I am undeterred. Although the effects of my first treatment session were horrendous and completely unexpected. I am able to regroup myself. I decide that if I can find some way to sleep through the sessions I might be able to continue. I make an appointment to see my family doctor, and tell her I want a prescription for fentanyl patches and ativan, the idea being that I will get some pain relief and sedation during my sessions. I tell her I am doing my own treatment, that it is unapproved and illegal. “Don’t tell me anything more” she says, “I don’t want to know”. But she writes the prescription anyway. “I worry about you” she tells me as I leave. Indeed…..
But I am excited. As bad as my first session was, it is clear my treatment packs a punch. If the effect on my healthy self is so severe, I reason, imagine the effect on my cancer.
For my next session, a week later, I prepare myself properly. Although it is a hot summer’s day I pile the quilts upon my bed, turn the electric blanket on high and lay out my clothes. The fentanyl patch was applied four hours earlier (to no apparent effect), I take an ativan, have a hot shower and crawl into bed. Bob Dylan on my playlist, I lie there sweating and checking my temperature. After half an hour I inject myself, again through my port, with the compound that I had prepared. I am using the same dose, I haven’t yet figured out that I overdosed myself the first time. Doing these injections continues to be difficult. It is painful, several attempts are needed, not an easy thing to do but I manage. I rush back to bed and wait, a vomit bowl next to me and a puppy training pad under my buttocks.
After 40 minutes the shakes begin. They are severe, but I know what to expect and ride it out. After 20 minutes they stop, my fever develops and will ultimately reach 39.5C. The ativan and fentanyl seem to have no effect. But this session is much better. There is no vomiting (I haven’t eaten all day), no diarrhea. It is unpleasant but manageable. Afterwards I am wiped, low blood pressure, but all in all doing well. The next day I am sill weak, but nothing like the first time and after two days I am back to normal.
And so, for the next six weeks I continue these sessions, three times a week. I had booked time off, way back, hoping to spend a few weeks camping. Obviously that is not going to happen, but it gives me the opportunity to concentrate on my treatments without distractions. All these sessions now take a predictable course. Shakes, followed by fever, and after four hours or so the effect wears off. During this time I lie there, Bob dylan in the background, my mind racing, my thoughts bouncing chaotically through my mind, unable to relax or sleep. There are strange psychological effects. In the last hour or so of these sessions my head is filled with the bleakest and gloomiest thoughts. Some of the darker passages in this blog come from these times. I wallow in these thoughts and images, I relish them, it seems I am accessing repressed parts of myself that are usually hidden. And then, as the fever wanes, a strange feeling of elation comes over me. I am (quite literally) laughing, I feel buoyed (mentally at any rate), I am making jokes, I carry on humorous conversations with imagined people. A very strange, but not unwelcome effect. Steve, my email mentor in his, tells me it is not uncommon. And once the effects have worn off, and I am able to stand and walk a little I become ravenously hungry. And so, in the early hours, I shuffle to my car in my dressing gown and drive to MacDonalds. Three egg and sausage McMuffins wolfed down will do the trick.
But not all is plain sailing. I don’t eat on the days of my treatments, and as soon as I have recovered from a session it is time for the next. I am starting to lose weight, I am getting run down. My secretary is worried. And the injections are getting more difficult. On one occasion some of the compound misses the port and ends up subcutaneously. This causes an inflammation around the port site. A few days later I notice a swelling above my clavicle on that side. I am worried the cancer has spread to my lymph nodes, although I cannot feel any. Then I notice that the veins around my port side and in my right arm appear to be distended. The penny drops…..a deep venous thrombosis I suspect. And sure enough, an ultrasound Doppler reveals that my internal jugular vein, my subclavian vein, and all the veins down to my upper arm are completely thrombosed. Two years ago I would have been alarmed had this happened to me. Now – I don’t care, I’m just glad it is not my cancer. Heparin it is then, low molecular weight, to be injected daily, for life says my oncologist without apparent irony. And from now on, I inject myself through a vein in my elbow, like a heroin junkie.
A few weeks later I develop an inflammation of my right testicle, associated with a bladder infection. Extremely painful and it takes two courses of antibiotics to clear this up. Why? Wasn’t it enough?
After six weeks of doing this, feeling run down and a little despondent, I am wondering if any of this is doing any good. I had wanted to postpone this, but I cannot contain myself any longer. I need to know whether any of this has a purpose. And so I ask for another CT scan, which is done in September. The result is mixed. My lung lesions have increased, practically doubled in size. But three of the four mediastinal and retroperitoneal tumours have shrunk significantly, one has remained stable. I ponder these results, and manage to persuade myself that on the whole this suggests evidence of an effect. I try to imagine what my cancer would have done had there been no treatment at all. Surely it would all have been worse I tell myself. And so, with what limited encouragement I can muster I continue the sessions. Except that I reduce the frequency to twice a week. I am getting so run down that I feel I have no choice.
Following my scan I meet with my oncologist. “Your cancer is behaving very strangely” he says. I say nothing. “Your lung lesions have doubled in size” he continues, and asks if I have any symptoms. I don’t, but he tells me that in the next three months or so I will develop pleural effusions and will become short of breath. All this without a hint of sympathy, but I am getting used to that.
His comment worries me greatly. Many years ago, while still a medical student, I had taken a summer job as a nurses aid in the neurology ward. One of the patients haunts me. A man in his 40’s, with terminal lung cancer, had been admitted to the floor (he had brain mets, so a wily oncologist had managed to get him admitted to our ward). He was put in a corner of the ward, so the other patients (and I suspect the nurses) did not have to look at him. For weeks this poor wretched man lay there, his chest heaving, struggling for air, his gaunt, terrified eyes pleading for help with anyone who came close. We all avoided him. On one occasion the doctors were doing their rounds, and one of them, in an act of perhaps the worst gratuitous medical cruelty I have witnessed (and I am an obstetrician!) picked up a picture of this man’s wife that was on his bedside table and held it in front of his face. Unable to speak, a single tear rolled down his cheek. Satisfied, they continued their rounds.
And this is what my oncologist suggests lies in front of me. Well, not for me, this is not how it will end. If it comes to that, I will make “my own arrangements”. I will digress a little here. Those of us with stage 4, advanced cancer know full well the scenario that conventional medicine has in store for us. Palliative chemotherapy, possibly radiotherapy, in an attempt to prolong life, eking out what time we may have. And then, when inevitably there is no further benefit, when there is nothing more to be done, hospice care will be tactfully suggested, with its attendant comfort measures, pain relief and sedation. And most of us will take this path, because, well, we have no other choice. And so we embark on this path that they have set out for us. We will care for you they tell us, we will do everything to help your suffering, we will be by your side during this final stage of your “journey”. Your family will be there with you, full of love and grief, by your side at all times. There is solace in all this. To know you will be cared for by kind doctors and nurses, caressed and carried by your loved ones until the end. But the down side of this scenario is that…..at the end of it you die. And for all the kind, soft, uplifting words that won’t do for me. I will go it alone, on my own terms, at a time of my own choosing.
In the course of October and November my condition deteriorates. I am increasingly tired, I struggle to maintain my weight, I develop chest pains, back pain and become short of breath. I have no doubt that these symptoms are due to progression of my cancer. And I know enough about cancer to know that when you become symptomatic, when the cancer burden mounts there is a tipping point, where things can progress very quickly, in a matter of weeks even. There are times I fear I may not make it to Christmas. In my pessimism, I reduce the frequency of my sessions to once a week.
I am depressed, despondent. I have always felt at peace with the thought of death, but that is an easy enough thing to say if death is still some way off, if you still have some hope, however unrealistic, of a cure. But when death comes close, this close, when you are thinking in terms of weeks, when every day you feel a little bit worse, despair sets in. This is the low point of my disease so far. It is not easy.
At times self pity overwhelms me. It is unlike me to feel sorry for myself, but I let it flow. I stand in front of the mirror and study my body, my face. Still animated, but not for long. Age and disease have taken their toll. More and more I see my father’s face. I remember kissing my father’s cold dead lips, the last thing I ever did with him. Soon I fear my own face will be like his, cold, unmoving, dead. I wonder if my own children will kiss my lips.
My next scan is in December. I make my way to the hospital. I feel numb, it all seems pointless. I know what the result will be, the scan will confirm that I will soon be dead. I lie on the stretcher, looking at the grey arch of the machine, the green blinking light. An intercom voice tells me to breathe in, hold, and out again. I am crying.
I do not sleep well that night. In the morning, tired, depressed and with a fear in my gut of what the day will bring I call my office and tell my secretary I will not be coming in that morning. “I understand” she says, and by the way “your stuff came in”. “What stuff” I ask, not expecting any results yet. “Your scan” she says. My heart sinks, I had hoped to postpone this moment, for just a little bit longer. “It looks good” Diane says. I don’t understand, I ask what she means, to repeat it. “It looks good” she says again. I am trying to compute what she is saying, I dare not believe. I make her read out the report to me. All of my cancer is in regression the report says, significant shrinkage. The rest is a blur. Confused, I mumble “thanks” and put down my phone.
I lie there, staring at the ceiling, my mind going this way and that. I cannot get my thoughts around this news. Fitfully, I drift off to sleep, waking several times, unbelieving. That afternoon I go to work, and read the report for myself. It is even better than I had realized, my lung lesions have reduced in size by half, some areas are showing cavitation suggesting dead tissue, the other tumours have continued to shrink.
Over the next few weeks I slowly come to terms with my new situation. My treatment is working, of that there is now no doubt. Glenna cannot believe it. “These things don’t happen to people like us” she says. My children are delighted. And me? it takes a long time for this to sink in, weeks, to readjust myself, this dramatic turn around in my prospects, to believe that I will live, a little longer at any rate, to believe that possibly, dare I think it, there may even be a cure. I cannot begin to express the enormous joy that I am experiencing, the thought of another spring and summer. I decide that all my symptoms were due to depression, the effects of my treatments. I take a break from my treatments, and for a whole glorious month I stop my sessions. I feel well, all my symptoms magically resolve, no more backache, no more shortness of breath, my appetite returns.
A week after my scan I meet with my oncologist. “Your can looks good” he says, “you must be doing something”. “Can you think of anything that might be doing this” I ask. He says no, but you are doing something. I look at him, trying to decide if I should tell him. “Well”, he says, “if you tell me you have to kill me?” In the end I decide to tell him, on condition of absolute secrecy. After all, what is the point of him being my doctor if I don’t tell him. So I explain, briefly, what I am doing. He is not familiar with my treatment, and seems not particularly interested. “Well”, he says finally, “whatever it is you are doing keep doing it”. So now I can claim, perfectly truthfully, that I am doing this “on the advice of my oncologist”. I am even beginning to like the miserable sod.
There are 40 or 50 of us, gathered in the back room of the club house of our local golf club. We are here to listen to Dr. Kevin Wilcox (wish I could use his real name). Wilcox is a Canadian trained physician (McGill, we are told repeatedly, the most prestigious medical school in Canada) and practices alternative cancer treatments in the Bahamas. Supposedly the audience is made up of medical people but I don’t recognize anyone.
Wilcox runs through the usual supplements and diets. Vit D, Vit C, turmeric, selenium, mushrooms, oxidants, anti-oxidants (I can never remember), all the usual stuff. The audience nods happily at each claim Wilcox makes. In front of me sit two middle-aged women, with sensible skirts and identical pixie bob haircuts, the uniform of middle aged feminism. Wilcox now goes into the meat of his presentation, describing the treatments he offers at his clinic. And there are several…… he grows his patient’s cancer cells in his lab he declares, and tests to see which chemotherapeutics are effective (never mind they tried this 30 years ago – it didn’t work). Wilcox has an irritating habit of tapping the side of his head and saying “we’re using our brains” when he describes his treatments. As if no one else is. “We take serum from a patient who is cured” claims Wilcox, “and inject it into our cancer patient”, tapping his head again. Brilliant of course, an anti cancer serum. I kick myself. Why did I not think of that I wonder, I should be living in a beach house in the Bahamas. This so called anti cancer serum notion incidentally has been around for 30 years or so. It has been extensively researched, no one has ever identified what constitutes this “serum” and no one has ever shown it works. Never mind, it sounds plausible enough I suppose. One of the pixie feminists turns to her companion and says “it’s so simple isn’t it?”. Her friend nods enthusiastically.
I am enraged at all of this, the mendaciousness, the cynical opportunism, the gullibility of people, the exploitation of people’s fear. Wilcox is not a serious man I conclude. I cannot decide if he believes all this or if he is aware deep down that he is a fraud, a charlatan, a quack. For all the head tapping he is not “using his brain” as he claims, at best he has a hunch (and many of them, a new one every three months or so it seems). He peddles hope, not science. At no time does he present us with any outcomes of his treatments. I’m not expecting miracles, but you would think that he would give us some idea of the number of patients he has treated, their characteristics and outcomes. But nothing, just more and more claims and tapping his head. And his audience cannot get enough, they lap it all up. In the front row sits a young woman with huge shoulder pads. She goes on and on about life style, poor eating habits and so on. God protect us from these self appointed saints who will blame the patient for their disease. Tell it to a thirty year old mother with stage 4 colon cancer I feel like shouting. I cannot take this anymore and halfway through the question period I leave. This is not for me.
There is another reason why I dislike all this alternative treatment talk, a historical and philosophical one. Many of these treatments find their origin in the German speaking areas of Europe in the 19th century. This was the time of the German romantic movement, a reaction against the anglo saxon philosophy of enlightenment and scientific enquiry. The German romantics rebelled against what they regarded as a mechanistic and reductionist view of mankind and disease. Instead they wanted to focus on the whole person, in harmony with nature and taking sustenance and cure from his natural environment. All very well, except that some hundred years later this philosophy morphed into a “Blut und Boden” idea, which, combined with a vicious racism and a malignant form of social Darwinism ended in, well, we know how it all ended. ZyklonB may yet be the only effective “alternative” treatment. I wonder if the pixie feminists and the shoulder pad lady know where all this comes from.
But there is one treatment I am interested in, the treatment that Trischa, my pharmaceutical rep friend introduced me to. I have to be circumspect about this. This is a treatment which, though over a hundred years old and perfectly safe, is not approved. Not in Canada, not in the US, not in Europe, Australia or New Zealand. The only places where this treatment can legally be given are the Bahamas (Wilcox again), Mexico and I believe Peru. I am told that if the “authorities” were ever to discover that I am doing this in Canada I would be open to prosecution and even incarceration. So I have to be secretive about the whole thing. I have to do this alone, without medical or nursing assistance. I cannot tell anyone. And if anyone does ask ….. I am doing this in the Bahamas, in a very real sense. And I will refer to this treatment not by its real name but will simply call it “IT”, as in “Immune Treatment”…..
In a way the massive recurrence on my June scan was a good thing. There was no arguing with these findings, no way of fooling myself, this was a lethal, incurable recurrence. Had it been a single, isolated area of cancer, I would almost certainly have chosen further chemotherapy. But my circumstances are stark and unforgiving. Chemotherapy cannot, will not cure this, my oncologist has nothing to offer except more misery and then death. Nothing good lies ahead of me. And so my quest begins. I begin to do some serious research on this treatment. And the more I learn, the more I persuade myself there is real merit in this treatment. And there is now a perfectly plausible scientific explanation for its effectiveness. IT involves the intravenous administration with a concoction of killed bacteria. This will cause a stimulation of the immune system and a high fever. The fever causes the traumatic death of a number of cancer cells, releasing their antigens into the circulation and the innate immune system, stimulated by the dead bacterial toxins, attacks the cancer cells. It all ties in very nicely with recent advances in immunology, a better understanding of the role of dendritic cells and killer T’s. All very interesting, encouraging even. As I explore this further it becomes clear that the historical data on this treatment, though mixed, are on the whole encouraging. It has been tried in a variety of cancers, and is associated with a 90% improvement in symptoms, and a cure rate of up to 50%. And this in patients who are usually end stage, with advanced, terminal disease and no further options, their health compromised by cancer and multiple courses of chemotherapy. These results are better than anything modern chemotherapy offers. There is not however much experience with IT and colon cancer.
Somehow I need to find a way to access this treatment in Canada. I have no intention of doing this in the Bahamas, under the so called care of Wilcox, subsidizing his life style. I contact my friend Terry, whose lymphoma was cured with this treatment. He puts me in touch with a physician who treated her bone marrow cancer with IT. She is cagey, won’t tell me where she gets her bacterial solution, but gives me the website of the company that makes it. I contact the company, and, as expected, they respond by telling me that they cannot help me as the treatment is illegal in Canada. They refer me to (surprise!) Wilcox, who seems to have rather cornered the market. I am not deterred, I write back, pressing my case, emphasizing that I am a physician myself, and ( cleverly I think) that I admire the company’s philosophy but that having met and corresponded with Wilcox I am not sure he is the right man for this. My flattery pays off. The company CEO calls me and promises to refer me to his scientific advisor. Steve, as I shall call him, calls me within the hour. He is a professor of medical physiology, somewhere in North America and after some discussion he gives his approval to my getting the treatment. I am in business! I contact Walt, as I will call him, the CEO of the company. I have to go and collect the medication myself, he won’t send it by mail. No matter, it is a 10 hour journey, and I will happily make it.
I am filled with excitement and optimism. For the first time since all this started I feel I am control, no longer helpless. I am confronting my cancer, I will deal with it on my terms, I am in charge. A few days later I travel to Walt’s lab. It is located in the industrial area of a medium sized city. Some 1500 – 2000 square feet, half of it taken up by a reception area and conference room, the other half a laboratory. Walt looks to be in his late fifties or early sixties. A busy, energetic man, a no nonsense manner and a quick intelligence. I like him, and would have liked to spend more time with him. His background he tells me is in laboratory design (he was involved in the human genome project). Some years ago he became CEO of a company interested in developing vaccines against cancer, a company in which several nobel laureates participated. Walt became disappointed at the lack of progress and came across the IT treatment. And here is where it becomes interesting, and which tells you something about the man. Not willing to rely on second or third hand accounts, he went to New York, where the treatment originated in the late 1900’s and searched out everything the originator had written. From this he concluded that the secret lay in the preparation of the solution, preparing and killing the bacteria in such a way as to maintain their antigenic properties (you have to kill them at a low heat apparently, so as not to destroy the proteins). And after having done this he wrote a book about it (available at Amazon.com, #5,413,336 on their best seller list, buy it, it makes a great gift), started his company, set up a scientific advisory board and built his laboratory.
Walt gives me a brief tour of his lab. It is clean, well organized and quite simple really. It does not seem to take much to grow bacteria and kill them in a low temperature water bath. Walt gives me a copy of his book and a year’s supply of the compound. I ask him how much I owe him and he tells me he is giving it to me for free. I ask him what his business model is. Walt smiles at this. He tells me he is trying to get as many patients as possible and compile a data base of the outcomes. None of his patients has died in 18 months he tells me. This is extraordinary if true (and I believe him), given that all of these patients have incurable, often end stage disease, all other options having been exhausted. The purpose of all this is to amass enough credible evidence to get approval for a properly designed trial to demonstrate the effectiveness of this treatment. So far, in a variety of jurisdictions, including USA, Canada and Denmark permission has been denied, despite considerable support from oncologists in those countries. The latest reason for refusal is that Walt’s lab does not comply with international standards. The company is now trying to find investors to obtain the necessary $3 million to build a new lab and perform a modern and properly designed trial of this treatment. Once the effectiveness of this treatment is established he will sell the company and, for all I know, become Wilcox’s neighbour in the Bahamas. That’s the business model. It all seems many years away.
But I am happy and excited. Clutching my little box of IT compound I make my way home. I can barely wait to get started with my treatment. It is a month since my June scan and I am worried my cancer is growing out of control. So the next day I start. I know the protocol by heart. Take a .5 ml syringe, draw up .1 ml of the compound, dilute to .5 ml, discard .4 ml, dilute again to .5 ml and so on until the desired concentration is reached. The dosage is to be increased until the desired response is obtained. There is one slight problem. My secretary has ordered .3 ml syringes, so I have to convert the amounts. I can do this of course, because I am after all university educated. The protocol calls for preheating your body prior to administration, so as to reduce the rigours and shaking that will occur. These rigours will start some 45 minutes after the injection, will last 20 -30 minutes and afterwards a fever will occur. A good response is anything over 39C, and this will last for two hours or so. And then, I optimistically expect, everything will quickly go back to normal.
And so I prepare my solution, checking and double checking the amount. I have heard that at the low starting dose nothing much usually happens, so I don’t bother with the preheating and all that. In any case it is a warm early evening in July, I tell myself. I decide to use my port, a device implanted in my chest wall with a catheter that feeds into my central vein, close to my heart. Usually a specially trained nurse will do this injection, using a special type of needle. I don’t have a nurse, and I don’t have the needle, so I am using an ordinary syringe and needle. I stand in front of a mirror, disinfect the area and plunge the needle into my chest. This, I can tell you is quite painful, and is by no means an easy thing to do (think Pulp Fiction). I have to take a deep breath and grit my teeth to do this. My first attempt fails, obviously I am not in the right place. I try again, using a longer, bigger needle. This time I am successful, the syringe empties easily without resistance. I slowly inject the full contents into my central venous system. Mission accomplished, I go sit on my porch and enjoy the warm evening sun wearing just a pair of shorts. After about 15 minutes I notice a slight trembling in my lips. This is encouraging, I think, obviously there is a response. Minutes later I begin to shake uncontrollably. My teeth are clattering so much it hurts. My arms and legs are shaking as if I am having a seizure. I panic and run into my trailer. I realize I need to heat myself as quickly as I can. But I haven’t fed the dogs yet. So, shaking and teeth clattering I try to fill their bowls, dog food flying all over the place. And then I run to my bed, switch on the electric blanket, put on fleece pants, several fleece pullovers and dive under the covers. The shaking and rigours continue. I curl up in a fetal position and try to ride it out. I may be an atheist, but oh my sweet Jesus, I have never experienced anything like it.
After 20 minutes the shaking stops. Just like that. I lie very still, my head is pounding, I am hyperventilating, my heart is thumping. Slowly my fever develops. It will eventually rise to 39.9C. During this time I become nauseated and vomit numerous times. I drag myself out of bed to grab a bowl. I develop uncontrollable diarrhea. Although my toilet is only a few feet away I do not make it. I shit all over my pants and all over the floor. I sit slumped on my toilet, unable to move. Finally I have enough energy to clean myself as best as I can and roll back into bed. This happens several more times. I have never felt so ill in my life. Not after my surgery, not during chemo, never. After a few hours my fever subsides, the nausea settles and my headache improves. I am dying of thirst and drink a family sized container of orange juice. I am so weak I can barely stand, my legs are buckling, the slightest activity leaves me winded. I check my blood pressure, it has dropped to 80/50. Had something like this happened to a patient of mine she would probably have ended up in ICU. As it is I lie on my couch, unable to move, unable to sleep. After four hours I crawl to my bed and drift off. The next day I am weak, can barely stand, my legs are like jelly. I spend the day on my couch. On the third day I begin to feel a little better, I am able to walk my dogs very slowly. Over all it takes me five days to recover enough to do my daily activities. And I am supposed to do this five times a week……
A few weeks later, as I go over my treatment record, I realize that (a faulty calculator no doubt) unintentionally I gave myself ten times the usual starting dose…..
It is not an easy thing to refuse the offer of an another six or twelve months of life. When faced with imminent or fairly imminent death life becomes, well, very precious indeed. There is an advantage. Not everyone is granted the opportunity to know, more or less, in advance that death is near. It allows us time, precious, priceless time. Time to spend with family and children. Time to squeeze into those few months all the love of a life time. Time to pass on our wisdom and lessons learned. Time to make amends, to tie up the ends of a disordered, neglectful life. Time that we imagine will be intense and profound. Time that must somehow, surely, make up for the years lost. Time to say goodbye.
But it does not seem that way. Life, my life, other people’s lives, it all goes on. The day to day routines continue their grip. I still need to work, to have some kind of income. I need to buy groceries, cook my meals, prepare for the long winter that is around the corner, although I don’t know if I will be there to see the end of it. My children still go to school, they have their activities and their time with friends. So really, life when you are dying is not all that different than when you are not. But every day, as the clock winds down, I am aware of my circumstances. It does not leave me. There will come a day, not so very long from now, which will be my last. I draw comfort from the fact that after that day nothing will matter anymore, not to me at any rate. And, strangely and unexpectedly, I am getting used to this. We humans are adaptable, we can survive in concentration camps, we can survive, even be content at times, on death row. And it is these daily tasks, the routine, the bloody ordinariness of it all that helps us through. I am not quite sure what to make of it all. I do not know how life goes on, not changing, while I am looking at the clock.
Nor am I quite sure why I am so adamant in refusing further life extending chemotherapy. My attitude is not fully rational. I could argue, and do, that the chemo will make me sick, and I do not wish to spend the time that remains feeling miserable. Quality, not quantity of life as they say. But that is not quite true. I am going to get sick anyway, and I suspect, given my past experience, that I would tolerate the chemo fairly well. Another reason is that I have not yet fully, totally accepted that I will die of this disease. If I choose chemo I know that I will have resigned myself to my death. There is no hope that it will cure me, if I start I know I will be on it till close to the end, I know that in many ways it will compromise my health and the chance, however small, of a possible cure by other means. That is a big part of my decision, but it is not, I think, entirely rational. Perhaps I am in denial, looking for straws to cling to. The drive to live, even under the most adverse circumstances, is strong and irrepressible. I am not yet prepared to contemplate that final intake of breath.
I also rebel, again irrationally, at the expectation that I will follow, sheeplike, the path that modern medicine has laid out for me, a path that will inevitably lead to misery and death. You might say that I have lost my faith in a system that I have served most of my life. I now see, clearer than ever before, its deficiencies, its impotence, its arrogance and its ultimate indifference to my fate.
There is another reason too, also irrational perhaps. I feeI betrayed, I am angry. Angry at the way the cancer industry is run. Angry that after all these years they have not done better. Angry that we have been lied to, and continue to be lied to. I want no part of it anymore.
I will digress at this point. The cancer industry is huge. After all, few of us will remain untouched by this disease in one way or another. Every reasonably sized hospital has a cancer centre. These are staffed by oncologists, radiotherapists and surgeons. Staffed by nurses, pharmacists, social workers, dieticians, counsellors, administrative personnel, the list goes on. There are academic centres, research institutes, prestigious hospitals. There are professors, scientists, there are reputations to be made, accolades to be earned, research funds to be competed for. There is the pharmaceutical industry, making huge profits. And all this is world wide. All these institutions, all these individuals have a stake in this industry, to maintain it. And if you look carefully, at the bottom of it all there are the cancer patients. Some of them will live, many will die. But that is not the point of this industry. The point is the cancer industry itself.
Let us look at what has been achieved by this industry. Modern cancer treatment can be said to have started in the 1950’s, with the advent of chemotherapy, more sophisticated radiotherapy and improved surgical techniques. Mustard gas was developed by Germany in the first world war, and used in chemical warfare. It is from these inauspicious beginnings that chemotherapy evolved, after it was discovered that nitrogen mustard suppressed bone marrow activity. It was in the 1950’s that chemotherapy began to be used in the treatment of leukaemia and Hodgkin’s lymphoma. And with success – the prognosis for childhood leukaemia improved dramatically. This led to a sense of extraordinary optimism. We could make drugs that kill cancer cells. In the 1970’s Nixon declared “the war on cancer” (he also made war on Cambodia). Since then most of the research in cancer has focused on finding drugs, molecules, that will kill cancer. There have been successes. Leukemias and other cancers of the blood respond well to chemotherapy. Testicular cancer can be cured almost 100% with chemotherapy. But the results for other, solid cancers have been disappointing.
Let us look at where we stand now. After fifty odd years of research and billions of dollars there has been little improvement in cancer survival. The statistical improvement in survival is almost entirely due to prevention, screening and early diagnosis. Advanced cancer, recurrent metastatic cancer has a similar prognosis as it did fifty years ago, no better than ten percent survival. Chemotherapy can prolong life in these circumstances but it will not cure your cancer. And look at the chemotherapy that is being used. The first line chemotherapy for breast cancer consists of adriamycine and cyclophosphamide, 45 and 60 year old drugs. The first line treatment for colorectal cancer is 5-fluouracil (50 years old) and oxiplatin (30 years old). This may seem surprising. After all, barely a week goes by without some much trumpeted new advance in cancer treatment. Monoclonal antibodies that specifically target cancer cells. Nano particles, viruses, vaccines, analyzing a cancer’s genetic structure so that treatment can be tailored, it all sounds wonderful and exciting and leaves us with the illusion that major progress is being made, that a breakthrough is just around the corner. But very little has made its way into actual treatment. The greatest achievement seems to be that we can cure cancer in genetically engineered mice. And who’d be a mouse?
Let me give two examples. Avastin was developed by Genentech, a company that was started by a venture capitalist. Avastin was granted FDA approval in 2004 based on a 2003 study involving 829 patients with advanced colorectal cancer. It compared survival between patients receiving the standard Folfox regimen and those receiving Folfox with Avastin. The mean improvement in survival in the Avastin group was 2.1 months. Based on these results FDA approval was rushed through (with the help of Roche, which soon afterwards acquired Genetech). Avastin is now the second highest grossing pharmaceutical world wide. In Canada Avastin costs $40,000 a year. Side effects are severe, including hypertension, haemorrhage, impaired wound healing and bowel perforation.
Herceptin (also made by Genentech) was hailed as a major breakthrough in the treatment of advanced breast cancer. In a 2007 study it improved overall survival by 4.8 months, at a cost of $100,000 per year. Genentech made $1.3 billion from this in the US alone in 2007.
The pharmaceutical industry justifies their huge profits by claiming it is necessary to fund research and development. In fact, and they would rather you did not know this, they spend twice as much on marketing and administration as they do on research and development. Academic centres used to initiate research. That is no longer the general case. A drug company will develop a promising molecule and they pay for the trials (and who pays the piper gets to call the tune). The academic centres provide the human subjects, the drug company will own the data and write up the paper, a consulting academic (“opinion maker”) will have his name attached to it, and the FDA approves the whole enterprise. Bingo! These same professors and opinion makers are the ones who sit on the advisory committees of the FDA and have lucrative ties to the drug companies. In this incestuous world everyone eats from the same table. What could possibly be wrong with this?
I do not argue that there is a deliberate attempt to “block the cure for cancer”. I do not believe there was ever a time a group of pharmacrats, bureaucrats and academics gathered in a smoke filled back room to block the cure. But I do believe there is an element of corruption in all of this. I believe cancer is being mined for profit. And I do not necessarily believe that a research scientist, earning $40,000 a year, or an oncologist (earning rather more) are partner to this cynical enterprise. But I do think there is an extraordinary degree of tunnel vision. For many generations the focus has been on chemotherapy drugs. Generations of professors, academics and scientists have ploughed this barren furrow. That is where the money is, that is where reputations are made, that is where the funding goes. And money, ultimately is what it is all about.
I will have no part of this. I am not a statistic, not a pawn in someone else’s profit scheme, not a piece of grist in this mill. I will deal with my disease on my own terms. I am not a mouse.
I am home. My mind is in disarray, despair. This is worse, much worse than the time of my initial diagnosis. Then, at least I had reasonable hope that my cancer might be cured. But this latest scan is so catastrophic, so utterly uncompromising in its findings, there is no escaping its conclusion. This is incurable, I am going to die. And given how quickly this has occurred, in just three months, and given the extent of the recurrence, I will die in the next three to six months or so. This is not a scenario I have not played out in my mind many times. I have always known in my heart this cancer would come back. But I did not think it would happen quite so soon, I thought it would be a slower, more incremental process. I really thought I might have had a little more time.
I call my sisters in Holland. They are devastated, they don’t know what to say, and what is there to say. There are no words of comfort, not for them, not for me. I post the result of my scan on the colon club – the response is immediate, sympathy, concern, incomprehension. I send an email to Glenna.
Later that night Glenna calls me. I had hoped to tell my children the next day, after seeing my oncologist, after I had had a chance to collect myself. But Benjamin has seen the email and is beside himself. I rush over and there he is, my beautiful boy, who supported me during my surgery and chemo, who rejoiced with me when things seemed to go well, who had so much hope. No boy his age should have to carry this weight. And now this. He cries, I cry, we hug and kiss. But I have no words of comfort for him and he knows it. He stands before me, tears streaming down his face, his hands clenched into fists and cries “please don’t give up daddy, please don’t give up”. What in god’s name can I say. I promise him I won’t but I have no idea what that means. I go up to Tess’s bedroom and tell her my news. She is very quiet, does not say much. But I think I know what goes on inside her head. This is the worst part, telling your children. It would be better if I was alone in this world, unloved and uncared for, it would spare the pain of others.
I go home, I have a few drinks, I read the responses on my colon club and try to think. Tomorrow I meet with my oncologist. I know exactly what he will say: more chemotherapy, folfiri and avastin no doubt, that is the protocol and I decide I really have no choice but to do that. Surprisingly, I sleep well that night.
My appointment is in the morning. I am in the same room as before. When my oncologist comes in he immediately says “you need more chemo”. I nod. “Will it cure me” I ask. He says no, but if it works it may give you 18 months. And then he looks at my face and says well, maybe 24. I had come to this appointment prepared to accept this advice. But something in me rebels. The absence of compassion, any regret that it should have come to this angers me. A protocol is laid out before me which will make me feel miserable and which will lead to my death in 18 months, a standard management with a standard outcome, proposed by someone who knows nothing of me and who has made no attempt to get to know anything about me. I am not prepared to meekly accept this scenario so I tell him I have to think about this. He seems surprised at my response. He understands he says, but we have to move quickly. He is worried about the tumour near the aorta, suggesting it might penetrate my aorta and cause a massive internal haemorrhage. I need to think about this I say again. We discuss briefly the side effects of the treatment and then he leaves. With his hand on the doorknob he turns around and looks at my face, my breaking voice. “Do you need some psychosocial social support” he asks. I shake my head, both in answer to the question and the manner in which it is asked. The meeting lasted no more than five, maybe ten minutes.
I go home and have a coffee on my porch and try to think. As I go over the meeting with my oncologist more anger wells up in me. So that is all that they have to offer me I think, chemotherapy for what remains of my life and then death. And this is the standard treatment, and my death is an expected outcome. More than anything else it is my resentment at this coldhearted treatment, these protocols, this standard of care, presented in such an off hand manner. I will not do it I think. I will not allow myself to just fade away, to lose my hair, my weight, my face becoming gaunt, my eyes large and fearful in their sockets, my skin getting that brown, sallow look. My horizons will shrink, my daily activities will be reduced further and further and then I will die. That is not me I think, I will not live and die like a victim of cancer. I am a strong, proud man, self contained, independent and I will determine my own fate. I WILL DECIDE WHEN I DIE!
But I don’t have many options. I sit on my porch and consider my situation. There is not much to consider really, not in terms of treatment or prognosis. Nothing good lies ahead of me. One good thing is that my relationship with Glenna has improved. Things were very difficult between us when we separated but the relationship has become cordial and supportive. In spite of everything that has happened between us I am grateful for that, and it is a good example and comfort for my children. She has continued to be a much valued support ever since.
Somehow the day passes. I walk my dogs, pick up some groceries and make my supper. The surprising thing in all of this is that I feel well. My back pain is minimal, my cough has gotten better, my energy level is reasonable. I just cannot understand it, how can I be feeling this way if I am riddled with cancer? None of this seems to make any sense.
Again I sleep well. The next morning I am on my porch. It is a gorgeous summer’s day. I sip my coffee. Across the lake a mother goose is shepherding her goslings. A large turtle is sunning himself on a rock. I have received a private message from one of the colon club members. She is an internal medicine specialist in the US and was treated for rectal cancer. She tells me she had the same treatment that I had and the same thing had happened to her. A scan after her chemo showed numerous lung deposits and abdominal cancer. Her oncologists arranged a biopsy and it turned out not to be cancer but an atypical inflammatory reaction, likely chemo related. It all disappeared without treatment. She implores me to get a biopsy done. This excites me greatly. I had not considered the possibility that it might not be cancer. I correspond with her, and her story is so uncannily similar to mine that i convince myself that I might have the same thing. I send a copy of our correspondence to Glenna, she too is excited. I decide that before I make up my mind about the future I will have a biopsy done.
My oncologist is away on holiday, so on Monday morning I call my surgeon. He is kind enough to see me at lunch time. It is a surreal meeting. As I sit next to my surgeon he pulls up the images of my scan and slowly, meticulously goes through them. He does not say much. One image after the other appears on the screen. That cannot be right says my surgeon, looking at the abdominal tumours. It must be a misprint, he says finally, it should be 9 mm, not 9 cm. My heart quickens, could that really be true? He looks at the images of my lungs, again taking his time, not saying much. Nothing jumps out at me he murmurs finally. My heart leaps. Could this all be a mistake? The wrong name on the wrong file perhaps, a stupid clerical error. I can barely contain myself. For twenty minutes my surgeon slowly, carefully examines the pictures. Another set of images appears. There it is says my surgeon in a quiet voice. I ask him what he means. There is the tumour he says. But I thought you couldn’t see any I say. Oh, he says, I was looking at the scan from March….. I am deflated. Hope was the last curse out of Pandora’s box and now I know why. Even I can see the tumours in my lungs and abdomen. I tell my surgeon friend I want a biopsy confirmation. He gives a little smile and agrees. He’s just indulging me.
The biopsy is scheduled for a week later. During this time I am able, with some effort, to convince myself there is a real chance that I might not have cancer. I become increasingly frustrated with my physicians and the whole medical system. A serious and possibly deadly medical error has been narrowly avoided, I tell myself.
The biopsy is done by Dr. Armstrong, a friendly and very confident man, English I think. I have not met him before, but he tells me I delivered his sister in law’s children and she speaks very highly of me. Finally some words of kindness. I ask him if he will send a sample for cytology, which will give an instant result, so I don’t have to wait for two weeks. The biopsy itself amounts to very little. It is done through my back, a little fentanyl, some ativan, a bit of freezing and then it is all done. I am wheeled back to recovery and after an hour or so am allowed to go home. The rest of the day I clutch my phone, waiting for the call with the result. There is no call, nor the next day or the next. I decide to be patient. A belated sense of realism has come over me and I realize this is all a very long shot. Clutching at straws I think, but as long as I don’t actually see the result I can still, at times, hope. Pandora again. Finally, after ten days my secretary cannot stand it any more. “Do you want me to call for the result” she asks. Ok I say, and a few minutes later the fax comes through. The biopsy shows a poorly differentiated cancer. I sigh, it is no surprise, I cannot deny things any longer. Time for plan B.
When I returned to full time work in February one of the first people to come to my office was a pharmaceutical rep who had been coming to my office for several years, trying to persuade me to prescribe her particular brand of birth control pills. Trischa, an attractive and pleasant young woman uses all the wiles of her trade. She leans forward when I speak, there is lots of eye contact, crossing and uncrossing of legs and she wears a dress she looks ready to jump out of. This at nine in the morning, and I have to admit that after thirty years in gynaecology my susceptibility to female charms has waned. But no matter, it is always a pleasure to see her, and her little tricks are amusing. This time however, she is particularly effusive. She exults over how well I look, and although I cannot recall this with certainty I think she actually hugs me. There is a reason for this, as Trischa explains. Her brother, a young man had been diagnosed with lymphoma. He had gone through all the treatments, his cancer recurred again and again and finally he was told there was nothing more that could be done. He then used an alternative treatment and as a result he was completely cured. Naturally I was impressed. She gave me the name of the treatment and told me she could help me access this. I smiled of course. I do not believe in so called alternative medicine, I think it is cynical quackery. And, if you have cancer people come up with all sorts of weird therapies. The most absurd treatment I have come across is injecting yourself with scabies pus. I believe in the process of scientific enquiry and evidence based medicine. But to humour Trischa I wrote down the name of the treatment,
A few days later I googled the treatment. It actually made some sense to me. It involves the injection of a concoction of killed bacteria, which is meant to supercharge the immune system, and this hyper stimulated immune system is then supposed to attack the cancer. It turns out this is actually a very old treatment, and was an accepted part of mainstream medicine until it was abandoned in the 1950’s when chemotherapy came along. Thereafter it drifted out of the mainstream into the realms of alternative medicine. I researched it briefly, became intrigued and decided the treatment was not without merit. If ever I was in a situation where I had run out of options I thought, this is something I would consider doing. So…. I am there now, plan B, time to for that final roll of the dice, time to put it all on a pitch of turn and toss. My son’s words run through my head – don’t give up daddy, please don’t give up.
It is done. Six months of poisoning has ended. January 18 2012. I tell my lovely nurses I hope I will never see them again, they smile and have heard it all before. I leave the unit with a spring in my step and joy in my heart, even though I am weary to my bones. My boots crunch on the ice as I make my way to my truck. And then home. My trailer is warm, the wood stove is burning, the dogs are happy to see me. I crash on my couch with a feeling of bliss. For six months my life has been punctuated by chemo, a two week cycle, a crushing routine involving tiredness, nausea, an increasing accumulation of shooting pains in the most unexpected areas and a foul taste in my mouth that removes any joy in food and drink. But all this will now fade, I will feel normal again, get my health and energy back and pick up my life. The future beckons.
I have taken a few weeks off, in anticipation of not feeling well and needing to recover. But I feel fine. My good friend Kevin suggests a last minute cut price Caribbean all inclusive. We are in the depth of winter here and some sun would be good. So off I go, a suitcase full of books and some t-shirts, ready for some relaxation. At the airport, being a single male, I am “randomly selected” to undergo a “don’t touch my junk” scan. I ask the security guard if he sees any evidence of cancer. He can’t see any, so it is all good.
The resort is beautiful, the food is bland and the weather a little cool. But no matter, I lie on the beach, my ravaged body soaking up the sun, reading and Hobie sailing. Something happens during this time. I develop neuropathy. Neuropathy is a side effect of my chemo. It usually starts during during the treatment, in which case they will adjust the dose but in my case it does not emerge till after. A numbness in my fingers and palms of my hands, my toes and soles of my feet, shooting pains up my arms and legs, and whenever I bend my head an electrical sensation up my legs. Very odd. The worst is that the proprioception of my legs is affected. Because my body cannot sense where my legs are I have to look carefully where I put them. Going down the stairs in half light is difficult. I walk like an old man. I have difficulties with buttons. These effects are likely permanent, although it may improve over time. I still have it.
Home again, I try to resume my life. Other than the neuropathy I feel fine. I start working full time again in my office. Many of my patients know about my circumstances and seem genuinely concerned. I am touched by their interest but of course I am limited in what I can tell them. They are not here for me after all. Also I worry about gossip. I don’t get many referrals, so work is slow. This worries me, I still need to make a living, still have a family to support. A few weeks later I learn there is a rumour in the community that I am dying and have closed my practice. Why do people do this? If there is mischief to be made some people will make it, human nature I guess. But it makes me angry. I contact my colleagues, walk in clinics and so on and gradually things pick up.
My post treatment scan is booked in March. I feel well, so I am confident about the result. And sure enough, the scan shows no evidence of residual or recurrent cancer. There are a few slightly enlarged retro-peritoneal lymph nodes which the radiologist thinks are not pathological but my oncologist wants to monitor them. Never mind, I am happy with the result.
When I was diagnosed, with an advanced poorly differentiated cancer I thought I would have no more than two years to live if that. And here I am, no evidence of cancer. I am feeling optimistic, and dare believe that maybe, just maybe I have licked this thing. My son, my family are delighted.
But this is an odd place to be. While I was on chemotherapy there was an underlying sense of security. I was being treated, my cancer cells were being killed, beaten into remission. And now…..nothing. Whatever cancer cells are left (and there must be some) have free play again. Free to regroup, collect themselves and prepare for a further campaign. And there is nothing I can do, nothing to do but wait and hope and fear, and this is how it will be for years to come. I have survived the first assault of my cancer and can only wait for the next. I am in no man’s land, I don’t know if I have cancer or not.
It is not an easy place to be. In some ways being on chemo was easier, more secure. So instead of starting my normal life again I find myself further drawn into my cancer, despite my determination not to let it rule my life. I worry, I cannot sleep, I scour my colon club forum, looking for the experiences of like minded souls, the only ones who understand. There are some extraordinary individuals on this site. There is brownbagger, who has gone through numerous treatments and surgeries, and who gets on his bike and rides 50 miles two weeks after a bilateral thoracotomy. There is skifletch, a science writer who knows more about cancer and chemo than any oncologist. If you want to know if you can go scuba diving while on avastin he will give you the answer. There is Bev, a long term stage 4 survivor, the wife of an Ob/Gyn with marital issues, who has motherly advice for anyone. There is Fede, from Argentina, who has made it his business to single-handedly find a cure for his father’s cancer using his skills as a financial professional. There is CRguy, a funky 60 year old veterinary surgeon who practices acupuncture, plays jazz, does karate and writes bad poetry. There is cheesehead, my fellow dutchman on the forum who has scoured all of Europe for treatments and trials, but whose cancer keeps coming back. And the ones who die, who document the details of their demise until their messages stop. Although I have never met any of these people my heart goes out to them. I share their experiences, their hopes, their setbacks, their fears, their kindness to others. I cry with them, I am one of them.
In April something happens to me. I develop severe abdominal pains, diarrhea and cannot eat. I wonder what is going on. Is it my cancer coming back or is it just a bug. I don’t know, it seems too soon after a negative scan to be developing these symptoms. After a few days and doubling up on my metamucil symptoms settle. But I am left with a constant backache. It is not severe, a few advils will take care of it but it does not go away. I also develop a cough, especially at night. I smoke the odd cigar still, so maybe that is it. But it does not go away and wakes me up at night. I tell myself these are minor symptoms, anyone can have them and they are unlikely to be cancer related with me having had a normal scan so recently. But it won’t leave me alone, I return to my symptoms at every quiet moment, I speculate about the various causes – prostatitis, bowel related, musculoskeletal, anything but cancer. I change my mattress, nothing helps.
My dog Scout is a husky/shepherd/labrador cross. She is the most naturally intelligent dog I have ever known. For seven years I have shared my life with her and she knows me better than any creature. She knows what I will be doing before I do, she reads my moods, and where ever she is in the woods she keeps a close eye on all my doings. Being part husky she prefers to sleep outside. One night in May I wake up at 4 am to find her inside, licking my face. It is unnerving. Dogs can smell disease I know. I cannot sleep after. Since then she has taken to sleeping inside, close to me.
I have become extremely emotional, which is unlike me. A laugh will inexplicably turn into a sob and tears. A song from my youth will make me cry – the Boxer by Paul Simon at the BBC 1 sessions, Bob Dylan’s shooting star, Robin Gibb singing Holiday, Ray Davies’ Waterloo Sunset. Grieving over the life I will soon lose, self pity perhaps. But it is more than than that. My cancer has stripped away my protective shell, has opened me up to the pain in this world and especially the pain associated with cancer. A door has been opened into my innermost, a short cut between the suffering in this world and my own. I am vulnerable, fragile and draw deeper into my disease. I am losing interest in other things. Spring is here, I had planned to do some much needed work around my place. But I cannot bring myself to do anything, I just think and worry.
Whisky helps. Many years ago I did an attachment in Edinburgh. In the hotel I stayed I met an alcoholic guitar player and his long suffering wife. We became good friends and he taught me to drink whisky with a beer chaser. An excellent way to rapidly reach that place where the past can be seen with a sense of self forgiving tolerance and the future seems yet full of promise. I drink every night, too much probably, but it settles my mind and helps me sleep.
On June 21 my next scan is scheduled. I am worried, more worried than I admit to myself. The cough seems a little better, the backache no worse. Surely there cannot be much wrong. And so I have my scan. I do not wait for the result. The next day at lunch time I ask my secretary to phone for the report. When I come back from lunch she tells me they refuse to send it. But my family doctor has called several times. I know her well and like her. She was my resident and worked in my office several times.
I call her back and she answers straight away. It is not good news she says. My heart sinks. She is obviously uncomfortable with the conversation but I press her. More than thirty metastatic lesions in my lungs she says, and two large tumours in my abdomen. Widespread metastatic disease concludes the radiologist. I am reeling, I need to see this for myself. She faxes a copy to my office. And there it is, in black and white. Thirty cancer deposits in my lungs, all over, they stopped counting. Significant lymphadenopathy in my chest. Two large retro-peritoneal tumours, measuring 9 by 3 cm, next to my aorta. A death sentence, incurable. I cancel my office and go home.
I come well prepared. Thanks to my good friends at the colon club I know what to expect from my chemo. The main side effects from my cocktail, other than the usual nausea, low blood counts etc. is cold intolerance. An odd thing by the sound of it. Whenever you touch something cold, like a cold water tap, items from the fridge and so on you can expect a painful tingling sensation in your fingers, feet, mouth and throat. It is supposed to wear off before the next session. So I am prepared for this. Even though it is still the height of summer (August) I have bought gloves and a hat because I may become sensitive to sunlight. I have taken my granisetron, the top end anti nausea medication (and viciously expensive) and my steroids. A box of crackers, a bottle of flat ginger ale and of course my coffee. Sumatra Guyano, dark roast, freshly ground, black. I cannot get through the day, any day without this.
Also, as the session will last at least 4 hours, I bring Christopher Hitchens’s recently published collection of essays (a huge hero of mine, sadly diagnosed with stage 4 esophageal carcinoma – I share my fate with some excellent people – Hitchens, Steve Jobs, Robin Gibb). And of course my trusty MacBook, a $500 Ebay purchase. The boxed set of the Sopranos and a pair of head phones completes my prep.
My appointment is for 9 am. I do not have to register at the main desk, straight to the chemo therapy unit where a pleasant receptionist signs me in. The usual questions, I am given an armband and prepare to wait. The waiting area is small, light, pleasant. Little baskets of knitting wool on the table, hunting and car magazines for the men, fashion and housekeeping for the women. The genders do face death differently. From time to time a volunteer will open the door to the unit and call out a name. I crane my neck to see what lies behind the door but cannot see much.
I regard my treatments with mixed feelings. I am keen to get this over with, I believe it will help me but I am concerned about how I will tolerate it. It is a task I have set myself and am determined to get through this. But no question, it scares me. I am about to be poisoned. These drugs will attack and kill every living, replicating tissue in my body. Every cell that divides, every tissue that grows, repairs and maintains itself will be attacked by this lethal cocktail. The dose is cranked up as high as possible to increase the chances of exterminating all cancer cells and yet avoid killing the non cancerous part of me. And this assault will be repeated every two weeks, for six months. During this time the toxic effects of this treatment will accumulate. A dispiriting prospect, but I tell myself it will increase my chances of survival by 20%, odds I will happily take.
A short time later my name is called by a volunteer. I pick up my backpack and my coffee and follow her in. The unit is busy, almost every chair is occupied. I count 24 bays. I am taken to my assigned spot and sit in a very comfortable adjustable chair. The volunteer places a hot pack on my forearm. I realize only afterwards she does not know I have a port instead of a picc line. In the six months of my treatments I have not come across anyone else with a port. Thank you colon club!
This is a busy place. There are many nurses, busily attending to their patients, a large number of volunteers offering cookies, tea, blankets, pillows and I’m sure if I asked for a pina colada they could probably get me one. And of course the patients. So many of them, and so many young ones. Over the next six months I will realize how much courage there is in this room, how much endurance, how much hope. And also, I have to say this, a sheeplike resignation as we willingly let ourselves be poisoned.
After a short while the nurse assigned to me gets busy. A young woman, quite attractive with a short fashionable haircut. There is a hardness about her mouth but her eyes are kind. she seems competent and professional. I sense a degree of pity in her, an unarticulated acknowledgement that I should be here. It is not unwelcome. Over the next six months I will come to know these nurses better. My favourite one is a bluff no nonsense elderly nurse who likes hunting and ski-dooing, and who lost her daughter the year before to a malignant melanoma. She was treated in her mother’s unit. Just think. We crack the odd joke and share the tragedy of this disease.
My nurse asks me the usual questions about symptoms, fever etc. Not yet I tell her, this is my first time. She sends the order for my chemo to pharmacy and leaves. My chart is next to the computer. I pick it up and begin reading. Nothing new of course except that my oncology nurse described me as “a pleasant man”. I am childishly pleased. And then it begins. First the magnesium and calcium infusion, to reduce the risk of neuropathy. And then the real stuff. Oxiplatin, the biggest culprit in terms of side effects. It takes about two hours to infuse. I grit myself, waiting for symptoms. Nothing happens, I feel no different which encourages me enormously. No nausea, nothing. This is followed by leucovorin, which is meant to increase the effect of the 5FU, the last ingredient of my cocktail. At the end my 5FU pump is attached. I will carry this in my pocket for 48 hours, during which time it will slowly infuse its contents into my system. An amazing contraption. A polyurethane container inside of which there is a balloon filled with the 5FU. It will empty itself as a result of my body heat apparently, and you can set your watch to it. I have no idea how this works.
The whole thing takes 4-5 hours. I occupy myself watching the Sopranos with my headphones. The domestic and personal tribulations of a likeable New Jersey mafia boss and serial killer are a welcome distraction. I munch my crackers and sip my ginger ale. I am waiting for symptoms but there are none. I feel no different. And then it is all over. I can leave, and make an appointment for 48 hours later to have my pump removed. Relieved beyond words I drive home, back to my dogs and trailer. I put my hands under the cold water – yes, there is a slight tingling sensation but nothing much.
For six months this routine continues. I tolerate my treatments unusually well I think, compared to the experiences of others. The cold sensitivity gets worse, but I can still eat ice cream and drink cold beer. I stop taking my steroids, they don’t do anything and just make me wired. I reduce my granisetron and save some money. By the sixth treatment I am starting to suffer. Once the oxiplatin goes in it hits me like a truck. All I can do is lie there and let it happen. No reading, no Sopranos. I watch the soundless daytime American TV shows. All these women look alike and there is something odd about their appearance. Botox I realize. These women are botoxed to the hilt, whatever they are saying (and it is all nonsense) there is no sign of emotion on the marble smoothness of their faces. A total disconnect between facial expression and what comes out of their mouths.
Observing my fellow patients. Some obviously very ill and not likely to live much longer. The sallow skin, the hollow eyes, the clothes that were once were a fit and the look of resignation and acceptance of what lies ahead. All the more difficult to see because there is a good chance I myself may look like that sometime soon. And their poor companions, trying their best to be cheerful and supportive. But they are citizens of a different country, there is a distance between them and us that neither love nor duty can bridge. You can sense their anguish, watching their partner of 30 years fade away. And the younger ones, they are even harder to think about. We don’t talk much among ourselves, us patients. But we smile easily at each other, acknowledging our shared fate in being in a place no one wants to be.
One man irritates me enormously. He is in his late thirties and comes with his wife who is the patient. He looks like a teacher, or possibly a tax auditor. There is a smugness about him that fills me with fury. From time to time he will make some patronizing remark to another patient, and smile condescendingly. He is assiduous in looking after his wife, handing her a drink, adjusting her pillow. But whenever he does so he looks around furtively, to see if others have noticed. I hate this man, hate his health, hate that his future is secure and predictable. I feel like sneaking up behind him and whisper in his ear “psst, it’s gonna get you too you know, just you wait!”
A young woman has joined our club. She cannot be more than thirty years old. She smiles bravely at me as she walks past, manoeuvring her iv poles on the way to the washroom. I smile back and after she is past a sob comes from somewhere deep inside and my eyes fill up. This fucking disease.
Somehow, after these sessions, I manage to drive home and struggle through the snow up my driveway. I am bone tired, a tiredness that neither sleep nor rest can alleviate. I crash on my couch and tell my dogs it is a pyjama day. They seem to know anyway. There is a foul taste in my mouth, even Johnny Walker Black (the only naturopathic product I am interested in) and beer taste like cardboard. By evening time I am well enough to drink some chicken broth. Finally I sleep, twelve hours, after which I feel pretty normal again even though the 5FU pump is still pouring poison in me. The removal of this pump is a happy moment. I treat myself to a nice long shower and put fresh sheets on my bed. Bliss, good days ahead till my next treatment.
I try not to feel sorry for myself. I think of how the extraordinary generation before me was tested. My father’s time in a concentration camp. Whatever happens to me, I have never known war, never been hungry, never known insecurity. I have lived my life as I chose, no opportunities denied. Whatever lies ahead, I have been fortunate, and I have no complaints.
The six months pass quickly. I am well enough to do some part time work in my clinic. I have settled into my chemo routine. I know which days will be good and which will be bad. And I live for the day that this treatment will be finished. And then it is. January 18 2012, my last treatment. I took the full course, at the full dose. Only 25% of patients can do that. I feel well, I am strong, I feel proud and tell myself there may yet be a future for me………