Category Archives: cancer stage

I thought it was all going very well…

If you’ve been reading my earlier entries you’ll know that I’ve just started chemotherapy because I’ve been diagnosed with Stage 2B Lymphoma Rich Classic Hodgkins Lymphoma, which is a great long way of saying I have a cancer. You’ll know also that I was worried about side-effects, not so much hair loss as the decades have already got me to the point where Nature has been letting me see more scalp on a steady basis for a number of years, but I was particularly worried about nausea. Vomiting isn’t something anyone really enjoys is it? There’s something potentially degrading about it. Maybe that’s just because it’s something we tend to associate with too much alcohol rather than a side-effect of a medical cure. Anyway I wasn’t looking forward to the prospect of spending time on the toilet floor hugging the toilet as I understand many people undergoing chemo do, so, I’ve been very pleased, delighted even, that, after the first three or four days of simply feeling queasy, I’ve not felt nauseous at all. In fact I’ve not really had any of the side-effects which can be associated with ABVD chemotherapy. Congratulations to Lisa, my chemo nurse for setting up the right frame of mind by telling me that many people experienced no side-effects, and if she were to go through the list of them with me then I’d be more likely to experience them than otherwise, as a lot of it is “in the mind”. The last couple of days seem to have been a bit different!

Today is Wednesday. On Monday I felt fine until the early afternoon when, for no reason at all that I could identify, my mood seemed to steadily worsen and I began to feel down. Worse than that, I began to feel somewhat bellicose, and, sure enough, I was fool enough to get into an argument which should never have happened, and which was, I’ll admit down to my mood. A few lines ago I said that I began to feel down for no reason that I could identify, well the same can’t be said for my combative mood: I was certain that was down to my feeling tired, and that was a side-effect of the chemo. I was, I think, partly right in this, though that in no way excuses my belligerence. On Tuesday I was exhausted. I mean flat on my back kind of exhausted and I began to realise that what I had been previously passing off as being “tired from the chemo” was nothing in comparison. Since having the chemo my body-clock and biorhythms seem to have been knocked sideways with a sledge-hammer. I’d been trying to fool myself that I was tired from chemo and a good night’s sleep would sort me out, but, the reality is that, I was fighting against the new rhythm my body wanted to adopt. I seem to have moved onto a cycle which sees me sleep for about three hours, wake to eat something, stay awake for about three hours and then go back to sleep again. I think the longest I’ve managed to go without dropping asleep is about five and a half hours. I find it very strange, but I do seem to be adapting to it now, although I do wonder whether it will go away and let me return to a normal cycle once the chemo is done and my body starts returning to “healthy”.

Some of the consequences of this new sleep pattern should be interesting. This afternoon my wife and I have an appointment with our attorney in relation to my application for residency here in the US. If I adhere to the sleep/eat/wake cycle then I may miss a chunk of that meeting. Perhaps more significant is that we have our appointment with the US Citizenship and Immigration Services next week at the ungodly hour of 7.10 a.m. If my sleep/eat/wake cycle continues as it has been then I am likely to be asleep by 7.40! My oncologist cautioned that I should avoid groups of people so the prospect of sitting in the USCIS waiting room where, from my one visit, there seems to be a large throughput of people from all over the world bringing with them bugs and bacteria which, even if I had had some immunity previously, my immune system may well not be able to cope with now, filled both my wife and myself with some concern. Our attorney has spoken to USCIS about this and, because we made the request at an early date, it seems special arrangements can be made for my interview. My wife has the notion that we might have the interview in the car park (sorry, parking lot) which conjured up a mental picture of some kind of Monty Python sketch, with me on a bed in the car park being awakened by, perhaps, Graham Chapman, to answer questions being posed by Terry Jones with my fellow Yorkshireman, Michael Palin, manically scribbling down my answers on a piece of parchment using a quill pen to do so. All of this would be followed by a slow camera pan to John Cleese sitting behind his desk in the parking lot and saying, “And now for something completely different“.

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Filed under ABVD, Cancer, cancer stage, cancer staging, chemo, chemotherapy, Hodgkins Lymphoma, Monty Python

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