Questions, questions

Dear Friends,

I am uneasy about the biopsy of the “ground glass intrusions” in my lungs, which may be a result of the Pegasys I took for 7 months without any ameliorating results on my spleen. These intrusions are called Cryptogenic Organizing Pneumonia. Sounds worse than it is, I think. Anyway, I am scheduled for a 2nd CT-scan on Feb 7. And that's only about 2 weeks away. Would it be wise to wait to see if the intrusions are diminishing? I have been off Pegasys since July. I guess what they want to do is try to find out what it is now and then load me with steroids (prednisone probably) to get rid of them, and then have the CT-scan. One person who has experienced this whole thing told me about the outcome for her. The steroids worked. Unfortunaetly for her, the Pegasys, which caused the intrusions, was working for her p.vera, but she can no longer take it. By the way, there are others on the MPD list for whom Pegasys has worked to help them to normal lives, but their insurance refuses to continue paying for it. This is why we need health reform.

Anyway, the good news is that day by day, I am feeling more like myself because the thalidomide is getting out of my system and I am taking less prednisone. Tuesday and Wednesday have been days without much fatigue. And I know I am lucky, too, because my main symptom IS fatigue, and I have no pain as so many with cancer do. The horrendous itching that comes to some with p.vera is under control with UVB treatments and antihistamines. So I am comfortable, except for this humungus spleen.

Today Merwin and I attended the funeral service for Arnie Silverman, a professor at NCC whom I had known for about 30 years. He was a special guy, with a constant pun or quip or pointed remark about this or that political or college issue, always with a smile to soften any perceived blow. When we organized the active learning seminars for faculty, I recall that Arnie was a fetching Lady Macbeth in a kerchief in one of our impromptu acting-out activities by faculty participants to model what we wanted students to do. We were cross-disciplinary, so I led a Shakespeare session, of course. Arnie as a sociology teacher led a session on the reactions to varying reactions to illness by ethnic groups. He invited me to sit in on one of his lively classes where he had students write about their experience with illness in the family and their perception of the way ill people from their set, shall we say, reacted to the illness. The students shared their perceptions and learned to think about such issues. Many more memories of Arnie and his wife Ruth, also at NCC. Merwin and I saw them at a synagogue dinner just about 2 weeks ago, chatted briefly, and of course now regret we didn't talk at length. He had a heart condition, but I never thought he would go before me.

Otherwise today it was potato pancakes for breakfast, with the fantastic apple sauce that my friend Louise made for me--without sugar but so sweet and delicious, from a special apple without a name from a Vermont orchard. She dashed into my JCC exercise class to drop it off this morning.

I finished quite a lot of Hamlet work today also, and that always feels good. Tomorrow I will try to decide what to do about the biopsy: probably go for it, I suppose. Now I better get to sleep! I need to go to the 6:30 a.m. spin class because we are trying to keep it alive. We need 10 participants.

Love to all,
Bernice

Read more >> Options >>