Not done yet!

Long time no talk. This is what I say to everyone when I am reaching out to say “Hi.” Well, it has been over a month with no updates so here goes.

Picture it. Peabody. 10am, March 4th, no plans, pajamas, not showered, sitting in front of Facebook playing Bejeweled. Ring, ring. Ring, ring. “Hello.”

“Hi Adam, this is Katie from Dr. Armand’s office at the Dana Farber. Can you come into today at 1:30pm?”
“Yeah, I guess. There is no way to do it on Monday.”
“Umm…I know it is short notice but this is the only day in the next two weeks both doctors can see you,” she said.
“Ok, no problem. I’ll be there”

Good news is my IV port flushed well and had a blood return. The passing out ceremony was unnecessary. More good news. My blood counts were solid. We are two for two folks, going for the trifecta. Bad news is I’ve added an extra 10lbs in one month, possible due to edema, I’m extremely fatigued and having back and chest pain. What do we do?

Before I go into greater detail, here is a brief history lesson. Back in May of 2009, my breathing became so labored due to Graph versus Host disease (GVH), that I was put on oxygen, steroids, and hospitalized for four days. And now after almost 10 months of steroid use, I was within .5mg per day of Dexamethasone from being completely taken off it for good. Now allow me to continue by update.

There are several things that could be causing my discomfort.

1. GVH. We (the doctors and I) thought it was long gone. Maybe not.
2. Adrenal Gland failure. When a body is administered steroids for as long as mine, the adrenal glands become dependent on the drugs for hormones instead of continuing to perform and produce their own.
3. Thyroid disorder. Patients who have had stem cell transplants, can be prone to thyroid disorders. According to my doctors, this will be the easiest problem to diagnosis and treat if found to be my issue.
4. We might have no clue.

Dana Farber already performed a CAT scan to rule out blood clots and potential swelling in my lungs. (My O2 levels had dropped from 94, which is low anyway, to 82 after a brief walk and six flights of stairs.) The next step is more blood and urine work for adrenal gland and thyroid issues. I will be scheduled for a full pulmonary screening if all other tests come back negative.

In the meantime, I’ve been instructed to increase my steroid intake from .5mg to 2mg daily (to combat possible GVH). I am doubling Furosemide (a diuretic used for congestive heart failure and edema) and cutting back to a low sodium (under 2400mg a day) diet.

Apparently these kinds of setbacks aren’t unusual under my circumstances. I know of two people both over three years removed from their stem cell transplants, who still haven’t returned to work, continue to be hospitalized by the common cold, and are always fatigued like myself. And although I could allow this to tear me down, I will fight on.

I have too much to live for, even though focusing on that is sometimes hard. I have good friends, loving parents, my family in St. Louis, and my amazing son. I am only 31 and plan on being here as long as there is breath in these lungs.

I want to take this opportunity to wish both my parents and nephew a “Happy Birthday!” March is a busy birthday month, 11th, 16th, and 23rd. Also if I don’t update before St. Patrick’s day, go out and have a pint on me but always remember to please be safe.

Until next time, Cheers!