Recovery

So, I had cancer. I wrote about this is my Cancer Story entry when I first began this blog, letting people know a little about me. I am NOT looking for sympathy, I just think it's important to talk about cancer and other long-term illnesses and not hide them. It helps educate others and gives them a support network if they need it. So today here's something very few people, even medical professionals, know much about, Graft vs. Host Disease.
Cancer is awful for many people. It wasn't for me. I did not feel sick before I found the lump in my neck. I was up and about through all the initial testing to "stage" the disease, and since I knew my hair was going to fall out, I had it shaved off and donated to Locks of Love.

The chemotherapy for the first part of the treatment went very well. With all of the great medications for nausea now, I never felt sick, so I was able to take myself to the treatment center every other week early in the morning for chemo. Then I went out and got a manicure or pedicure and had a nice lunch. I missed no other work than that for treatments!
18 months later, when the cancer came back, the treatment was stronger, but I still did great as far as it affecting my daily life. After my first stem-cell (bone marrow) treatment, I was back at work in 2 months. Again it came back, and this time the stem-cells came from an anonymous donor. The first time they were my own cells, but as I said, it didn't work. The transplant process was very easy, I was home the next day, I felt a little tired/weak for a few weeks, and then I started feeling normal again.
Why couldn't I go back to work?! I am a teacher, which is a very social job, so there are many people who could be carrying germs and bacteria that could kill me. I have no immune system, less than a newborn baby! All of my immunizations from childhood are gone, so I am susceptible to mumps, measles, tuberculosis, all that stuff! Besides work, I cannot go to movies, the theater, be in close crowds such as a party at someone's home. If I have to go to a store, I must wear a surgical mask and rubber gloves, and of course Purell as soon as I'm out of the store. Once I am no longer on the medications that help the bone marrow settle into my system I can have all of those immunizations again and be part of society.
The doctors told me this could take several years. All of my recovery processes in the past had been basically non-existent, so I didn't believe them! 6 months after the transplant, I was itching to return to work like crazy, but this was actually a huge turning point that I didn't realize until just about now! A "rash" started on various parts of my body. I call it rash, but it doesn't itch or burn, it's just an easy way to describe it. My face started becoming very brown, like a strange suntan, then my chest and arms.
This was the beginning of Graft vs. Host Disease, which is as serious, if not more, than any cancer. The tests had shown for several months that the cancer was gone, but after 2 reoccurances, I wasn't believing anything. The GVHD proved the cancer was gone! The new cells had no cancer to fight off! Yeah! But, these cells knew they were not in their own home, they had a new host, me, and they didn't like it. So they started fighting my body. The largest organ in the human body is the skin, so that's where you see it first. A rash, then stiffening and hardening of the skin, similar to scars, which then grow and can affect movement and mobility. Next it goes after your lungs. I have had this problem for about 5 months now, and it's way worse than having cancer was, at least for me! The hardening is in the lungs now, so they can't take in as much air as in the past.
The only cure for this is to wait; oxygen doesn't help, and cardio-vascular exercise won't change anything, either! The growth of the GVHD is held back by prednisone, that dream steroid that so many take for 10 days or so with join problems or sciatica. I have been on it for over a year, at extremely high doses. The side effects of the prednisone have joined the GVHD to basically shut down my normal life. My hands shake, my eyesight is changing, of course my face is swelled up like a Thanksgiving Day balloon, and the side effect most people don't know about is that it is weakening all my muscles. So in addition to not being able to breathe well, I can't move as confidently or as quickly as in the past. It isn't just a little breathing problem; when I walk from the house to the car, I have to sit for about a minute to recover my breath! The doctor even got me a handicapped parking permit, which I did not ask for, so I can at least do my own grocery shopping. The speed of my walk does not change how fast the breathing gets bad, but having something to hold on to like a grocery cart makes it a lot better. I can get through the grocery store and then sit in the car for a few minutes.
Because my body has weakened, everything is a big effort. Standing to make a sandwich is a milestone, when I vacuum I feel like I've won a war! I put in small pieces of exercise to keep the muscles moving, going upstairs at least twice a day, doing at least one errand a day, and in nice weather I walk in the park. It's not really a walk, I go to one bench, sit and read a little, then the next, until I've gone around twice.
I am currently trying a new treatment to possibly help get rid of the GVHD faster. It is a chemotherapy used for kidney cancer that has been noted to cure GVHD. I am the second person in the country to try it, and it's been going well for almost 3 weeks now. This is a clinical trial being run at Dana-Farber Cancer Institute in Boston. I am very fortunate to live only an hour from this major cancer center. People come from all over the country and world for treatment; I meet so many interesting people in the waiting rooms there!
Again, this post is not to garner sympathy, but to educate. Everyone has trials: unemployment, natural disasters, foreclosure, deaths of family members. Everyone will have to deal with something horrible in their lifetime. It's how you handle it that matters. Play the cards your dealt and play them well!