Small windows of opportunity

It is odd how the mind works. Over the last few days my rigors and fevers have improved, I have had periods of undisturbed sleep and, other than a couple of humours qualms, I am deemed ‘well’ by the haematology team. And yet, when I sat to type this, tears flowed faster than the words. For no reason. I am not sad, a little tired yes, but not upset. Perhaps the previous months have caught up on me, or perhaps I just found Biffy Clyro particularly sentimental today. I don’t know. But if you can imagine your screen as a sheet from my little black book, there would be small salty droplets marking it. Not as authentic as a coffee ring, I grant you; well I’ll give you creative license to add whatever features you wish. I was hoping to provide an insightful blog post during our last limbo period, you know, an overly descriptive piece regarding my thoughts and feelings on various aspects of medicine and life. One of my sisters simply loves these entries. Unfortunately, I didn’t have the strength or energy to do such a thing so you have all been saved. For now.

Despite my relapse, my situation still fell within the BCSH guidelines. But the lines were a little blurry, the directions a little vague, and by the end you cannot help but think the document is simply shrugging at you. That being said, we were left with three treatment options. The first was to continue with Brentuximab. I was all for this, but my reasoning was purely emotional. I desperately wanted this cool ass drug to work. But it hadn’t. They scanned me to prove it. I’ve been told the unused portion will be transferred to another patient. They may have said this to ease my guilt. The second option was Gemcitabine; another chemotherapy agent. My cells, however, seem suspiciously resistant to chemotherapy, so I imagine this thought pattern was discarded rather quickly.

Seemingly, this left one final option: a double stem cell transplant. But wait, there was an outsider. An option that, travelling feverishly back from the Coromandel, I had not considered. No one, I imagine, had considered it. Around the time I relapsed a drug company began offering a new unregistered drug to refractory Hodgkin’s lymphoma patients for free. I did not meet the criteria but my consultant opted to apply anyhow. It sounds like he had to compose a novel. Upon completion of his manuscript, he returned and said he was not hopeful at all, don’t hold your breath, this will never be accepted. We forgot about it and concentrated on the original final option.

A double stem cell transplant. There are two types of stem cell transplants. Autologous, using my own stem cells, and allogenic using donor cells. The first is a way to administer high dose chemo. The second has further curative aspects. The donor cells work to eliminate the cancerous cells. Because they’re foreign cells, they can recognise that Hodgkin’s cells aren’t normal. It’s like the donor cells walk into a masquerade ball, have a quick look around and cannot believe Hero could be so foolish; that is clearly Don Pedro not Claudio, and they hope Beatrice is leading Benedict on because his disguise really isn’t that great. Then they kill them all. Yes I turned it into a tragedy. Are you lost? I think I am.  

Where was I? Right a back-to-back stem cell transplant. It was finally going ahead. Global emails had been sent; this was the consensus. First up would be the autologous with some BEAM to eliminate as much disease as possible. Then when I recover, say after two months, they would smash me with the allogenic. Hopefully, in that two month period they would find a donor for the allogenic transplant. The donor cells need genetically similar, HLA matched, as we say in the industry. Although I have two sisters, I again landed on the wrong side of statistics. Neither are suitable donors. They tell me somebody in Germany is a full match. Germany have a strong donation culture. Many people donate stem cells more than once in their life. And they donate all around the world. Even with my occupation, I was unaware of this need for donors. I cannot believe I was never on a register. Don’t worry, my stem cell harvest post is imminent, so I can implore everyone to join the donor registry. Anyway, they had two months to sort out Germany. I myself was facing six months of incapacitation, and that is not hyperbolic, it is necessity. Further disease staging was performed, namely another bone marrow, but don’t worry I asked for the gas again. Always ask for the gas.

My stem cell transplant was scheduled for Friday. We had an appointment with my consultant Wednesday for consenting and a final rundown on the procedure. I’d booked my last supper at a classy Wellington restaurant for that evening. But the consultant had a bombshell. You know before the Shakespeare tangent, the HLA tangent, the Germany tangent, there was that drug application made. The one we had all given up on. Yeah that one. Well it had been approved. My consultant explained that we were now in uncharted territory, probably somewhere off Bermuda. In a triangle. The global medical consensus (there had been more emails) was to continue with the transplants. The Wellington team felt they should continue with the transplants. My consultant was neutral, or at least portrayed neutrality, and the decision was ours to make. We had three hours.

I am not an apt enough wordsmith to convey how serious this decision was. It was the biggest of our lives, although, granted, we have had few of those lately. I am often asked if my medical background helps with my treatment. Well it obviously hasn’t helped physically. As far as understanding goes, it has definitely been beneficial when communicating with clinicians, and it has possibly helped me to rationalise my disease, although ignorance would have made relapses much easier emotionally. In this situation, my occupation and my affinity for nerding out, helped substantially. I had heard about this drug before leaving the UK, I knew it was in development, but I never expected it to be available to me. I had read about it, knew the uber cool science behind it, the potential side effects, the results from the small (very small) clinical trial, and to know all this, and to be able to absorb further information rapidly, was priceless. So, our question remained, do we opt for the conventional treatment, the one the experts are suggesting, the one with a known curative possibility; or, or, do we opt for this new drug, with little long-term data, with little data at all, a drug nobody in the haematology department has used, an experiment really.

Well, I am a scientist after all. I am always up for an experiment. And the biology behind it sounds solid. After a three hour stroll around Newtown and far too many coffees, we announced that we would try the new drug. I was so close to having that bloody stem cell transplant I’d nearly declared it to the online world. But this time I turned the bastard down. It was at least on my terms. And I still went out for my classy dinner.

         

There were further reasons that lead us to our conclusion, reasons that may seem less than rational. The drug is offered through a “Compassionate Access Scheme”. It had barely opened for Hodgkin’s patients when I re-re-relapsed, and remained open only a few weeks. I believe it has now closed. Such a narrow window, and yet I had slid through. It was almost my duty to give it go. Those who know me will be well aware of my spiritual and religious beliefs. If anyone thought there was a slim chance that I was agnostic, I am not. The more I am compelled to reflect on my mortality, the more I believe that when I die, that is it. I am not coming back as a cat, I never consider the pearly gates, nor Dante; all I imagine is nothing. Definitely an atheist, sorry guys. So I do not believe in fate, but I do believe that if an opportunity opens up, like this window, well I should probably take it. Ok, maybe I will return as a cat burglar given my apparent window obsession. Obviously all my clinical data will be collected, so I can flatter my ego with the belief that I am contributing to future medical advances. Liv, the ultimate humanitarian. I spoke of my medical background, and clinical trials, and science, and making an informed decision quickly; but it was predominately personal reasons that lead us to our final outcome. I found it quite difficult to go against medical consensus.

A new drug, a distended abdomen and who's that sexy beast in the mirror? 

The drug is in my veins now. It took two weeks of further paperwork before it was cleared, and I was too afraid to update the blog in case everything fell through. As you’ve probably gathered, plans have a tendency to change at the last minute. And I didn’t have the energy to type a retraction. I probably would have Fairfaxed out. During these two weeks my disease progressed rapidly. I suffered unresolvable nocturnal fevers resulting in terrible mornings. The drug infusion itself (one hour, once a fortnight) was an enjoyable anti-climax. Unfortunately, the following day was one of those terrible mornings. I had a pleasant mustard complexion and a yellow glow in my eyes. They admitted me, and to be honest I didn’t argue. They were concerned that these were side effects, however I knew it was all disease. That night my fevers were again unresolvable. This caused quite a stir in the morning. I informed my nurse I had a fever. She knew. She’d been watching me for five minutes. My resting heart rate was over 150. The alert team were called. About six doctors and five nurses streamed into my little cubical. All the while I was mumbling “But this is just normal morning fevers, this isn’t the drug.” I made a joke about dying. It fell flat. Not funny in a cancer ward. They pumped me full fluids, and more fluids, and more fluids. Too many fluids. Eight kilograms too many. And it all ended up in my legs. I won’t be climbing through any windows for a while. I have to lift my elephantine limbs off the bed. My underwear are two sizes too small and I spend my days with elevated feet, wondering if it is acceptable to simply forgo trousers. It is rather comical. Mainly because my fevers have eased and this is probably my biggest ailment. Oh that and my spleen! Yes you get to hear about that again. My spleen is massive and painful, as is my liver. Both are enlarged to the extent that I was used as a training abdomen. Twice. A medical student was ecstatic because one of his goals was to palpate a spleen. What can I say? I aim to please.

So this is long. But it is current. I was only discharged Monday. I know I have been deliberately coy about the drug. I am yet to receive confirmation as to whether I can name it, hence I haven’t. And the New Zealand media are currently a little sensitive about cancer treatment. I am itching to launch into the science behind it; patience Liv. Basically, it is not chemotherapy, it is immunotherapy. It works to turn my immune system against the cancerous cells. This is why I am feeling pretty positive about it all. Chemo wasn’t working, this might. And how else can I feel?