Jane's Story

This was written by my sister Jane, about her recent experience with cancer.

This blog of Steve's and his fundraising ride mean a lot to me. I'm Steve's youngest sister (that's me, next to Mom in the above photo), and in September 2008 I was diagnosed with breast cancer - I was 52. My regular mammogram had picked up an 'irregularity' - probably nothing - and would I come in for another one, just to make sure. A week later and I'm sitting in the surgeon's office with my husband listening to the diagnosis - DCIS (ductal carcinoma in situ). You know how they talk about that punched in the gut feeling?

So here's the bad news / good news bit. The bad news - I've got breast cancer. The good news - this is New Zealand, where we've got publicly funded health care and I've drawn a great surgeon. I like Erica straight away - she has great  shoes, and she's an onco-plastic surgeon specializing in breast conservation techniques.

More bad news / good news - although the DCIS is over quite a big area, I've got such a big bust I can have a partial mastectomy combined with a bilateral reduction or 'boob job' rather than the old style radical mastectomy followed by reconstruction. We agree that this is by far the best option. And then comes the really hard thing - telling my family.



The next few weeks are pretty blurry.

I meet with Erica again to have all the processes explained. I meet with another plastic surgeon who will do the surgery along with Erica. Here too I am really fortunate - Dr.C trained here in NZ, then did clinical fellowships at Toronto General Hospital and  Memorial Sloan-Kettering Cancer Centre  in New York. My surgery gets scheduled then relocated, then rescheduled then relocated and rescheduled again - this sucks, big time. Thank god for sleeping pills.

Finally D-day is just around the corner - November 11th. The day before I have some radioactive dye injected into the breast so they can track and trace my sentinel node - this will be removed and biopsied during surgery to determine whether the cancer has progressed beyond the breast tissue. The day of surgery I have a 'hook wire procedure' -  tiny wires are inserted either side of the DCIS to mark it clearly for the surgeon. And then some more waiting - getting two surgeons from opposite sides of Auckland to the hospital in a third location is an exercise in logistics - lucky for me there's a nurse with a sedative.

And then it's all over - I'm awake - sort of, and John's there and Joe and Ems and Ethan, and there's a nurse with morphine.



Two weeks later (336 hours / 20,160 minutes ), we meet with Erica for the pathology report - there's more bad news / good news. They have found a few spots of invasive cancer outside of the DCIS - but they are tiny, the biggest one is only 2.5 mm (about the size of a headphone jack - less than 1/10th of an inch) and the sentinel node biopsy is clear. 'Just in time' Erica tells me. Now it's the turn of the oncologist.

I'm beginning to sound like a medical groupie here, but I can't say enough about the team of people who I've met in the last 18 months. Dr M (the oncologist) is great - he draws diagrams, explains how my type of cancer works and how different chemo treatments might affect the outcome. He also tells us that the choice of treatments is completely up to us. They've identified the invasive cancer as Stage 1 Grade 3 - and it is positive for the hormone receptors Estrogen and Progesterone and for Herceptin as well. With everything considered, Dr M recommends radiation treatment followed by Tamoxifen for two years, then aromatase inhibitors for another 3 years. We go away to think about it, but I don't think either John or I ever doubted that this was the option we were going to choose.

In my case, radiation treatment is pretty straightforward and easy to handle. I get tattoos! Three little blue dots for the GPS system on the radiation machine. The thing that I find most difficult about the treatment is driving into Auckland every day and trying to find a place to park at the hospital. Good news - halfway through the 20 treatments, my sister Wendy arrives, and she drives in with me every day.



And then the treatments are all over, the surgery has healed really well, and I'm free - sort of. I take the little green pill every night, and I get on with things. Life carries on as it does, and some days I don't even think about the cancer.

There's lots of talk in the Breast Cancer world about cancer being a journey (read Barbara Ehrenreich's great article 'Welcome to Cancerland'), and I know people who say that it's been a blessing in their lives. Not for me. I  haven't had any great spiritual insights and I haven't drastically altered the way I live, I'm not living in the moment any more than I did before, even though I try. I know that I've had a lot of luck since the diagnosis - early detection, great specialists, government provided health care, and wonderful wonderful (to the power of 10) family and friends who helped every step of the way - but I'm still pissed off that I got cancer.



Pissed off , but not too surprised - here in NZ there are 18,500 new registrations of cancer each year and over a lifetime one in three New Zealanders will have some experience of cancer, either personally or through a relative or friend. One in eight women will be diagnosed with breast cancer during their lifetime. I'll bet the numbers are just as scary where you live. It really does make you want to do something - help out somehow.

Here's something you can do - make a donation to the Ride to Conquer Cancer - do it for someone you love.

That's a photo of Jane taken in March of this year. Fifty-four and still going strong.

Thank you Jane.

Training Report #1

We’ll start at the beginning of April because it seems like a logical place to start. There are eleven weeks from the beginning of April to the day of the ride, June 19. In that time, I have to get myself fit enough to ride from Vancouver to Seattle, two back-to-back days of 130 kilometers per day (about 81 miles, for those of you still on the Imperial system).

Working from the training guidelines provided by the wizards at The Ride to Conquer Cancer website (link), I’ve set up a training schedule that should put me in good shape to complete The Ride without crashing & burning.

Here's how I'm doing so far:



So far, so good.



Not bad! That long ride? The 72 km? From North Burnaby to Pitt Meadows, in the rain. Cold & wet.

Here's the route we took: April 17

That map is courtesy of Cyclemeter 2.0, a nifty little iPhone app. If you ride, run, or ski, check it out. It's not 100% accurate - on one ride last week it recorded a maximum speed of 103 km/h. Not bloody likely.

Mom - 6 November 1920 to 29 July 1982

This is something I wrote when my Mom was sick. I never finished it, so it ends before it should, but so did she.

I am getting ready for my mother’s funeral. She’s not dead yet, but she is dying. A year and a half ago she went to her doctor about a pain in her back; x-rays showed a small lesion on her spine, tests showed it to be cancerous. The doctors discovered a small malignant tumour in her breast. It had metastasized and produced the lesion on her spine. Other lesions developed, on her legs, her hips. The doctors decided not to operate on the tumour in her breast, but to treat it and the lesions with radiation and chemotherapy. She spent several weeks in the hospital undergoing more tests, and then returned home.

She now needed a cane to get around - the radiation treatment on her legs had left the muscles weak and sore, her bones ached. The chemotherapy made her hair fall out, and she bought herself a grey wig that matched the colour of her hair but which was too obviously a wig. Later on she bought another wig that looked more natural; I sometimes forgot that it was a wig at all.

She insisted on maintaining her independence - stairs were hard for her, and she would accept an arm when going up or down, but on level ground she would manage by herself, moving slowly across a room or down a hall, cane in hand, legs moving stiffly beneath her, a small tight smile on her face.

Then one day she fell as she was making her bed and broke her leg. The bone had been weakened by the radiation and snapped like a dry twig. The doctors set her leg and put a huge steel pin in the bone. They said the pin would probably help eliminate the pain in her leg by taking the strain off the spot that had been irradiated; we were all cheered by this good news out of bad.

When she returned home from the hospital she was on crutches, just until her leg healed, she said; then she would go back to the cane, and eventually she would be able to get around on her own two feet, just like before. My father bought her a special chair, nicely padded with a back that curved around and firmly supported her. It was a curious colour - a shadow of green hidden behind silver-grey. It rocked and swiveled, and was quite comfortable.

She continued the chemotherapy. Every other week my father would drive her to the cancer clinic and sit with her while the chemicals dripped into her bloodstream. She dreaded the treatments, hating the needles and the sickness that came the day after. The doctors took x-rays and did bone scans and told her that the treatments seemed to be working - they could find no more lesions, things are looking up, they said, maybe we can stop the chemotherapy for a while.

All this time my mother was quite optimistic. She and my father made plans of what they would do when she got better - they would drive back east in the summer, stopping here and there to visit relatives and friends. They knew, they said, that it was better to get out and around and do things rather than to stay at home waiting for something to happen.

Whenever I asked her how she was feeling, she would say, not too bad, thanks, Stephen, and then talk about how she wished the swelling in her leg would go down, or how her hip ached. She always spoke very matter-of-factly, with no trace of self-pity; it was almost as though she was talking about someone else. Sometimes, though, the pain showed through. When she stood up, she would do so very slowly, lifting her weight with her arms until she could reach the crutches leaning in the corner behind her chair. She would then slowly straighten up, moving her body around the pain, careful to avoid putting weight on her legs. She concentrated all her energy on walking - her eyes would look inward, as though watching her damaged bone and tissue from within, her mouth set tightly, sometimes biting her lower lip. When she sat down, she would sigh, her eyes would clear, and she would be with us again. She had pills for the pain, and sometimes her voice would be thin and wispy, the drugs killing the pain also robbing her of her breath.

The last time I saw my mother before she got sick was at my brother’s wedding. The reception was held at a big old-time dance hall, where the band played all the old dance favourites - swing, polkas, tangos, foxtrots. It was a bottle club - you brought your bottle and bought your mixer. Some of the people had obviously been going there for years and years. Couples my parents’ age had all the steps down pat - their feet and bodies could follow the music without thinking. Penny and I had a few dances and felt like clumsy oafs next to the spinning regulars. Mostly we sat and drank and talked with other people in our party. At one point, my mother asked me to have a dance with her, and I begged off, saying something about being too tired. The next time I saw her she was in the hospital.

Several months passed. She didn’t seem to get any better or any worse. She spent most of her day in her chair, getting up only to eat or go to the bathroom. My father rented a wheelchair for excursions out of the house; he kept it folded up in the back of the car, and if they went out shopping she could ride around in relative comfort. He also bought a grab rail that bolted on to the side of the tub, and a bath stool that went in the tub.

Throughout all this, in spite of her shrinking world, my mother managed to maintain her optimism. She never talked of not getting better. She acknowledged minor setbacks - another lesion showed up on one of her hipbones that required radiation - but she did not let them get her down. She and my father made plans to fly down to New Zealand to see my sister, and they would talk about how long the flight was going to be, and how exhausted they would be when they arrived.

One day about a month ago I was talking to my mother on the phone, and she complained about a stiffness in her neck that was causing her some discomfort. She had had it for a couple of days, and she and my father decided to call the family doctor to come and have a look at it. She didn’t feel that it was anything serious and didn’t sound too worried. The next day I took my holidays, and when I got back to town a week later she was back in the hospital. The stiffness had turned out to be another lesion, this time in the bone of her skull behind her ear. I talked to her on the phone and could tell that she was quite drugged. Her voice was thin and dry, her words were slurred. I went up to the hospital to see her, and it was then that I realized that she was probably going to die soon.

She had been in the hospital for nearly a week. They had given her chemotherapy for the first three days, but it had made her so ill that they had stopped. They were also trying to adjust the dosage of morphine she would need to effectively kill the pain. When they gave her too much, she would be sick; not enough and she would hurt. I sat beside her bed and held her hand, and we talked. We talked about New Zealand, about the chemotherapy, the morphine, the wonderful whirlpool bath down the hall that they lowered her into. Her hand was warm and dry, the skin soft, almost without substance. Her voice often trailed off, leaving sentences half-spoken.

One day she asked me if I was afraid of death. I said that I didn’t know, hadn’t given it much thought. She said that she used to be afraid of it, but now it didn’t seem like such a terrible thing.

That’s as much as I wrote. She died on the 29th of July 1982, 61 years of age.

So when your Mom says, “Let’s dance” - dance!

Oops

Don’t let this happen to you.

If you have a Brooks saddle, don’t let the leather dry out so much that this happens:



Ten km into my ride this morning it just fell apart. It could have been very painful, but it was just really annoying. I turned around and very gingerly rode home on the back half.

Now I have a nice new Brooks saddle, thanks to ilan and his crew at Bikes on the Drive. He has my old saddle, which he’s going to hang on the wall as a warning to those who would neglect their maintenance.

As for me, I probably have a month or so of breaking in ahead of me - new saddle to old butt, old butt to new saddle. This will call for liberal applications of Proofide and maybe some extra padding in my shorts.

In the beginning...

Back in 1979, the movie Breaking Away was released, and it inspired a lot of people, me included, to get excited about cycling. About a small town working class kid hanging out with his buddies, obsessed with all things Italian (especially bikes), it was a heart-warmer - funny, predictable and a bit cornball at times, but it got me thinking about bikes, especially good bikes. Fancy bikes. Fancy Italian bikes.

At the time, I had a Nishiki 10 speed, a perfectly serviceable bike, dark blue, but I started hankering after something else, something more personal, more exotic, more...Italian.

I started visiting the local bikes shops, checking out tubing and gruppos, clusters and ratios, and of course, paint jobs. It wasn’t until I walked into Carleton Cycles on Kingsway that the light went on - I didn’t have to buy something already made and assembled in some factory somewhere, I could have a truly custom bike, made for me, fitted to my body, components of my own choosing, a colour that I really liked.

On went the light, out came the chequebook, and I was on my way.

The frame: Reynolds 531 double-butted tubing (state of the then art), fully lugged.

The gruppo: Campagnolo Record (I just couldn’t go the extra for the Super Record).



The saddle: Brooks, of course, the classic hard leather ball breaker with a can of Proofide leather treatment.

And the paint: a lovely cream called French Ivory.

A sweet, sweet bike, and all mine.

I rode it for a couple of summers, around the city, some time trials out at UBC, to and from work a few times, and then I stopped. I don’t remember why, something else must have come up, I guess.

We moved a few times, and the bike always came with me, gathering dust from here, cobwebs from there. The tires lost their air and the leather saddle dried out, but every time I noticed it I would think, “Nice bike”, and whenever I gave the front wheel a little poke it would spin and spin and spin.

Then last summer I thought, “This is a waste of a good bike, I should get it back on the road”, so I hauled it out of its dark corner, hosed it off, and walked it down to Bikes on The Drive, one of our local bike shops for a quick once-over. A tweak here and there, new tires and tubes, and I was riding again.