Thursday, May 17, 2012

Good bye MSKCC, hello VNS hospice

Going home this morning. Yesterday was a very busy day negotiating home care. I sm choosing home-based hospice care. Visiting Nurse Service appears to be the best for me because it's quite flexible. I can be with VNS hospice and even get to PLP. I go home by ambulance today. Physically I don't need it, but it is a part of the hospital-to-hospice process. Diana and Helene are still very much in the picture, but the idea is that they are here helping me as friends and family, not as nurses. The nerve block procedure seems to have been an amazing success. Pain greatly reduced  so I need fewer narcotics. Everyone is pleased. I am eager to get moving and build up some strength. It was fun to enjoy the response to Barnard's graduation from my hospital room. The picture on page 1 of the New York Times on Tuesday with Britney's huge smile is to be remembered.

Saturday, May 12, 2012

Plan B On Monday

Increased pain sent me to the hospital in the middle of the night on Wednesday. The process of adjusting the meds always takes longer than anticipated. The best advice at this point appears to be a celiac plexus block (look it up). This could be done on Monday or Tuesday and could provide a couple of months of a non-narcotic contribution to pain relief.   Participating in Monday's ceremony is simply not possible without more effective control of the pain. So Barack will have to make do without me. A substitute had already been worked into the preliminary plans. Happy Graduation, Seniors -- 2012. We'll be watching you.

Tuesday, May 1, 2012

The next stage

Hello to my blog followers.  I apologize that my last post was brief and pretty harsh, and that it has been a while since I posted.  As you may have guessed, it has been a tough time.

I had scans last week and saw Motzer today.  The news is again not good.  While the tumors in some areas (vena cava, retroperitoneal) have not expanded, those in the pelvic area have grown. All along we have known that it is a aggressive tumor type.  fyi: these tumors are all in lymph nodes, the organs themselves are not involved, except in that the tumors can put quite severe pressure on the organs.

After my last blog, in which I said that Motzer had suggested that chemo options were pretty much exhausted, he has now suggested a new one.  When pressed,  he admits that it's efficacy is a long shot.  But he explained that many patients benefit from feeling that they are trying something.  My thinking for now is to postpone this. I am still working with the pain clinic to try to find a good balance of pain drugs, and am reluctant to introduce a new set of possible side effects. My current plan is to wait until after Barnard's graduation and perhaps try something then.  Or maybe not.

I am mostly home, and would welcome visits, if you are nearby. But please call first.  I sleep a lot.