Monday, August 24, 2009

Another exhausting appointment

You know, about this meeting this evening with Prof. Meller...

I think that oncologists should not be the doctors who need to treat people with "benign" tumors. They see life and death situations every day, deal with bereaved loved ones, deal with people at war for their lives. Then I come in with a rare but not deadly disease involving a benign (albeit aggressively destructive) tumor, and it is hard for them to put me on their radar. I am low on their priority list. And I understand that, they shouldn't have to take care of patients like me. But here in Israel, they do. But they don't take me seriously, in a blatantly obvious way. So obvious, in fact, that they have no problem stating that they have priorities that don't include my case. But me, I have nowhere else to go for medical care for this condition. I said that, and said "I may not be fighting for my life, but I have done so before. And since then I have been trying to rebuild it. This disease is debilitating, and my quality of life is the pits because of it. I cannot work, I cannot take care of my children as I want to, I am in pain 24 hours a day, and that only is getting worse. Did I mention I cannot work? I am 41 and have careers that make me feel whole. I need this disease under control to rebuild my life as it once was. And it falls in your lap because there is no one else to take care of PVNS; it is too rare. Specialists do not exist for this disease. And after what I have been through with NF, nobody knows what to do with me anyway.
And then I was just about in tears.

In the end, it was good. I got what I went for (except the Gleevec prescription) and more. But the beginning... man, he had a preconceived notion about us, or a chip on his shoulder. Could be that Prof. Bikels told him stuff about us, could be who knows what, but he came down on us in the defensive straight out of left field. He said some things that were downright so disrespectful, and even before we said anything, practically. It was crazy. I felt beat up, and was near tears by the time he wanted to examine me.

Then he examined me. Another Gapey viewing, another doctor with a poker-faced complete attitude change. It was the "Holy _ _ _ _" poker face that I recognized from so many other Gapey viewings with countless other doctors.

After the exam, he had a complete turn around in his treatment of us. Like OK, let's take this seriously now.

Noticing that the MRI is from *January* (09), and the bone sans were from June 08, he ordered an immediate MRI. Then he put it together and saw how slowly things have been going for my care. He asked me about pain, and what has been the progression. I told him I have no pain medicine that works. I take Percocet, but it doesn't cover the pain, just helps me get by. Then he wrote out a pain control regimen. It entails an approach that is new to me; combining medicines. Combine Percocet with Etopan. I have taken Etopan before with no effects at all for the pain. He suggests that together with the Percocet is a more effective approach. These are to be taken on a regular around-the-clock schedule, not S.O.S like I am doing now with the Percocet. And together with that, he wants me to take another pill that is for protecting my liver and stomach from drug damage. Oy vey... now *there's what's missing in my life!*

About the Gleevec; he was against it outright, he has no scientific basis to consider it a viable option. He did say, however, that if, after the arthroscopy, if the disease comes back, or the result of the arthroscopy is that it failed, that nothing could be excised because of my particular anatomy, it is possible we may consider a move like this. Maybe. "Who knows", he said. At least it was not "there is no discussion of Gleevec in my office. Play with that somewhere else" (to quote my previous oncologist).

Oh, and Prof. Meller said he'd take over being the main person handling my case. He said that after making a big stink about it; something about the semantics of my word choice, who knows. (sorry, but I am not a native Israeli, cut me some slack, please) So much wasted time with his preconceived notion of us.

Bottom line:
~He is now my oncologist (for better or for worse)
~I have to get an MRI ASAP, and he told me his secretary will call me tomorrow about how to do that.
~ I have a new regimen of pain medicine to try, which I didn't even go there expecting to get.
~ tentative surgery date is Sept 13-14th, four days before Rosh Hashana. It is also when my first mammogram in my life is scheduled for, and Azriel's 4th birthday. I was supposed to do a mammogram last year because of my lymph system problems, and that the under-arm lymph nodes with me are over-worked, often slightly painful, compensating for groin ones which don't work efficiently. I put it off, but just last week made this appointment. Oh well, I'll make another one. But does that mean I'd be in the hospital (after the arthroscopy) for the New Year holiday? Very UN-GOOD. But, he said it is tentative. He said he'd try to get things together as soon as he can to coordinate this with the two surgeons.

I think in the end, he is taking me seriously. But I am bruised from the beating I took for a half hour this evening, for no apparent reason. Unless my previous oncologist said disrespectful things about us. It's out of my hands.

And now I have to go to bed. Since the birth on Friday I spent all Saturday in Bed- *all Shabbat*... in Bed. Sleeping many hours. And then again today, I got up at 4PM. Suffering from extreme exhaustion. I cannot do any more births. Not until things with my leg are better, and my energy level can take it.

My family needs all I got, I cannot spend it on working. But I love my work. I am too young to stop working. What if my PVNS will never go away? It is a realistic possibility. Meller said so today.

I have to go on, pick up the pieces from the past two years, and rebuild. Pain and all.


  1. and build you shall.


  2. It sounds like you have a wise approach to your situation and in facing the realities of, and dealing with, the medical system!


  3. it still strikes me as amazing that you have been dealing with all of these issues in Hebrew.

    semantics, (shmantics?), respect should transcend language.

    your friend and cheerleader,

    Devorah and mishpacha