Tuesday, November 29, 2011

Great News on the Eye Front

The Boston Foundation for Sight called last Friday and left a message: we'd like to schedule you for a fitting. The woman I have to speak with was out sick yesterday, but I hope to speak to her today. All I can say is hallelujah.

Friends, family, doctors, and readers of this blog know that severe dry eyes have been my Achilles heel for some time now. Of all my symptoms, my eyes have prevented me from doing so many things. They also make me clumsy. And did I ever mention that they hurt?

I'll know more later but I'll be staying in Boston for about 2 weeks. I'm hoping to find an inexpensive room near the hospital, and I'm hoping that my Boston area friends might come visit me in the evening. Special shout out to New Hampshire and Rhode Island buddies.

On the doctor saga, my NY doctor never received a report from the Boston one. I think it's an administrative issue, so I named names. I don't usually like to do that, but my health is at stake. Anyway, we left it that she would contact him and they'd make a plan. But it won't be implemented until after I return from Peru in January. We're going to visit Mariel at the end of December.

My blood counts were impressive (normal) except for the reds, which remain on the low side (HG:10). I feel pretty good, though, and everyone says I look good. Today I get the stitches taken out of my cheek and hopefully get the green light for exercising again. I'll update soon.

UPDATE: The stitches came out and I'm healing "beautifully," as the doctor put it. I have an appointment in Boston for my lenses on Monday, December 5th.

Thursday, November 17, 2011

Mohs Surgery for Melanoma

Early yesterday, I walked to the surgeon's office to have a bit of my cheek sliced away. Two months ago, a tiny melanoma was found there by my dermatologist. The worst part was the lidocaine pricks, but I'm used to that.

The procedure took a few minutes; the bandaging took longer. I have an inch or more of oval shaped white bandaging under my right eye, sticking out a quarter of an inch. I have to return today for either more scraping or stitches. I'm banned from exercise of any kind for at least a week. This will be difficult.

My NY doc still hasn't gotten back to me about the second-opinion findings. I call and leave messages every day. I want to march over there and confront her. I probably won't do that though. I'll call again today and try to be patient. Grrrrr.

Thursday, November 10, 2011

Time to Get Agressive

I took the train to Boston Tuesday, where I was able to see Ronni for lunch. It was a beautiful day to sit outside and compare war stories. She escorted me to Dana-Farber and the new clinic. Ronni went off to the Museum and I waited for my blood draw and my appointment with Dr. Antin, my transplant doctor. His advice: double the prednisone, double the Cellcept, add sirolimus back in, and start Rituxin, a B-cell inhibitor. In other words, lets get aggressive with the graft vs. host disease. Let's try to control it instead of it controlling me. The prednisone will be the first to go if I improve significantly.

This is what I wanted to hear. Dr. Antin is going to send a report to my NY doctor with his recommendations. I suspect she'll go along with them.. Dr. Antin recommended a bone density scan (I had one a year ago) to see if the osteporosis has improved or not. There's another stronger med I can take for my bones. Really, I feel I have a rubber coating protecting me. I fall a lot and haven't broken anything but my spirits.

I asked Dr. Antin about altitude medication since I'll be going to Peru to visit my daughter in December. There is something I can take, but he said I can chew cocoa leaves and that will control some of the symptoms. Where do I get those? Oh, they just give them to you. You can also drink tea made from it.

Is there any doubt why I love this doctor?

Thursday, November 3, 2011

Dana-Farber Appointment

I return to my old stomping grounds next Tuesday. I never thought I'd be so excited to go to a Cancer Institute. Dana-Farber is one of the best places to go for a stem cell transplant. They do a lot of them, and do them well.

Having survived two transplants there, I am biased. The nurses and support staff are terrific, but it's my doctor who I believe is the best person to evaluate my pesky graft versus host symptoms. He's also great to talk to, about baseball, travel, fiction and of course transplant science. He's the director of the transplant unit at Dana-Farber, and it's easy to see why.

Enough fawning. I'm taking Amtrack to Boston early on Tuesday and have an appointment at the end of appointments which means I'll have a goodly amount of time to discuss and get input on my health. Maybe I can join clinical trial. Maybe my meds just need adjusting. It's a second opinion worth receiving.

I'll spend the night with friends in Providence and then take the train back on Wednesday. I can't leave Marty and Turbo alone for long because they get confused and can't find things.