Saturday 21 November 2015

November 21: On the Road

It has been long since our last entry because chemotherapy is a long and, when one is lucky, monotonous process. Not so much in itself, since that weekly, Thursday needle in Napanee has become the highlight of my active life. One never knows what the needle will do to you, no matter how many times you've tried to strategize around it. But even for the better weeks between the injections, the days have their own, set physiognomy and not much change is to be expected. Thursday is the day of the injection and of 32 steroid and another of these cocktail chemo pills, to which we must add the daily 14 or so, depending on whether nausea or insomnia raise their heads. Once a month, the IV bone strengthening medication, which is to be taken for the next two years, together with steroids, and possibly those 3 antiviral, antibacterial antibiotics, the huge daily pills I most dislike. Imagine that, with all this chemistry doing its work in one's belly, which gets harder, bigger and bigger in order to accommodate those reactions, little energy is left for the goings on in the world. To the every morning question, "what are you going to do today?", the head says, sleep. And sleep I do, most of the time, when the head calls for it by simply shutting my tearful eye. Yes, one of the many secondary effects, tearful eyes uninterrupted. Hard to keep them open, impossible to read, to write, to look around at one's leisure. Never have I understood better those elderly who cry permanently, until now it was only a matter of, yes, appearance.

Since the weather has turned cooler, though, I find things are easier. No more drenching waves of perspiration, cutting my hair short has also helped, my hair has completely changed texture, I was told it would thin out and it did. By the end of the summer, in less than two months I had gained about twenty pounds, and I had to get used to carrying all that new weight and sleep on it, hours on end. It is one thing to acquire weight in time, and I am no stranger to that phenomenon, another, to just have it dropped on you overnight. The first months of this chemotherapy I had to wake up in the middle of the night and eat, at that time I was taking steroids four times a week, four times the ten pills, the doctor was surprised to see that I have not developed diabetes, the natural consequence of that onslaught.

Yet, in spite of the quantities of sweets I inhaled, just to get rid of the bitterness of the medication which, at night, requires to be tasted and appreciated for the poison it is, I did not yet develop the diabetes which haunted my father's life. And one month into the treatment, I had already reached some sort of remission, the numbers lowered to normal, the cancer retreating, it was what these numerical measurements indicate. The rest felt the same or worse, plenty of back pain which sent me, you guessed, to bed, every two hours or so. Yet we certainly did not interrupt the treatment, which will only come to its, possibly provisional end, in a couple of weeks, because we need to prepare for the transplant to come. Stem cell transplant, the making or the breaking, if only for a while, of this ongoing saga of unrelenting symptoms.

That transplant will happen in the beginning of the new year, January and February, at the Kingston hospital. It is for that intervention, now the standard treatment for this type of cancer in Ontario (I was told, sternly, because yes, I have tried to wiggle my way out of it, only to find out that the alternative is chemotherapy uninterrupted, into the future, whatever far or near that may take you), it is in light of those coming weeks of highly pitched biotechnological intervention, supported by shock chemotherapy six times the intensity of the one that I have already undergone, that the past five months get their full usefulness. To keep the cancer at its lowest levels, so that the killing of it, of these undying waves of burgeoning tumors, should be easier to accomplish. We get three weeks free of injection, which seems like a holiday, during the holidays.

This for the medical aspect of our life. We, of course, are used to make the best of it by now. Every Thursday morning we go for a forty minute drive, along the lovely country roads between Belleville and Napanee. We have been assigned to a satellite cancer clinic my doctor oversees there, just so we do not have to drive to Kingston, further away. At the beginning I was not happy, since Kingston does offer a few advantages to the cancer traveller. Pan Chancho and its pastries, olives, vegetarian turkey, being first. But we still get to go there, anyhow, once a month, for our doctor's visit. In Napanee, I have found a pleasant nurse who is half Irish half French, so we get to speak French and that helps. We laugh and carry on. A nuisance for the other nurses and patients, but what of it. Colin gets the half day off, and we certainly enjoy the ride to and fro. Many years ago, when Felix was still with us, we used to go often to Kingston to visit our friends, and we would stop on the way - we took the picturesque roads, in order to avoid the 401 - in front of a church whose parking lot was always empty at those hours, and where we would go for a walk with the dog around the church, to the back, into the lovely, equally deserted cemetery behind it. Felix would have some water, we, maybe a sandwich, he, some of that too, and on we went. There was no imagining how familiar this route would become, so many years later, neither what kind of familiar, what kind of heartening and disheartening at once.

I can say that for the last five months I have come very close to living the life of our dog and cat. Rocky has ceased to change beds, it is the big one he's occupying now, since there's always, or almost, company there. That's me, after the morning walk, after lunch, after the afternoon walk, and early at night. Alice has my company at night, when I cannot sleep for more that a couple of hours at a time. I come into the living room to do my exercises, or to walk around the table, or to have some sorbet, and she requires her water treat. The faucet opened just enough for her to receive this bounty of the cold running stream on her neck for what seems like a long while, all the while drinking from under it.

As for the holidays glistening just around the corner, we wish you to enjoy thoroughly all the good they have to offer. We thank all the wonderful thoughts which come so often our way, messages I have unfortunately so rarely been able to respond to in due time. Be sure that, in spite of that silence, we do rely on your presence in our life, and on your concern.

Saturday 22 August 2015

August 21: Watermelon

“Let’s not say it is special.  We don’t want special.  But maybe we can say it is a little better than average?”

“Yes,” our stand in oncologist said with a smile, “definitely better than average.”

Angela has completed cycle one.  

It ended with three days of special fatigue during which many plans were made, however small, and abandoned, for lack of energy.  

We were in Kingston yesterday to meet the oncologist.  Our regular doctor was away.  We met with his stand in, a woman with an Irish accent whom we are both certain we met before, but who, curiously, tried to convince us otherwise.  She was preceded by a resident who asked a few questions about pain, nausea, fatigue and other potential side effects.  He looked dumbfounded and disappointed each time Angela confirmed that yes, she did have pain, nausea, fatigue and so on.  His favourite phrase was “that’s excellent” which he used confidently when Angela reassured him she had not had a fever, and again when she told him she has no new sites of pain.  We quickly came to know what answers he could handle and what he couldn’t.  “There’s really only one question here,” he said, “whether we continue with cycle two or not.”  In his opinion there was nothing holding us back.  In our opinion this was never the question.

Our Irish stand in did not even sit for our brief encounter.  She reminded us that after all she was just standing in.  She was pleased however to tell Angela that her “counts have improved.”  Her blood protein counts have dropped from 18 to 6.  This, she said, was very good after one cycle of treatment.  

A drop from 18 to 6 is not special, but it’s better than average.  

We were happily reassured by this number 6.  We agreed 6 is a full 2/3 less than 18 and that 2/3 is certainly not nothing.  More importantly we were happy to know there is a score to keep. 

We returned home to start again, hopefully now a little bit wiser.  

We agree with our good doctors that there is little use in focussing on the negative.  There remains plenty to be grateful for.  We have been able, almost without fail, to have our breakfast on our back patio in Belleville each morning, surrounded by walls of flowers that have made us popular with the butterflies and bees of the area.   Every walk, in any direction from our home, is beautiful and serene, close as we are to the lake, the marina, and the river.  Belleville, as it turns out, is a good place for inner battles, calm, quiet, and orderly as it is in all of it’s appearances.  During our good moments, on those walks we manage together, or during breakfast, we put the other moments in their place.  

“I will never get my own shape back,” Angela said.  She has learned that steroids are a component of almost all phases of treatment of this disease.  She has gained 10 pounds in a few weeks, and, as is inevitable with this drug, is thinner in the arms and legs, rounder in the face and belly, more humped in the upper back.  This despite her effort to quench her increased thirst and feed her increased appetite primarily with watermelon.  We agree that watermelon these days seems crispier and more flavourful than ever before.  Angela, restlessly, has been consuming at least one, sometimes two, every night.  As the chemo has somehow perverted her tastes, sweet now tasting sour, she has given up the nougat and pastries that were her previous pleasures.  Also due to interactions with her drugs, dairy has been severely cut down.  “Watermelon is a godsend.”  If it hasn’t curtailed weight gain, at least it is something reaped from this otherwise fleeting summer, and in heavy doses it seems to alleviate the irritation in the bladder that comes from another of her drugs.

There is now little difference in the day and night for Angela.  She is as likely to be awake or asleep in the middle of night as in the mid afternoon.  Following the pattern of the ups and downs of her medications, days of increased restlessness alternate with days of increased fatigue.  One night I woke to the sounds of her rearranging the cups and plates in the kitchen cupboards.  When she finished she woke me to tell me that I’d better not screw up her new system.  She was convinced that if it wasn’t for my absentmindedness she wouldn’t have had to do this to begin with.  She then insisted that my absentmindedness was a sign of my indifference towards her and that obviously I didn’t care at all.  It was 3 a.m. and it was not an option to tell her, true as it may have been, that this was her steroids talking.  She knew this anyway.  Soon she tried to apologize while I tried to insist that I was truly far too absentminded.  We ate watermelon. 


Our doctors remind us that none of this, these ups and downs, are anything special.  What is most important is the number 6.  We agree.  Today I sat with Angela as she swallowed twenty of today’s thirty-five pills, nothing special.  Afterward we walked Rocky along the path by the river and spoke about Tzvetaieva, the greatest of Russian poets, and her quest of the absolute.

Saturday 25 July 2015

July 24: Akathesia

“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.