About a year ago I developed generalized itching. It was there all the time prompting me to scratch all the time. It didn’t take long for weeping, bleeding sores to develop. It was maddening and forced me out of doing many of the things I so much wanted to do. I slowed down my visits here, my contributions to Top Comments, and all of the activism that should have been part of 2016.
I sat at home doing the basics to get by, making sure I was getting to my Dermatology visits for the doctor and 3 times a week for ultraviolet light therapy. I barely noticed how much I was withering away until I noticed my pants falling off. I’ve lost 70# in just 8 months.
About 3 weeks ago I was redressing at the Dermatology Office where I just received my light treatment when I slid off the chair onto the floor and couldn’t get myself up. My initial reaction was a mixture of laughter at the advertisement “Help, I’ve fallen and I can’t get up” and horror that I couldn’t muster the strength to get my now 70# lighter ass off the damned floor.
I called for help and nurses flooded in. They contacted my primary doctor insisting he see me the next day. They told him that they had seen me growing sicker, weaker, and thin in the past months and that the fall had confirmed their suspicion that there was more than just a dermatologic problem here.
My 71 year old cousin drove me there and put me in a wheelchair because I hadn’t been walking too well. My doctor, normally expecting my sassy senior self was horrified. I got a full physical and labs with a warning to go home and stay home. He called at 8:30 PM telling me I was being admitted to the hospital — do not pass Go, do not collect $200, and definitely do not go to the ER. Something about kidney failure, toxic calcium levels, a blood count that was a third of normal, and other labs that were simply not good.
As I was wheeled upstairs to my room, I mentioned that I probably needed to go to registration. Muffled laughter accompanied the statement that it was all taken care of and that I was to go directly to my room. I saw a room down the hall where there was a gathering of white-coated doctors. Somebody must be really sick there, I mentioned.
I was wheeled into that room accompanied by all those doctors and a couple of nurses who managed to efficiently get me undressed and into one of those terrible hospital gowns. For the next 3-4 days all I remember was hands poking, prodding, and sticking needles into me and being in radiology suites for test after test.
And the, finally a face smiling, telling me everything would be all right, but asking permission to do a biopsy of very swollen lymph nodes in my abdomen. She also told me her name and that she was the oncologist. I told her that I didn’t want to feel anything, know anything or remember anything about the procedure. And I didn’t.
I had had enough of the needle sticks, pokes, and prods. They were having trouble anyway since they had sent their rookies for the initial lab draws and IV insertions and had managed to blow every single vein I had. Now a single lab draw took 4-5 attempts and another doctor suggested I allow the insertion of a Pik Port to enable IV lines to be attached, blood to be drawn, and blood to be given without a needle stick. Same deal, I said. I didn’t want to feel a thing or be awake or remember it being done. No problem, this doctor said, and he managed to do it. About a milligram of Xanax, he said later. Turns out that he was the hospitalist in charge of coordinating my care.
Nobody but the smiling oncologist had bothered to introduce themselves or tell me what was going on for 4 days. When one did, it was nice Dr. Pierce the smiling oncologist. She said they were waiting for biopsy results that were taking an unusual amount of time, but that they would make me better.
I didn’t know what day it was, if it was day or night, or much else because when I woke up from what couldn’t have been more than a cat nap, I was in some procedure room or another. It was during the last one of those that Dr. Pierce came in, again putting her face right before mine so I could see it, who told me the results:
Hodgkin's Lymphoma
She had already given me the first chemo treatment since the chemo would start killing the Hodgkin’s right away. I’d take a treatment every 2 weeks for 6 months and had a 80% chance of beating it’s ass into submission.
I’m finally home, kidneys back to normal, Magnesium and Calcium levels coming down slowly, and knowledge that all of my miseries of the last year were caused by the same thing. Current weakness and exhaustion caused by low blood counts, but I’m not too weak and tired to fight. I may be unsteady on my feet, in fear of taking another sinker to the ground, but cancer is not winning at my house.
If anyone asks about how terrible I look, I’ll just respond:
You should see the other guy.
Sorry I haven’t been around, particularly to my Top Comments colleagues who really have needed me, but I will grow stronger and really be back — hopefully soon. I’m also sorry if this thing is a mess since I’m so weak and tired, but I wanted to put the notice out. I don’t have a laptop or other device I could have used at the hospital to communicate with all of you using their very generous WiFi. Even if I had one, I wouldn’t know how to set it up for use anyway.
Anyway, that’s it for now. Hoping for better days ahead.
If you are a Health Care Worker, please identify yourself for your patients. It really, really makes a difference.