Category Archives: Dreams

Another change in diagnosis!!

Well the results of the second opinion by Dr Jaffe of NIH Maryland were back with my oncologist Dr Jason Tache today when my wife and I arrived for my first chemotherapy infusion. Dr Jaffe’s opinion is that the cells previously identified as +20 are actually -20, which meant that my oncologist, Dr Jason Tache, decided not to include the Rituxan in my personalised cocktail of chemotherapy drugs aimed at killing this cancer as quickly as possible. The diagnosis is now Lymphocite Rich Calssic Hodgkins Lymphoma, so I’ve gone from having a rare cancer to having the second most common – I suppose that’s good news – well probably. The less good news is that I’m now classed as stage 2B lymphoma rather than 2A. From what I’ve read and been told this isn’t really likely to make any difference to my treatment or recovery. The significance of the change of diagnosis to Lymphocite Rich Classic Hodgkins is that Rituxan wouldn’t make a proven improvement to the chemo cocktail but would have side effects, so, the logic goes, why impose potential side effects when there is unlikely to be any gain? This position means that Dr Tache could not, in conscience, use the insurer’s approval for eight treatments at a cost of around $8,000, and presumably thought that if he were to do the professional thing and notify the insurer of the change of diagnosis, then the insurer would cancel the authorisation. Do I trust Dr Tache’s diagnosis? Yes, absolutely, he strikes me as a very knowledgable and professional man. That level of trust was supported by the comment of one of the nurses that the doctors at this particular centre are world class. That’s certainly good enough for me!!

So, the chemotherapy itself went well. The nurse who worked with me was Lisa Doyle-Frank and I cannot commend her enough. She was friendly, supportive, professional, available and informative. Lisa was there the second that I showed any sign of needing her and very willing to leave paperwork to come and support me. Lisa was also really good at giving my wife information. Not to leave out the other nurses in the chemo room, I just don’t know their names – they were all very friendly to me and the other patients who pass through the room on their way to good health. There is a feeling of professional enthusiasm and good humour in the room which was tangible from the moment I walked in, and believe me, that atmosphere feels very good and is very, very reassuring. The relationships between patients and nursing staff were obviously excellent and I felt very secure.

Lisa approved of the quality of work performed by Dr Todd Schwartz, the interventional radiologist who implanted my “port” that comment was also very reassuring! After watching Not as I Pictured: Lymphoma and hearing the comments of John Kaplan about how painful the hook was as it was pushed through his skin and into his port, I was expecting the worst, but it wasn’t at all bad. Yes, I felt Lisa push it in, but I have to say I’ve had more discomfort from IVs pushed into a vein. Lisa started off by giving me a sedative just to relax me and boy did it work! All I wanted to do was sit back, close my eyes, and bring on the rest of the treatment! I wasn’t out of it by any means and I was able to join in the conversation when I wanted to, but I was very, very, very relaxed. After that came a test sample of bleomycin, just to make sure that there was no reaction. After the rest of the drugs were administered through the drip into port there had been no evident reaction and so Lisa gave me the rest of the bleomycin dose. After that we were done, a quick chat with Dr Tache to let him know that my wife had spoken with the insurer today and they had confirmed approval of the Rituxan should he at any time change his mind and decide it should be incorporated, and we were done. The advice from Dr Tache was to eat soup just in case I should suffer nausea. The advice of my wife’s pediatrican friend Henry, who has survived cancer himself, was that I should avoid eating my favourite soup! No, I don’t want to explain why he gave that particular advice!!! Anyway we decided that, before my immune system gets suppressed, we would have one last meal out so it was soup for me at Denny’s, and very enjoyable it was. During the “meal” I wasn’t sure whether or not I felt nauseous because of the chemo or because my stomach was empty after not having eaten for around 10 hours. Happily it turned out to be the latter and, so far, I’ve not been nauseous. Lisa thinks there is a good chance that I will not be nauseous at all and I want to believe Lisa is correct! Actually Lisa did say that it is often the second day after treatment that nausea hits but another lady in the chemo room said that it’s usually Saturday when she feels nauseous after a Tuesday infusion, so, I guess, it’s just a case of wait and see and hope the anti-nausea pills I have for the next three days will work and I won’t need to start using the back-up pills for the week afterwards.

Anyway it’s been a long day and midnight has just slid past while I write this, so I really ought to take the first of my pills, which may make me drowsy, and take myself of to bed – to dream perhaps!

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Filed under anti-nausea, Cancer, cancer stage, cancer staging, chemo, chemotherapy, Dr Elaine Jaffe, Dr Jason Tache, Dr Todd Schwartz, Dreams, Health Insurance, Hodgkins Lymphoma, John Kaplan, Lisa Doyle-Frank, Not as I pictured

Hamlet, Androids, Dreams and My Cancer

Yesterday I came across the blog oldermanyoungerman which touched me enormously, so much in fact that my wife asked why I was sniffing so much. Naturally, as a bluff, hale, no-nonsense Yorkshireman, I couldn’t admit to the tears which were about to gently roll down my cheeks, but the words which I’ve quoted below really got me thinking:

“Tomorrow I will lie on a table that will convey me, like an auto body part on a conveyor-belt in a factory, into a tube where I will be photographed and analysed. Not “I” but the body that I am, because the imaging will not record my terrifying thought that the cancer may still be there, nor will it pick up the sinking feeling of someday having to leave behind the man I love, nor the prayers I send up to St. Anthony and St. Michael–though I never pray that way on a normal day.

The pictures, when they are sent to the oncologist, will not show my dreams for the future, my plans for spending my days, for sitting in the sun reading, for playing with the dogs, for holding Mike tight to this too fragile heart.”

I found the images created by the blog to be as powerful as the images which may, by now, have been created by the PET scan. I’ve lain on the PET scan table where I felt more like a piece of luggage going through security at the airport and wondered, just as I’ve done at security, “Will they see something I’m unaware of? Something which appears to be a threat that I don’t know about?” Stupid thoughts at the airport where I’ve knowingly complied with all the restrictions but not on the PET scan table. Unlike the author of oldermanyoungerman I didn’t distinguish the “I” from “the body that I am”. I should have done that: I really should have done that. I accept the teachings of the Buddha and try to live according to the Dharma. In many ways, such as in this instance, I fail to achieve what I would like to achieve but there’s a teaching in there too, I think. Anyway, the reason I should have distinguished my “I” from “the body that I am” is because in Buddhism there is a meditation, which I’ve done many, many time, based on trying to find the “I”. I’ve tried to find something on-line which would explain it clearly but have been unable to do so, so, here goes. In essence the meditation involves considering your body as your I and asking yourself the question “If I lose a finger am I still my body, is my body still me and what is the missing finger? If I lose a second finger am I still my body?” and so on until the body has been thoroughly explored without at any time discovering just which part of your body contains your “I”, thus leading to the conclusion that “I” and “my body” are not the same thing at all. I’ve explained this extremely badly and can only apologise to Steve, and to Gandon “but my mum still calls me Malcolm”, for not being better able to express their valuable teachings, for which I was, and continue to be, very appreciative.

The part of oldermanyoungerman’s blog which perhaps got me thinking most was “The pictures, when they are sent to the oncologist, will not show my dreams for the future, my plans for spending my days, for sitting in the sun reading, for playing with the dogs, for holding Mike tight to this too fragile heart.” This, naturally, got me thinking of my own dreams. Of the future with my wife for which we’ve both waited for seven years while I tried to support my mum as her dementia worsened. (I think I actually heard my wife threaten to kill me before the cancer could if I was going to die and leave her behind after all this time spent waiting, but perhaps I misheard). Of my dreams of spending time with my daughters who have both given me so much support and so much to be proud of down the years and sharing, vicariously, in their future achievements. Of spending time with my grandchildren and delighting in their activities and their achievements. Of seeing my step-children go on to achieve success in their lives. Of discovering more of America – I’d love to do the Dave Gorman unchained trip across the USA – this really is possibly the funniest thing I have ever read (reading it on a trans-atlantic crossing my seat-buddy just had to know what the book was that was literally causing me to laugh out loud). Of walking once more on those fabulous Pennine Hills which have surrounded me for pretty much all my life and in which I’ve spent a fair bit of time walking, mountain biking and kayaking – if that makes me sound like Action Man you should immediately lose the image! I dreamed of sharing these pleasures with my grandkids and watching them take-off on their own. Those are my dreams! I was tempted for a moment to write “those were my dreams”, but I think I was correct the first time: they still are my dreams, however, oldermanyoungerman got me thinking how sad it must be for people who, for whatever reason, do not have dreams. Perhaps they have no dreams because they are so isolated, and this cancer thing can be very isolating even in the middle of a loving and supporting family! Perhaps they have no dreams because they know their life won’t extend that far. It was this last thought which really made me sad, and thoughtful, as I began to wonder what I would feel about losing my dreams if I were to be told, “Sorry, but you only have x months left to live”. That ‘x’ might, or might not, be enough time to go on a world tour and fit in everything I’ve ever wanted to do, but if you aren’t going to be able to remember the dream is it worth living it? In the strange and seemingly random manner in which my mind often seems to work (if work is indeed the correct verb!) my thoughts then jumped to Hamlet with his famous “to be or not to be” soliloquy which includes the words “For in that sleep of death what dreams may come“, and this made me wonder just what dreams we might take with us into, and perhaps even through, death? It also made me think of a book I’ve recently re-read by Philip K Dick, “Do Androids Dream of Electric Sheep?

I can no more answer Philip K Dick’s question than I can Hamlet asking what dreams may come in death, but I do know that my dreams are important to me, and I know that having them will help me to come through this with the help of the medical profession and my loved ones (though not necessarily in that order) and that I will go on to dream more dreams and live them too.

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Filed under Buddhism, Cancer, Death, Dreams, Meditation