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!

State of the body

It's been 10 days since my first chemo injection, and I'm pleased that the nausea has pretty much gone away. I haven't had to take the as-needed anti-nausea pill (Stemetil) for a couple of days. My appetite is good, but the gastrointestinal distress that I had prior to the chemo is still there and probably worse -- when I lie down, I'm starving, but when I stand up I feel full and burpy, and I continue to have painful attacks of what I assume is heartburn (should have taken the hospital pharmacist's advice to use Prevacid every night). The nasty sweet taste in my mouth that put me off certain foods has faded. The really bad constipation seems to result from one particular anti-nausea drug (Zofran) that I take only for the first three days after the injection, so I'll know what to expect next time. Of course, I knew that five years ago, but it's amazing how much I've forgotten since then. Anyway, I'm sure my friends are not keen to read about my bowels, but if someone is reading this to gain practical information about cancer treatment, they might find this helpful. For the next cycle, I plan to take Stemetil every four hours for the first three days to nip the vomiting in the bud, and I'll be laying on more laxatives. If you are going through the same thing as I am, don't be a hero -- take the drugs.

I have developed neutropenia, which means my white blood-cell count is low and I'm prone to infection (the doctor says I should be more frightened by the bugs inside my own body than the ones on the people around me, but I still have a PLEASE WASH HANDS sign in my front porch). We have opted not to give me the thousand-dollar injection of Neupogen in hopes that I'll be OK without it -- I guess the numbers weren't too bad.

So far my hair is still on my head. I've developed some impressive zits on my face. The Porta-cath still hurts. No mouth sores so far. I'm sleeping much better than I was a week ago. I still have dizziness and a feeling of being car-sick -- that sensation that the air you're breathing is suddenly very cold and your head is woozy -- but that's decreased.

As for my back, the pain continues to shift and change, as it has for the past year with the slow and gradual collapse of that vertebra. I still have no pain at night. It's been amazing to me how much worse it got after the armpit surgery. If anything, my armpit feels worse than it did the first week after surgery; I still feel as though I have a large bulldog clip there. Between the tightness of the incision there, the spine pain between my breasts and the Porta-Cath on the right side of my chest, I feel like my torso is encased in concrete. But this week I seem to be able to lie on an incline again, which makes typing possible. If I have an active morning (meaning, put in a load of laundry, do some stretches, take a shower, wash my hair), by noon I'm in agony and have to take codeine. But if I skip the shower/bath and lie around a lot, I can manage without the painkillers, and can even walk for 10 minutes or so. I've been going out with the wheelchair, pushing it for a distance and then sitting in it for a while.

Interestingly, I believe my rib pain has diminished considerably. I don't know if the chemo can work that quickly, but my guess is that I do have bone metastasis, and the spinal kyphosis is just an unlucky coincidence.

Meanwhile, Dr. Second has disappointed me, as has his secretary. Since consulting with him on February 23, I have now called his office four times, once speaking to the secretary, three times leaving a message, to ask for the name of the back brace that the doctor alluded to in our interview but failed to write down for me. In my last message, four days ago, I stressed that I am in terrible pain and now require a wheelchair, but I have heard not a peep. Waiting a long time to see him is one thing -- I know he's incredibly in demand. But what would it take for him to tell the secretary the name of that brace and for her to call me back? Meanwhile, I have been in touch with a friend of a relative who had revision surgery after her spinal fusion with Harrington rods fell apart (this Wikipedia entry fairly accurately reflects my experience of that procedure, which she had in 1974 and I had in 1966 -- my spine looks a little like the X-ray below), and it turns out that her surgeon was the one I was thinking of getting a third opinion from, whom I'll call Dr. Third. In fact, as it turns out, I learned about Dr. Third because this woman posted about him on a Yahoo group devoted to post-scoliosis-surgery problems. She liked him a lot and was happy with her surgery. I think I'll try for a referral after all.