Oral hygiene

The past couple of days have been a bit miserable, despite the welcome presence of dear friends visiting from Alberta. I was warned that I might get mouth sores from the chemotherapy and that I should practice excellent oral hygiene and rinse my mouth four times a day with baking soda and water, which I did for the first few days after my first chemo injection. But I got confident the sores wouldn't arrive, and slacked off. (Standing at the sink to brush my teeth can be quite painful, although my recent purchase of an electric toothbrush has helped some.) Sure enough, I sprouted a big split-lip type of lesion right around the same time my hair began to shed, more than two weeks after the injection. I've got some prescription stuff to gargle with now, but the sores make it difficult to eat, drink and talk. At about the same time, I got a wicked sore throat that kept me up for a couple of nights, and last night I developed fever and chills. I am supposed to head for the Emergency department if my temperature exceeds 38 degrees C; last night it was 37.9, so I just stayed in bed (returning to the Emergency room is not top of my list of things to do, especially at night). Now it seems to have gone back to normal and my throat is feeling quite a bit better. I have hopes that the mouth sores will subside with treatment--but my shoulder blade is killing me. Boo-hoo.

On Wednesday, I went to see Dr. McCharm, the surgeon who removed my lymph nodes. I'm really discouraged about the fact that, since the surgery almost two months ago, I have been unable to walk much, and my underarm is still numb and hard and painful. "I told you it'll be like that for the rest of your life," said the doc with his usual grin. What I remember him saying before the surgery was "It will never feel the same." Naively, I took that to mean that it would get better but there would be some permanent minor residual pain in my arm. I shudder to think it will always feel this way, like somebody sewed my underarm to my shoulder blade from the inside. He conceded that the havoc he wreaked on the ligaments and nerves in my underarm could well have affected the musculature in my back, which is why I have so much trouble walking. Not great news.

Meanwhile, I told him that the person I went to for lymphatic drainage massage had been unwilling to massage my actual incisions for fear of stirring up cancer cells. He said there was no reason to worry about that, because he had removed the tissue with clear margins, and he was in favour of massaging the incisions. I wish I'd done it sooner--it feels like there's serious adhesion going on there.

Pollyanna moments:

• Playing Lexulous online with Matt in real time, sitting side by side, each with our own laptops, in my living room.
• Hugging Ken because he's not too tall.
• Finishing a great book: Down to This: Squalor and Splendour in a Big-City Shantytown by Shaughnessy Bishop-Stall, a worm's-eye view of the rise and fall of Toronto's Tent City.

The bald and the beautiful

Right on schedule, my hair began to fall out today, two weeks after my first chemo injection. I gave it a tug just for fun and a small hunk pulled out; then I washed it and combed it wet, and a fair amount came out on the comb. I couldn't see having to pick up long strands everywhere in the house and down the drains. So I went to a local hair salon and had it shaved off, down to about a half-inch, as you can see in the photo along the right. My friend Matt pushed me in the wheelchair, and the hairstylist, who's probably around my age or older, thought Matt was my son. Matt is five months my senior. Sigh. I think constant pain does a number on your face! And Matt is pretty well preserved.

I had hair almost this short in the '80s (my nickname was Cynth Vicious), but I could pull it off when I still had my youthful cheekbones. I now look a lot like my dad in his 1960s brush-cut phase. Maybe I should get a fedora... The problem is that I look terrible in headgear of any kind. I have purchased two chemo scarves, one a dark brown sort of turban and the other a lovely red silk number. But neither is particularly flattering. I'm not sure now that I want to spend money on a wig -- my insurance covers only $100, and I think they're pretty costly.

Please, please, let me hold on to my eyebrows. I will trade my pubic hair for those any day!

Here we go again...

January 19, 2009

Well, it looks like the Clothesline Saga is going to resume, and veer off in another direction. I kept up this blog for only a few months in 2006, and then stopped it when I began doing my master’s in education while working. Life was far too busy – for a year and a half I didn’t have a single day off. But I also felt the common uneasiness about blogging – was anybody reading? (Turns out more people were than I suspected, which embarrasses me because I read almost no personal blogs myself.) Was it just self-indulgence? Was it journalism? I was mostly posting observational stuff; I had no desire to expose my personal doings or feelings to the world in such a forum.

Recently I wrote an article (it’s coming out in the March issue of Best Health, possibly the April issue?) about writing as a means to promote health. It deals with the science behind writing as a healing art, and one of the people I quoted was Tasha Westerman, who blogs at http://tashaengel.blogspot.com. She considered herself a non-writer but started the blog for practical reasons – her diagnosis of breast cancer (while her husband has brain cancer and her best friend leukemia) prompted lots of calls and emails from friends and well-wishers, which she found overwhelming, not to mention the fact that it’s tedious to repeat the same update over and over again. The blog helped her keep people informed. Tasha says she later realized the benefits of writing about her symptoms, test results, diagnoses and treatments; it helped her clarify her decision-making process (there’s so much decision-making involved around cancer – see my article “Journey Through the Labyrinth” on my website,); and she thinks it’s had a positive effect on her emotional well-being, which can only help her physically.

So I’ve decided to take the same tack here, and use this blog to report on my situation, for those in my circle who want to know what’s going on with me, whether they check every day or once a month, or whatever. I hope I will still hear from people anyway, but at least we can talk about something more fun than bone scans and Her-2 neu proteins and radiation burns if that stuff has been dealt with here.

I’ve read one or two amazing blogs kept by cancer patients that were beautifully written and informative; for example, Leanne Coppen’s blog on Chatelaine.com about her treatment is well-written, blunt and funny. I don’t know whether I’ll be up to that. Mustn’t forget that having breast cancer the first time through is not the same as having it the second time.

As of today, I have not yet told my parents what’s going on, so if you’re reading this, please don’t spill the beans yet to anyone I’m related to apart from my siblings, who do know. And Mom, if and when you read this, I’m sorry.

The story is: After celebrating my five-year breast cancer–free status last October, it appears my cancer has returned. Another word for that is metastasis. It’s not good news. But advanced breast cancer can be managed in many cases, and I just have to hope that mine will be one of those cases. I have actually been too afraid to read much about recurrence and metastasis so far, but I guess I should start soon. The short version is that I have a 2.5-cm tumour in my left armpit (same side as five years ago, when I had two lumps removed from my left breast), and the results of a CT scan from last week show metastasis in my ribs and in two places in my spine. The good news is that there are no lesions in my liver or lungs. I suppose it’s also good news that the lump is in my left armpit because I’m right-handed.

My oncologist said she wanted the lump to come out soonest, and I have an appointment to see a surgeon in two hours. But she also said it would be better to try to shrink it first, with radiation and/or chemotherapy, because removing a lump that size with all the flesh and lymph nodes around it could really wreak havoc with my arm for the rest of my life (that’s called lymphedema). However, apparently you can only radiate a given spot once, and I’m pretty sure my armpit was radiated five years ago. It wasn’t supposed to be; they were trying to aim the beams only at my breast, as I recall. But the technicians had a hell of a time positioning me on the table in such a way as to miss my armpit, because my fused spine makes me so inflexible. And it wasn’t long before I noticed that I have just a tiny fringe of hair across the top of that armpit – it appears that my sweat glands and most of my hair follicles just died. I used to joke that they could have been kind enough to do the other side and save me all that shaving and deodorant.

But until I see the radiation oncologist, I don’t think the surgeon and the medical oncologist can make a decision on treatment – I believe they all have to sit down together to do that. While the MO seems to think it should all happen this week, my experience is that it’s like herding cats. She made the referrals last Thursday and when I checked the following day -- a day the radiation doc, who’s normally at Princess Margaret, was actually in my hospital, St. Michael’s, doing a clinic -- the referrals had not been faxed through. So I missed seeing her.

Meanwhile, the pain in my upper back is about the same as long as I take Naproxen and usually some Tylenol 3s. The hardest things to do are eating, cooking, washing dishes and working at a desk. Lying on my back is not too bad. Thank goodness for laptops.

So – I’ll let you know what the surgeon says, and in another entry will recount the struggle I’ve had getting somebody to pay attention to this back pain for the past year.