Sunday, March 24, 2013

7th Anniversary of Diagnosis

On March 24, 2006, I received the worst news of my life. It had been an average Friday. Shortly after I arrived home, the phone rang. It was my doctor telling me I had leukemia.

Are you sure? I feel fine. Yes, I'm positive. A hematoligist/oncologist I recommend will call you as soon as we get off the line.

I'd gone to the doctor two days earlier complaining of a swollen finger. Lyme disease? Rheumatoid arthritis? Blood tests were done, including a CBC. It was the CBC that showed I had leukemia.

The new doctor called and in 20 minutes explained everything I needed to know right then about the disease. My husband walked in during the call and I told him I had leukemia. His face went from disbelief to shock in a second or two. I told the doctor I'd meet him the next day at the hospital.

There were plans to unmake, relatives, friends and colleagues to call. Then I had to tell my kids. Try being a scared, tearful mother putting a relatively positive spin on leukemia. They too were shocked and terrified. They didn't know what to ask or expect, just like me.

In the next 7 years, I would have 10 doses of chemo, 7 of total body radiation, 2 stem cell transplants, 75 units of blood, significant graft versus host disease wherein my donor attacks my body, 15 doses of targeted radiation to destroy a patch of leukemia on my skin, and monthly low dose anti-cancer injections. The injections are on-going for the foreseeable future.

I'm lucky to be alive, although some days don't feel like it. I have a 30% chance of surviving for 5 years post-transplant. Three and a half years down, one and a half to go.

Tuesday, March 19, 2013

I Painted a Room!

I learned how to paint when I was 16. My father owned an old motel, and the painting was endless both inside and out. This skill would be very useful in the future. In all our houses, except for the ones in Costa Rica), I did all the interior painting. I had help sometimes, but usually I just pumped up the music and rollered myself away.

What does this have to do with leukemia? For one thing, I haven't painted since my diagnosis in 2006, mainly because nothing needed painting. When we bought our house in the Catskills, someone came in to paint the bedrooms pre-furniture, before we moved in. Now that we're living here full-time, we decided to add some color to the back room that overlooks the brook. There are places for stark white rooms, but this one cried out for color.

The first problem is that, as our living room, it has the most furniture in it. Plus it's one of the smaller rooms in the house. First we had to remove the smaller items, and then stack the rest in the middle of the room. Fortunately, the ceiling didn't need painting, the hardest part of painting a room. There's actually very little wall space in the room, which has 3 windows and 3 doorways. That also meant there was a lot of taping around the natural wood frames and moulding, and a lot of painting that had to be done with a brush.

Because my ligaments and tendons are so tight due to gvh, and my muscles are weak, it's a challenge for me to walk, let alone do physical labor. Marty isn't crazy about painting, and the room didn't really need it done, so I felt I had to do my share of the work. After going to yoga Friday and Saturday, I thought, how will my thighs be able to hold me as I rose up and down to paint the trim and roller the walls? My arms are also weak. I surprised myself by working 6 hours on Sunday and 4 yesterday. It's all done except for putting everything back in the room.

A couple of weeks ago, I couldn't have withstood this kind of physical labor. Just re-upping the prednisone by 5 mg has made me feel like myself again, whoever that is.

Wednesday, March 13, 2013


I'm in NYC on a doctor tour. On Monday I saw my dermatologist. He was concerned with the path my skin was taking (basically crumbling) and how much pain I was in, especially at night. I have a new cream and a new lotion, plus a pill I take at night called Doxepin. It's too soon to see if the cream and lotion are working, but the pill puts me in la-la land so I have no trouble sleeping. That's good news.

I saw my oncologist Tuesday and he gave me a big hug. We discussed all my concerns and he offered a panoply of ideas to ameliorate my gvh skin woes, from the inside. Some of the treatments would necessitate week-long stays in NYC, which I don't want to do. Plus, I'd have to get a port because my veins are worthless. The idea of a port 3.5 years after my transplant makes me feel sad and defeated. I know it shouldn't, but it does.

We decided to take the simplest measure first, take me off Gleevec and put me back on my old friend Sirolimus aka Rapamune. I'll continue with Cellcept, another immune suppressant.