Thursday, June 10, 2010

cGvHD and me

I am exhausted. Chris and I got home around 11:30 and promptly went to bed after being up since 4AM. I was up again at 1AM vomiting, and then three times after that. As for the whys and the whats, I'll get to it.

My transplant doctor, Dr. K, saw me a little after lunch, and as a bonus she was being shadowed by a fellow from Germany. I like to think the bonus was more for him, rather then me. How often is a newly minted doctor studying transplants going to get to interact with a two time transplant patient with such an engaging sense of self-deprecation? Probably more often than I suspect, but none the less, he took notes and studied the physical manifestations of GvHD I was presenting.

Dr. K. admitted that she had visions of me covered in an angry red rash, which is why she asked me to come in immediately. I don't usually complain about transplant related complications, so when I do manage to come up with something, she believes it's pretty serious. Plus, she's really good at what she does and takes a personal interest in my well-being.

When she referenced an angry red rash she was alluding to the kind of GvHD that can land a person in the ER if not treated promptly. Any GvHD needs to be managed as soon as possible, because it has a nasty habit of ballooning into seriously life-threatening conditions. A little something can turn into organ failure in a matter of days or weeks. I'm not just talking rashes, either. I've seen transplant patients with angry red rashes. It's not very nice. You can google GvHD if you'd like a visual of how bad it can be, and if you're so adventurous, I recommend doing it on an empty stomach.

I have rashes. All lower case, and no italics. They are sometimes red and sometimes flesh toned, but mostly they ITCH. I have given myself scabs from constant scratching. Constant scratching due to constant ITCHING. The sensation is always present in different areas of my body and with varying intensity. Imagine the sensation of having a grain of sand under your skin being pushed around by a fire ant that is also simultaneously biting you as it pushes this little grain of sand around. Now imagine the intensity of the sensation being tied to the frequency knob of an old-school transistor radio, in the hands of your bratty younger sibling, who can't resist playing with shiny knobs and buttons.

The rashes cover most of my upper torso and upper legs and arms. Throughout the day, raised bumps appear on my face, mostly across my nose and cheeks. The bumps start out as very intense, concentrated itching, then become small raised welts, and then proceed to become very small pustules on my face only. It makes looking in the mirror in the late afternoon an adventure. It's not acne, but classic chronic GvHD.

Dr. K. prescribed a Medrol pack and told me to start taking 0.5mg of Prograf every other day. Medrol is a steroid that I've been on before. Nasty stuff. I only have to take it for six days. Prograf is an immunosuppressant drug that keeps your immune system from rejecting a transplanted organ. In my case, it's keeping the immune system from rejecting my body. The fact that this immune system recognizes its environment as foreign is what's causing the GvHD.

While Dr. K. was looking me over, she discovered cGvHD in my mouth. I had no idea, but as soon as she asked me about it I realized that something had been off. Food that I don't normally find spicy has been really spicy this week. The burning sensation in my mouth was located in the same area as the cGvHD that Dr. K. discovered. She prescribed a steroid mouthwash for this.

Here's where I go a little off tangent. I used the steroid mouthwash for the first time last night. It is clear and smells slightly sweet. When something is labeled as a mouthwash, I automatically assume it's going to be refreshing, maybe a little minty. That's just me. Some joker gave it a grape flavor.

In the entirety of my experience of taking grape flavored medicine, I have never found said medicine to taste like grape. Grapes taste like grapes. Wine tastes like fermented grapes. Grape flavored concoctions taste like purple. Flap-doodle, you say. Colors don't have flavors, you argue. I shall hold my ground on this one issue and say grape flavored things taste like a poorly derived chemical additive formulated by tongueless sadists. It smells purple and it tastes purple. Aliens who have never tasted a grape will insist that grape flavored items taste purple. If evil has a flavor, it is grape-bubble gum flavored medicine. I'll spare you the bubble gum flavored medicine rant.

I've only used the steroid mouthwash twice and can already feel a difference. The area in my mouth where GvHD was detected doesn't feel quite as foreign today.

I started taking prograf last night. One of its side-effects is that it can cause nausea and vomiting. It hasn't done so for me in the past, but drugs are drugs and you never know when you're going to develop a side-effect. I woke up nauseated an hour or so after taking it. I blamed all of the hurling episodes on food poisoning. Chris thinks it's the prograf. I'm willing to split the difference. The next dose is slated for Friday night.

My bloodwork showed that my liver numbers are still slightly elevated. They're slightly down from last month when I had bloodwork done at my local oncologist's office. It's nothing to be alarmed by. I also know that any liver-related issues can cause extremely itchy skin. My elevated LFTs are separate from the chronic GvHD affecting my skin. The higher numbers might be very minor GvHD or could be a result of extra iron being stored in the organ as a result of all of the blood transfusions I had to have. Thanks leukemia.

Dr. K. also had my thyroid checked. My thyroid stimulating hormone level is 7.3 (I can't remember the units that follow this measurement, so I will leave the spot blank). In March, my TSH was 6. Normal is under 5. I have hypothyroidism. The doctors don't know if it would have occurred independently of the damage done to my body by chemotherapy or if it is a result of said chemotherapy. I'm now taking a prescription for it. It must be taken in the morning on and empty stomach and one of the numerous warning labels on the pill bottle advises drinking a large quantity of water with it. It doesn't specify what constitutes a large quantity of water, so I took a stab in the dark and had 16 oz. You have to wait 30 minutes before eating anything. This is going to do strange things to my morning routine. I'm all for a little variety.

I also scored a prescription for tacrolimus ointment for the rashes. It is sticky and reminiscent of Vaseline. I know a lovely tacrolimus cream exists, because I've used it many times in the past with transplant number one. I suspect the ointment variety was devised by the same joker who thought purple flavored medicine would be a hoot.

Since you shouldn't use topical tacro on the face, I got a prescription for hydrocortisone cream for that afflicted area.

So, to recap, I now take estrogen once a day, a thyroid pill once a day, a whopping dose of vitamin D once a month, swish with steroid mouthwash twice a day, take prograf every other day, apply an ointment and a cream twice a day, and will take varying doses of medrol for six days. And a partridge in a pear tree...sorry, wrong list.

I won't know how effective all of the new medicines will be for a few weeks. The tacro ointment can take up to three weeks to produce a result. I'll need a few doses of prograf before a homeopathic level accrues in my system. I don't know about the thyroid prescription, but look forward to shedding some of the weight that refuses to budge from my middle.

With all of this excitement behind me, I plan on resuming school work. Unless something else happens, this may be the only post for the rest of the week. Hope it's good enough to hold you over until next week.


twentysomethinggirl said...

I completely concur re: grape-flavored concoctions. They taste PURPLE. I feel the same disgust for banana-flavored items such as Now & Laters and Runts. Blech.

Hope the itching improves!

PJ said...

Wow, you have your hands full! I'm glad it's not serious serious but the itching must be a bitch. I hope the new meds give you relief.

Ann said...

Kacie--I feel the same way about banana-flavored items, but I love banana laffy-taffy! When I read banana runts, I gagged a little.

PJ--I can maybe, remotely sympathize with Dean on the itching, now. It is a monster, but the tacro ointment seems to be doing something.

Nancy said...

Ann, I'm sorry you are having so many complications. I know they'll resolve - it's just a matter of time. Take it easy and get rest my dear (between scrabble games, that is.) love ya, n

Betsy said...

Ann, I'm sorry you're having to deal with more GVH but hopefully the meds will get things back in check. Dean said your description of itching was right on target!!!!