“Only a greater pain can stop this. I can’t think of much else.”
Yesterday Angela was in excellent form. I returned anxiously from work in the evening to find her making a salad. We took Rocky for a long walk. She had already swallowed more than 30 tablets of various medications by that time of the day. She was happy to say that the pain in her right hip already seemed to be less. She thought the new steroid was giving her more energy. It was day 2 of chemotherapy.
Day 1 had been a workshop. We were 5 hours at the Kingston Regional Cancer Centre. We met the members of her new care team, each in their turn: oncologist, lead nurse, chemotherapy nurse, pharmacist. Angela gave more blood. There were new images taken of her hip. By the end there was a binder of information. There were a number of instructions, each frequently repeated: take your temperature daily, avoid dairy, avoid the sun and wear sunscreen, protect you pets and others from the medications that will be in you (always flush the toilet twice, if you vomit or bleed wash contaminated cloths separately, wear plastic gloves to clean spills), carry your fever card at all times, avoid green tea. There were many warnings: mental changes are often the most difficult, expect hair thinning but not complete hair loss, extent of nausea is variable, could be restless or exhausted, cell lines will drop so prepare for infections, bleeds, bruises, and anemia. To complete Day 1 Angela received her first injection, a harmless looking fluid injected subcutaneously in the abdomen. We left the cancer centre with a bag full of medications.
The oncologist spoke softly and seriously. “There’s nothing cosmic in this,” he said. Angela had wondered why now. She had mentioned how before her recent MRI she had been feeling well. The summer had been perfect. She had twisted her ankle though, only a month ago, and how could we forget that not long before her initial tumour, four years ago, she had broken her other ankle. She said that she regretted her shoes. Our serious oncologist said he wasn’t certain what Angela’s question was. Angela was certain she didn’t ask a question. He proceeded with his explanations.
He reviewed Angela’s MRI and skeletal survey. There are now a number of small tumours apparent in multiple vertebrae, a rib, and in the trochanter of her right femur (the bridge that connects the long bone of her thigh to the ball that fits into the hip socket). Her blood work has otherwise been stable. He recommended starting chemotherapy immediately. He told us about CYBOR-D, the recommended regimen of chemo agents (CYclophosphomide, BORtezomib, Dexamethasone). He told us that we would have to drive to Kingston every thursday for the next four months to get an injection of Bortezemide. The other two medications will be taken orally at home, albeit in an irregular schedule, some days on, some off, over a one month cycle that is repeated over four months. Everyday she will take an antibiotic, an antiviral, and other side-effect medications. After four months the hope is that Angela can be prepared for a stem cell transplant, a one month process by which stem cells are removed from her blood and preserved. Then there would be a four week admission to hospital for high dose chemotherapy intended to kill her existing bone marrow including the cancer cells, whereupon her stem cells would be returned to repopulate. Then, with some luck, recovery, which, our oncologist says, “is not usually fast.”
We asked nothing about the measures of success in this. Angela had told me previously that she was not moved by statistics. We know already that outcomes are variable. Some people can see their myeloma pushed into remission for a year or two, some people much longer. There are too many variables to give meaning to averages. Much of this, of course, is cosmic. A lot, we must believe, is left to will.
Expect surprises. The road won’t be smooth. Already we know that the tumour in Angela’s femur is, most particularly, in a threatening spot. It lights up in the very place where hips tend to break. There is nothing cosmic in this. Our good oncologist will look at the X-rays and decide if an orthopaedic surgeon needs to fasten a metal brace to the bone to prevent a fracture, or if radiation can be used to shrink the tumour. He will let us know.
At the end of day 1 Angela commented that she could feel the medicine moving through her, into her nose and her mouth. In the morning she showed me the pink blotch on her abdomen where the medicine had spread from, like a large birthmark. It was cool to touch, but not tender. We shrugged our shoulders.
At the end of day two Angela wanted to watch television. We watched a couple of TED talks.
Tonight Angela was anguished. She stayed in bed this afternoon, sleeping off and on. She used stemetil to fight nausea. She skipped dinner. A crawling feeling took over her legs and back. She felt tired, but had to move. I walked behind her, back and forth, from one bedroom to another, watched her lie down and stand up, roll, stretch, rub her legs. I rubbed them for her. I turned around and found her pressing a wooden spoon into her thighs. “This has to stop,” she said.
“Don’t do this to people,” she said. “Don’t give these drugs to people.”
And then she cried for the animals. “They test these drugs on animals.”
I told her she was experiencing akathesia, a crawling, restless feeling, in her case quite severe, caused, I hope, by the stemetil. I told her it was a rare side-effect that will subside. I gave her extra lorazepam. She’s now sleeping. I hope I’m right.
Angela asked me to write this blog. I struggle, as I write this, with my own akathesia. Time has passed so beautifully since I last wrote on RockAlice, and yet, at the same time, it has not passed at all. We find ourselves grateful, once again, for the expressions of concern and the offers of help that have come from friends and family in recent days. There is nothing cosmic about this, care is important. Let’s keep in touch. I will keep you posted.
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