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!