I just wrote a letter to the Jerusalem Post. It is for the woman who writes the medical column. It basically explains my medical background and why I want to try the Gleevec (Imatinib), and how she can help by printing an article about Imatinib & this rare disease called PVNS. I gave her all the links to the documented trials (in France), and also another link that Robert found just this evening about a study done in Stanford Univ. Medical Center linking this drug with PVNS. Check it out here. Here's hoping!
Tomorrow I am going to make another call to the orthopedic oncology unit at Ichilov and ask to speak with Prof. Meller. I just found out he lives down here in the South, and a good friend of mine is friends with him & his family, so it could be that the home phone number may be tried, but I'll try the office again, tomorrow. I didn't know this friend was so close with him!
I got to shul (synagogue) this morning in a wheelchair. Robert borrowed it from Yad Sarah, and it is only for times I have to get distances by walking. Bless Robert's soul- it was a hot day to be pushing me all around. But I got to a very special simcha (joyous occasion), the long-awaited Bar Mitzvah of a brilliant elderly gentleman, and I am so grateful for that opportunity.
Last night I was lying on the living room couch during dinner, stretching out a very painful leg, and watching Robert take over for me. He steps up to the plate, always. He calls it "Avodat Kodesh" (holy work) to take over the things I cannot do, at the times I cannot do them. Waking in the morning, taking care of kids when I am not able to, cooking, walking the dog, and even sleeping with one of the kids because they are scared from a bad dream. My hip hurts too much in their beds, I need my elaborate pillow set-up.
I got very scared wondering what would happen if, Gd forbid, something happened to him and he couldn't do this. I think all married people have these thoughts from time to time, but when one relies strongly on the other, it is scary to have the very real thought of "what if...". I know I'd get by, I'd get help, blah blah, but Robert, he is their father, he is my husband... it is a terrifying and forbidden thought. Please don't forget to daven (pray) for him, too. The world needs him. Our world needs him.
I don't know if this post will elicit this reaction from others, but I started crying -- I so know what you mean. I think about that all the time. The kids and I are so dependent on Moshe!
ReplyDeleteI am thinking of you and praying for you all the time!!
(the code word I had to enter for this comment is "parent" -- how psychic is that?!)
I recently heard a shiur where it was mentioned that a man who cared for his wife who was very sick with cancer had never felt more love for her and in his heart for Hashem than during that time. Through all of these trials, a tzdadik (Robert) is being forged. It is very clear that both of you are growing and your hearts are expanding all the time, and this blog is part of it. When all of this pain is behind you, BEH very VERY soon, you will have gone through a birth process into new dimensions. I'll buy your book Sare, Another Holy Woman. I have learned so much from you already just from being a part of your pain, and feeling love and support, and davening more than I would usually. BEH, the lisht through this dark tunnel will shine soon.
ReplyDeleteLots of Love,
Devorah B., NJ