampoo could wait another day.

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When bald becomes beautiful. http://www.hennaheals.ca creates henna crowns for cancer patients who lose their hair.

Posted in Living with Cancer | Tagged , , , , , , | 13 Comments

Living with the New Normal

changes-comingIn the cancer world we’re fond of reminding ourselves about coping with the new normal.

The new normal is what makes our world so different from what it was pre-diagnosis. In my life before cancer, I would never need to rest on a bench on the seawall after walking for only 10 minutes. But now sitting on the bench is the best part of the walk.

I would never think “a good day” would include a visit to the lab for blood-work, a doctor’s appointment and a stop at the fruit store for cherries. That’s a productive day for me. Bookended by several rests and a nap, that makes my day bearable with my current fatigue. It’s my new normal.

This morning I heard the results of last week’s CT scan. Some tumours were bigger, some smaller, some had disappeared. Some new ones. Overall stable. I reminded myself that this is the new normal… last year I was still waiting for remission to reappear but now stable is good enough. It’s the new normal… the ever evolving normal.

It’s been two months now that I’ve been on the clinical trial using rucaparib. I’ve experienced fatigue that sometimes sends me back to bed for a nap after breakfast. Is this my new normal? Tomorrow I receive my next month of pills, a reduced dose in an effort to reduce the fatigue and give me more of my life again. Within a week, I’m told, I will have my energy back. A new normal again.

When I’m languishing in bed mid-afternoon, awakening from daytime dreams, I sometimes wonder where I am on this journey. Have I seen most of it in the nearly five years since I was diagnosed?  Only 30% of  women with ovarian cancer live to see five years or more. Is this enough of a life, these half days immersed in sleep?

Posted in ARIEL2 Clinical Trial, Living with Cancer | Tagged , , , , | 2 Comments

Going Back in Time: High School Reunion

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I went back in time this weekend… 40 years, to my high school reunion of the class of ’75.

argyleArgyle Secondary School has been renovated many times over the years since we left. There’s a new library, now called the Learning Centre. The drafting room has traded drafting tables for computers.

In one math class there are hightop tables where groups of three students work on the day’s problem. When the assignment is done, they snap a photo with their phones and send it to the teacher. No paper. Students now also make jewellery and blow glass in  metalwork class and there’s a well-equipped digital program that teaches students district-wide.

argyle gang

It was in the courtyard where the Argyle alumni whooped and cheered. Once known as the Smoking Pit, it appeared to have been one my classmates’ favourite places.  Of course no smoking on campus anymore.

There are new clubs now too: gay pride which would have helped a number of confused students in my day. And there is even a cancer awareness group that meets at lunchtime.

Some things don’t change: in the hallway where I used to walk to Mr. Nakamoto’s math class, my stomach turned in familiar dread.

math class

Later that night at the pub, I mistook a man I used to know from English class for his father. Other people don’t seem to change at all. I recognized one woman by the angle of her head as she listened to an old story — I could see her in Biology class with that same tilt, listening to Mr. Schoen. One old friend had flown in from Newfoundland and another from Ontario. Others lived in the same neighbourhood they had grown up in which allowed their children to also graduate from Argyle.

having funThere were happy stories of grandchildren, longtime marriages and career success. I was surprised to hear from four alumni who were forced to leave their jobs because of workplace injury or illness. And there were sad stories too of those who died either from illness or violence.

As a teen I remember reading notices of upcoming 40-year reunions and wondering why near 60-year-old people would consider socializing with people from a lifetime ago. Now I understand: near 60 isn’t so old anymore and the reunion — and the people — are much nicer than the high school I remember.

Posted in Memoirs | Tagged , | 7 Comments