Medical Madness or Managing One’s Illness (Part 2) [19]

8 Feb

This week I had to resort to my meager management skills for one of the thornier aspects of being ill – managing the medicine. It’s not just the medicine of course, but dealing with differing medical opinions.

My oncologist has been concerned for a long time that continued usage of Folfirinox (5FU) would lead to irreversible side effects. He put the limit at 12 treatments – this week would have been my 20th – but, for various reasons, he blew the whistle. So here’s the rub. To what do I change it? Pam and I sit in his office and listen to his alternatives; Gemcitabine (Gemzar) with Tarceva (Erlotinib); Gemcitabine with Abraxane or maybe stay with the 5FU. Who’s to decide and by what criteria? My medical expertise has come a long way in more than a year – meaning I’m not completely clueless anymore. Perhaps I’m just beginning to know how little we all seem to know about the right choice. At this point I have to take you back to the beginning.

When I was diagnosed I was told that I’d start radiotherapy and chemotherapy immediately. I thought time was of the essence and was more than grateful that the treatment would start the next day; my first session of radiotherapy and the following day a crack at chemo. In my naivety I thought this was great – what I described in a previous blog as “traveling through a medical maze in a whirlwind of medical activity”. But did I stop to ask what level of radiotherapy, what voltage I would receive? What chemo protocol would be concocted for me and why? If I had three brothers, I’d be the one who didn’t know how to ask.

My good fortune was many-fold; having my brother-in-law, who as a doctor himself, was only too ready to help, explain and advise; my chance connection to Dr Bill Isacoff[20] and Pam’s persistence to get the right answer.  Today I can add a few more notable names to my list – but does that make decision making easier?  Often, opposing opinions are on offer.

Now throw in the curve ball – how about a break in treatment while in Canada? Is a rest (from treatment) as good as a change (in treatment)? Keith can arrange a cancer treatment inCanada… that’s certainly turning things on their head. No wonder my head is spinning.  

I have no answers – I’d be happy to know how my blog readers make their own critical decisions.

[19]  Part 1 of Managing One’s Illness dealt with administrative problems (posted on 1st January)

[20]  Bill Isacoff was instrumental in changing my protocol – see my blog “Paying it Forward” from 28th November last year.

3 Responses to “Medical Madness or Managing One’s Illness (Part 2) [19]”

  1. Elaine Davidoff February 9, 2012 at 11:07 am #

    So glad you and Pam are traveling to Canada for the book launch. Good luck, go well
    Look forward to hearing about it
    Much love

  2. angiemaus February 10, 2012 at 7:17 pm #

    I guess I go with the majority together with that inexplicable ‘gut feeling’ but, whatever you decide, remember that nothing’s written in stone.
    We wish you a most wonderful trip with Pam, wrap up warm and we’ll see you in 8 short weeks.
    Love you both so much.

  3. sara February 10, 2012 at 9:09 pm #

    Asking your blog readers for an insight in to how they make their critical decisions was for me a “wow” moment – not “wow” in the great positive and exhilarating sense but “wow” in that “I get it,” illuminating sense/ Your question, simple as it may have been revealed the ultimate difference between you as a cancer fighter and me as thankfully a healthy individual. no decision that I make (giving Oren an egg or tuna sandwich for school? choosing this person or that person to be my camp director? or even choosing my life partner,) however “critical” it may seem at the time, can ever be as daunting or huge as choosing which treatment to go with. A treatment with such momentous implications.

    So what’s the bottom line
    a) I feel supremely humbled by your question
    b) you have courageously made decisions about your treatment, your diet and your mind set for the past year- it’s working, so trust your instincts and the guidance of your wonderfully supportive family and be confident that your decisions have been the right ones and you’re doing great…….
    Travel safe and return safe – enjoy Canada and see you on your return

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