What's this going to be? A blog? A diary or journal? Just something to force me to write occasionally?
And how public do I want to make this?
Last week I started this blog after finishing The Savage Detectives. I had been thinking of doing this when Ellen was still alive. She loved to write. And then she died so suddenly of an auto-immune disease three months ago. A year younger than I.
Longtime Survivor seems fitting in the title of my blog because those words describe me quite well. I've survived two different types of cancer and (just last year about this time) a broken hip. And most anyone who knows me well at all also knows that I'm a longtime survivor living with HIV. But until now I haven't yet shared this last disclosure with the public at large.
I'm a very open person about a lot of things. I've been open about being gay for almost 40 years now. Why am I more reticent about revealing my HIV status?
It's really been a defining part of my life for almost 20 years. And I think I probably sero-converted about 30 years ago
I never got tested until around the beginning of September 1993. That's when I started having night sweats, shortness of breath and unexplained weight loss. Then I started running fevers and having aches and pains from the top of my head to the tips of my toes. I finally made an appointment at Kaiser because I was finding it hard to commute to my job at Social Security and put in a full day of work. I found a wonderful doctor, Dr. Young, at Kaiser and one of the first things he did was suggest that Noel and I take the HIV test. Thankfully, Noel's test came back negative. But mine was positive and I only had about 60 T-cells.
Because of excruciating pain and constant fever, I reached the point where I could no longer go to work. I was hospitalized and on such strong pain meds that I can't remember a lot of this time. Finally a brilliant older doctor, Dr. Hollander, guessed that the pain and fevers were caused by lymphoma of the bone marrow. A bone marrow biopsy confirmed this diagnosis.
I spent a good part of that fall in the hospital. My prognosis wasn't good. Noel helped enroll me in hospice. Chemotherapy would probably only be a palliative.
My oncologist Dr. Simons was wonderful, but I had a reaction to one of the drugs in my first chemotherapy treatment and my gut shut down for a number of days. Just the night before what could have been a fatal abdominal surgery (already delayed by one day due to the surgeon having a cold) I finally started passing gas again! I was never so happy to fart in my life!
I finally got out of the hospital, sans hair and 30 pounds lighter, just before Thanksgiving. In fact, that was the day I could first eat solid food again.
At this point I have to add that Noel and my family were wonderful through all of this. Noel and I first broke the news of my illness to my sister Rita, who's a nurse practitioner. She helped break the news to the rest of the family. My parents (from Indiana) and my sister Pat (from Arizona) spent a lot of time here when I was in the hospital. And then all seven of my siblings (all from Indiana, except Pat), most of their partners and even one of my nieces were here for Thanksgiving.
As in my first blog entry, I start writing and I go off on a tangent. I also find myself writing late at night on Saturday.
With accumulated leave, I retired on a Disability Retirement in March 1994. A couple of months later I found out that my lymphoma had gone into remission and I was kicked out of hospice. But by this time, I had gotten accustomed to my retirement. My T-cell count would remain low enough for years for a diagnosis of full-blown AIDS. In fact, it still hovers in that neighborhood all these years later. Also, it would be a couple more years before reliable drug cocktails would be made available.
I had joined a support group of about a dozen men with AIDS at Kaiser. Sadly, only two of us survived to the period of the reliable drug cocktails. I truly am a fortunate longtime survivor! Noel and I lost so many friends to this disease in the 80's and the 90's.
Well, it's 2:00 a.m. I should turn in.
The other part of my blog title is Quotidien, which I usually use as my screen name. It's the French version of quotidian or daily, a pun on my last name. By putting this in my blog title, I wonder if this will cause me to write more often? We shall see.
There's always Facebook, e-mail, the weekend New York Times and now I'm simultaneously trying to read Gravity's Rainbow and Ulysses. Plus the rest of life. After 15 years in an office, I love being outdoors on nice days. And I don't have a laptop.
