On Wednesday, I noticed that my face was a little bumpy. I thought it might be all the missing whiskers trying to emerge, in honor of the springlike weather. Speaking of the weather, my mom and I have taken advantage of Chicago's extremely mild winter weather this week to take some lengthy walks.
On Thursday, the skin on my face had a texture somewhat like the surface of a bowl of oatmeal, and the top of my bald head was bumpy, and my neck was a little itchy. During the night, into Friday morning, my neck got very itchy. As did my face, and the top of my head.
This morning (Friday), everywhere that had been bumpy or lumpy or oatmealy or itchy is still that way, and the rash has spread to my lower legs. I call my doctor, who tells me to arrange a visit to the clinic to get it checked out. I get an appointment in the early afternoon.
The first step at the clinic turns out to be lab work. When I take off my fleece to expose my arm for the blood draw, I see that both arms are covered with small raised red welts.
It's itchy and unaesthetic, but I'm thinking it's probably a good thing. One manifestation of graft-vs-host disease is a skin rash, and having some GVHD correlates with better transplant outcomes. GVHD indicates a solid immune response from the graft (donor) cells. If the new immune system is attacking an organ like the skin, the thinking goes, there is a better chance that it is also attacking any lingering leukemia (graft-vs-leukemia). Too much GVHD can be very bad, and even fatal, but a skin rash like the one I have, which is relatively mild, is not life-threatening.
My appointment is with a physician's assistant (PA) who works with the Oncology team. The last time I saw her, she was performing my most recent bone marrow biopsy, and I was about to re-enter the hospital because of my bladder infection.
She checks the skin on my face, back, arms, chest, back, legs... She is confident it's GVHD. She asks about any pain (none), intestinal issues (none), eye issues (a little irritated). If there is a dermatologist available on this Friday afternoon, she would like to get a skin biopsy to get absolute confirmation that this is GVHD, but she determines that none is available, and she's quite sure anyway.
After consulting with my doctor, the PA prescribes a couple of steroid ointments, one that is too strong to use on the face, and a second that I can use on the face. She also recommends an over-the-counter antihistamine for itching, and eye drops.
By the time I get home, several hours later, I'm ready for a nap. I'm itchy, so I take an antihistamine and apply my ointments. Both ointments behave as if they have a petroleum jelly base, and applying them is like applying Vaseline on my head, face, back, and arms.
Unlike lotions, which sink in, ointments just sit grossly, greasily on the skin. If someone were trying to catch me, I would be hard to hold on to. If I were trying to take a nap, and I am, I would feel pretty disgusting, and I do. But I fall asleep anyway.
= = =
Before my appointment was over, I got preliminary lab results. The last three labs (Thursday 1/26, Monday 1/30, and today (2/3) show solid increases in the main three types of blood cells.
White blood cells: 3.6, 4.1, 5.8
Hemoglobin (standing in for red blood cells): 10.4, 10.6, 11.2
Platelets: 59, 71, 84
I think these numbers, and the onset of GVHD, are both good signs.
When talking with my doctor this morning, I learned that the consensus on the transplant team (when they met yesterday) was to take me off my immunosuppressant medication (which would probably trigger GVHD) and do another bone marrow biopsy pretty soon instead of waiting for day 100 as is typical. Now that I appear to have GVHD at the current immunosuppressant dosage, that plan may get revisited.
I hope you get some rest and that the good news continues (as well as the good weather). I thought of you today while walking around my little park. I managed to get around it six times tonight (slowly of course)...which equals about 2 miles. :)
ReplyDeleteHopefully by tomorrow I will be able to type on the laptop again and can do a post-surgery blog entry.
Hello Joe,
ReplyDeleteI'm glad to hear all the good news, and I continue to be so impressed with your ability to write in such a succinct, engaging and accessible way about the ups and downs of your battle with leukemia. Your writing is a real gift to all of us who care about you and your family. Your accounts have also opened my eyes to many of the aspects of treatment that I knew nothing about, and also helped me to appreciate many things that I might otherwise take for granted.
You have probably already heard about the great things that took place at Uni on January 23 for the "Coaches vs. cancer" fundraising and awareness-raising event. It was great to see Jan in the stands, to watch Paul having fun with the black-shirted cheering section, and to hear the moving testimonies of the researchers and cancer survivors who spoke at the school-wide assembly. Many of us were thinking of you and sending good vibes your way.
You have mentioned taking walks on Promontory Point -- Hyde Park was our corner of the world for grad school, and I can especially imagine you enjoying the sights, sounds and breezes there! Take care, and keep writing!
Janet Morford
Hey Joe,
ReplyDeleteThat rash and the grease-treatment sound a bit uncomfortable, but it is great that they are a sign of a working immune system, that is great news!
Peace,
Peter W.
Joe, you have an uncanny knack for distilling complicated medical mumbo-jumbo into its essence. I share your feelings on the lotion/cream vs. ointment controversy!
ReplyDeleteTom Suh