• Disappointing Day

    Filed under Health
    Nov 3

    I’ve heard back from Dr. Esquivel’s office and he wants me to have six more cycles of chemotherapy. I’ll be changing from the FOLFOX regimen to the FOLFIRI regimen. The difference being that instead of oxaliplatin, I’ll be getting irinotecan. I’ll still have the 46-hour 5FU infusion. Yippee. I should have fewer neurological side effects, but more diarrhea. (Yikes.)

    This is really disappointing. I was looking forward to being done with this part of the program and getting on with the whole “chemo washout” and preparation for more surgery part.

    In addition, Dr. E. would like me to have a second opinion consultation with Dr. Marshall at Georgetown. (Well, actually, the man himself or one of his associates.) Apparently, Dr. Marshall is another world-class expert kind of guy. My impression is that Dr. E. knows him and, this is really good, it turns out that my oncologist at Kaiser also knows him and did her fellowship under him. All good! My impression (optimistic, as always) is that since my situation isn’t dire enough to require immediate surgery, they want to mess around with chemo drugs a bit to see whether they can get any effect from them on the goo attached to my liver and the other little blobs of goo elsewhere.

    Anyway, so that’s the plan. Dr. Marshall is not a Kaiser Permanente doctor, so we’ll be paying his bill ourselves (and I expect it to be a whopper of a bill.) Thank goodness for savings — and for insurance that’s covered the rest of my care. And thank goodness we live in an area where there are a lot of REALLY good doctors.

    I’m considering canceling my participation in holiday concerts. I had expected to be off chemo and feeling better by December, but that’s not going to be happening. I expect to be feeling worse. (More diarrhea than I’m dealing with even now and definitely more fatigue.) So… it may turn out to be a very very low key winter for me.


4 Responses to “Disappointing Day”

  1. I was thinking about your neurological side effects yesterday – specifically the extreme sensitivity to cold. I got a new piccolo yesterday. It has plastic keys. They make a similar flute. It’s the Guo Flute – you know, the “grenadite” flutes. Well, now they make a less expensive flute – same mechanisms & all, but a cheaper plastic instead of the patented grenadite. But the keys and rods are made of grenadite. They only use metal in points that require the added stability. The only place your fingers come in contact with metal is on the G# key and you could probably ask them to put a grenadite or plastic button on that key for you. Anyway, the new flute is call New Voice. I really like my picc. It’s easy to play, has a nice mellow sound, and was quite affordable.

  2. Cool! I’ve heard of these Guo flutes and piccolos. I’ll be interested in seeing your new piccolo some time. The sensitivity to cold hasn’t been as much of a problem as I thought it would be. I’m able to warm my flute (or piccolo) up pretty quickly and play without any problems. My bigger concern now (as far as participating in any upcoming concerts) is that my digestive system isn’t working very well and I have unpredictable…um….episodes. Also, I’m having a lot of fatigue these days.

  3. Well … DAMN! As disappointing as this news is, we can only hope/assume/be assured that the doctors know what they are doing and that the longer chemo regimen will only help the “hot wash” work better.
    Sorry I’ve been remiss in posting a comment here … I’ve been busy working on a new project I’m VERY excited about! I’ve decided to add a 5K race to our Relay For Life event this summer! Since I’ve participated in half a dozen or so 5K races, I decided they can’t be ALL THAT HARD to organize! ;-) So far, so good. Plans are falling into place just like it was “meant to be” … hopefully that will continue! I’m hoping to raise a couple extra thousand dollars for the American Cancer Society with this 5K … so I’m hoping you’ll forgive me for not writing sooner!
    Hang in there. Please remember I’m always thinking about you – even if I’m not in touch. If there is ANYTHING I can do to help you, let me know.

  4. Thanks for the good vibes, Jodie! Your 5K race sounds like a great idea! Hurray for you! :-)

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