Thursday, March 10, 2011

All You NEVER Wanted to Know About Photopheresis

This past Monday, after a month of waiting for an appointment, I met my oncologist, Dr. Shawnessy to discuss the treatment of photopheresis for my chronic lung rejection. The anticipation had been building for weeks. I had lines of questions and was so anxious for some answers, finally. I took Xanax and blood pressure medication to control my anxiety. Finally, I reached oncology and checked in. Everyone around me was sick. It was such a strange feeling, but a good one. I realized I wasn't alone. So many people are sick, some much worse than me. It gave me a less selfish view of my illness. It really could be worse.

A friendly nurse took me back and weighed me (87 pounds *sigh*) took my blood pressure which was luckily normal and took me through a revealing question and answer session.
Have you ever been diagnosed with any type of hepatitis? No
Is there any chance that you have HIV or AIDS? No
Have you ever had sex in exchange for money? NO

It was 3 pages of questions that any normal person would answer no to. I finally stopped and told her, "these are probably all no. Sorry, I'm really boring." But obviously we still had to continue. After this verbal probing, I went back to the waiting room for another half hour before the good nurse came in with some bad news: the doctor had been called for an emergency and would be back in an hour and a half.

All the weight on my shoulders, the anxiety of the unknown; I felt like I had been waiting on this 10:30 appointment forever. At this point, I was on such a high that waiting until 12:30 felt like waiting another week. I went to the lobby, curled up under my jacket, and tried to relax. Despite the unexpected delay, I wanted to be on target and ready to ask all my questions when the time came.

When I finally met the doctor, he was friendly, made eye contact, and did more listening than most doctors. It was so refreshing and comforting. We began the discussion on photopheresis. My first question, as girl who cares about her body image, was if I would need a central line. The answer, which I sort of already knew, was confirmed. Yes. I will need a central line. My biggest concern was that on April 16, two of my dearest friends are getting married. I have been given the privilege to be Rebecca's Maid of Honor. Any sort of line would not only distract people from her, but embarrass me. After discussing this with him, Dr. Shawnessy said there would be no long term danger to waiting until after the wedding to put in the line and start the treatment. A feeling of relief came over me for the first time that day.

For twice a week, I will be hooked up to a machine which will remove my white blood cells from my body, filter them into a machine, and radiate them with a UV light. The light will somewhat confuse my t-cells before they are put back into my body. These t-cells, which are now abnormal will stop recognizing my lungs as foreign tissue and stop trying to kill them off. Over time, some people will see their lung problems level off, a small percentage will see an improvement, and some people will continue to decline. We will begin doing treatments twice a week for a month and then begin to taper depending on how my pulmonary function tests come back over time.

It doesn't sound like the most promising of treatments, but it is much less harmful to one's body than high dose steroids. It would have no affect on my kidney. And side effects are minimal which include infection, feeling tired, or feeling faint.

I hate the idea of having a central line in swimsuit season. I hate being in hospitals and the fact that soon I will be a slave to them once again. But I love my family, my friends, and my sweet little dog. For them, I will fight as hard as I can till there is no fight left in me. My goal is not to think about these treatments for now. My goal is to be kind, to be generous, and be someone for people to look up to, not to feel sorry for. To not stress about what I cannot change and to just work hard to be the daughter, sister, friend, and student and I want to be, as long as I can.

My new favorite quote:
You can't wring your hands and roll up your sleeves at the same time. - Pat Schroeder

1 comment:

  1. Thanks for the explanation and the Mary humor you more than precious girlie you!!!
    Prayers continue,
    Love, Cheryl