Sunday, August 16, 2009

How to proceed? I need a break.

Will someone else please step in and take care of these huge medical decisions so I can take care of all the day-to-day things that are not getting done? (school starts in 2 weeks!! Buy the books! [three kids this year!] Get new sneakers! Carpools need to get arranged! ACK! ...but I did accomplish giving everyone haircuts last week.) And... Azriel's tonsillectomy is this Thursday, overnight stay till Friday. I feel so overwhelmed.

OK, OK, first, what about the Gleevec that was available? I owe you an answer. :-)

We talked to the organization this morning, and the whole supply was already redistributed. They said they will put us on the list for it, and that they do get donations of Gleevec from time-to-time.

After that, I decided to write to Rav Firer. I need guidance. Real, hardcore guidance. Things seem so confusing. More so than ever before. Don't you think?

I wrote in the letter: (after shorthand reminding him of our correspondence last year, and describing my present disease and options for treatment)

Gleevec (Imatinib):
*Is this medicine appropriate for me?
*Should I go through surgery first, and then start on Gleevec if the disease returns?
*Should I go on Gleevec as soon as surgery is over?
*Should I skip surgery altogether and use Gleevec first?
*who would you recommend for me to go to for the prescription and monitoring of this medicine?

Arthroscopic synovectomy: We already know that it would not succeed in getting out all the tumor and synovium. The area is at a disadvantage because of damage from the NF. The fascia, some muscle, some ligament are gone. There are skin grafts, adhesions and scar tissue over the whole area of the hip. Surgery would be preformed by Dr. Moshe Yaniv & Dr. Udi Raht together in Ichilov hospital in early September.

*In your opinion, should I go through the surgery?

In the beginning of the letter, I wrote that I am now a patient of Dr. Bikels. Later on I said that I have an appointment with Prof. Meller, next Sunday.

*Do you suggest Prof. Meller for an oncologist for me?
*Do you have another suggestion which you think would be more suited for me?
*Are there any arthroscopic surgery hip specialists anywhere in the world who you think may be better suited (than Dr's Yaniv & Raht together) to preform this surgery?

That's pretty much it for the letter. Robert is going to translate it now (I wrote it in English; he is much better at Hebrew at the keyboard than I am- it takes me forever to do my one-finger Hebrew typing).

Then, this evening, I called my connection who got the fax straight to Rav Firer last year. Turns out she is *IN INDIA FOR A WEEK!* So I have to try to get the number myself. He has a website, I'll go there and check it out. This is where I have to keep telling myself that everything happens the way it's supposed to, for good and for bad. As hard as we try, it's ultimately out of our hands.

Lastly, Dr. Bikels called me today. He said that I shouldn't think he forgot about me, that he is planning to reschedule the surgery in early September. Dr. Raht comes back from vacation in a few days, and then there will be a meeting with the three of them (Raht, Yaniv, and Bikels), and a date will be set. Then I told him what Dr. Yaniv told us on the phone when we called a few days after the surgery was canceled. That being that in his opinion the surgery is dangerous, and it is because of my specific circumstances that make it more dangerous. I mentioned to Bikels that Dr. Yaniv mentioned the words "endangering life or limb". Bikels responded with saying that we already know this, we spoke about it, and we will take all precautions and take care of you so that you will not lose your leg. It is basically an impossibility. The possibility of another infection, in Bikels' opinion is more serious, and he worries about that, but not about losing my limb.

I didn't tell him I have a meeting with Meller next Sunday. I didn't want to get into it.

So, there will be a rescheduling of this surgery, with the two surgeons. It is a question of weather or not I will go ahead with it.

I deeply hope I can fax my letter to, and receive some answers from Rav. Firer. It is all too much for me to figure out.
Too much.

Oh, one more thing- (speaking of too much)- I still hope for a better solution to controlling my pain, I hate being addicted to Percocet. I have an appointment on Tuesday with a pain clinic person, from a private pain clinic here in Be'er Sheva. Hilary knows (& recommended) him personally, and so does Dorit. I'll have to pay privately, but we'll deal with that after the initial consult. It's better than waiting for an opening for an appointment at the HMO clinics. There is another option, though- a dear friend of mine *offered me* her appointment at the big pain clinic at Soroka that she has been waiting for (for her own pain) since November '08. I will ask my GP about if it is possible to switch appointments with someone else, and could she finagle that for me, but I will go to this private guy first and assess that before I agree to take my friend up on her offer. (her appointment isn't until Aug. 31st, so we'll see about things by then). Isn't that so amazing, though?

People are really angles at heart. OK, not all people, but so many people.
Thank you to all the angels in my life.

1 comment :

  1. Dear Sarah,
    You wrote that People are really angles at heart. I like that. Is it a meaningful slip?
    Which angles do you think best fit our hearts? Acute, obtuse, complementary, supplementary, right, vertical, corresponding, something else?
    Thinking of you.