Day +324: Every picture tells a story don’t it

The day started with pain management and pallaitive care. Dr. Nina Bray asked lots of questions about quality of life and expectations, coping, etc. She  offered advice regarding exercise – do something you enjoy, walking, dancing. She asked if I’d considered acupuncture for the disguesia (taste issues). I had not but will certainly do so. It was a pleasant and informative interview overall.

In Gynecology, Dr. Stratton asked lots of questions regarding pain and dryness. After a physical exam, she determined that I have probable vaginal gvhd. She was surprised, as they generally see this in cases where patients have more widespead gvhd. She prescribed a steroid cream and dilator and wants to see me again in 4 weeks. 

Next, Mala did a bone density scan on my wrist, spine and thigh. She said I would benefit from more weight bearing exercise and plenty of calcium in my diet. She wasn’t allowed to tell me my results but I should get them tomorrow.

We had lunch at the cafeteria, leafy salad, melon and grapes, yogurt, a very small serving of tuna, and half a Klondike bar.

Then we headed back up to the 12th floor clinic for a GI consult. Dr. Travedi asked lots of questions to characterize the nature of my eating problems. My liver values are slightly elevated. They would like to do a liver ultrasound and also an endoscopy.  He said that NIH takes an aggressive approach to early diagnosis and treatment of gvhd. There is a local steroid that can be used for gut gvhd that has less adverse impact than systemic steroids. However, if enough systems are affected, the “bandaid” approach is no longer feasible to get everything under control, and a systemic steroid is used for awhile with the goal to taper off as soon as possible. They don’t know yet how much of this is applicable to me.

It will take awhile to get all my test results from the week. Every specialist I’ve seen will participate in a big meeting to discuss my results and recommendations. We’ve been impressed in general and have talked with a lot of obviously very sharp people.

We finished barely in time to go to photography. I had no idea why I was going there. Maybe a “class photo”? When I arrived at the studio, the photographer asked if I was told she would photograph me in my underwear.  No…. At least I was wearing basic black. She photographed me from every angle at a distance,  with close-ups on most parts, as well, even the soles of my feet. That’s one set of pictures I NEVER want to see! At least I can now add “underwear model” to my short list of modeling credits (I used to be a plus size fit model).

We made a quick stop at the pharmacy to pick up my gyn meds and then caught the shuttle back to the hotel by 3:30, an earlier day for a change.

Tonight we’re looking forward to meeting my cousin and her husband for Indian dinner.


  1. hi. nice to meet you online. i send you hugs. i was just at NIH today preparing to get into a clinical trial for aplastic anemia. i’ve been feeling alone with my condition, bone marrow failure, and have been trying to know people that is in the same boat as me. i hope we can share experiences and maybe share a cup of coffee at NIH.

  2. LOL Underwear model. I love it. But I am with you. I don’t think I would want to see my pictures either. Or for anyone else to see them.

    BTW How is Dory doing?

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