Thursday, September 23, 2010

Major and Minor Irritants

I had my 2 year check-up at MDA yesterday and things did not go as I had planned. Lest you worry unnecessarily, as far as I know, I'm still cancer-free. I had a bone marrow biopsy done as part of the standard protocol, but as most of you know, the results take time to decipher. I should know the preliminaries some time next week.

As part of the 2 year check-up, a pulmonary function test was administered. I failed. The last PFT I took was six months ago and my lungs were functioning at 90%, which isn't bad considering the beating my body has taken. This go around, my lung function is 60%. The research nurse in charge of the SCT survivor study revealed my failure to me after quizzing me about having a cold or some other funk. I haven't had a cold and don't have a reason for failing the test. Chris has mentioned that I've been coughing in my sleep. All concerned think I may have GvHD of the lungs.

That's not something that I was prepared to hear.

It doesn't really get better.

My liver enzymes are up, again. Not to be outdone by my stealthy lungs, my LFTs are WAY up. Signs point to GvHD of the liver.

Wasn't ready to hear that, either.

Dr. K. ran down a list of symptoms that I should be displaying as a result of the wonky lung and liver issues. I'm asymptomatic, which is leaving the transplant team stumped. Those of you who have been along for the ride since the beginning know that I was essentially asymptomatic when I was first diagnosed with leukemia. They had to draw blood to nail it down.

The good news is that if I have GvHD, then I don't have leukemia. The bad news is that I probably have GvHD of the lungs and liver. That's bad stuff. I've spent today in a relatively foul mood because I've been hosting a little pity party.

I would have stayed in my pajamas moping around the house had it not been for part one of a two-part structures exam. That's right, I took an exam today after spending the entire day either getting poked, harvested, or on the road. I am an obstinate glutton for punishment.

The possible diagnosis of major organ GvHD is the major irritant in my life right now. I'm only irritated because I feel that my body is conspiring to throw me off of my schedule. I am determined to see this college thing through. I'm too close to finishing to shelve it right now. I'm irritated because I feel like I've started yet another life-project only to have the proverbial other shoe drop. Size 200 shoes on my size 8 head. If push comes to shove, then of course, my health comes first.

Dr. K. doubled my tacrolimus dose in the hopes that the immunosuppressive might bring my misbehaving immune system back into line. I have to see my local oncologist Monday to have blood drawn. They'll be checking my liver enzymes. If they don't come down at least a little, then I'll have to have another liver biopsy. Winner, winner, chicken dinner.

If the liver function starts to trend in the right direction with the increase in tacrolimus, then I'll have an ultrasound of the liver, instead. I'd much prefer this option.

Since I failed yesterday's PFT, then I have to have another one in the very near future, in addition to seeing a pulmonary specialist. Lucky me, I get to see the doctor that runs the PFT lab. If my lung function is once again sub-par, then I know that a lung biopsy will also be in my future. Call it a strong hunch.

If all of the poo-poo boxes get checked off, then the next step will be to start taking steroids again. I'll be taking something like 66 mg a day. That just pisses me off. If you're relatively new to my adventure, then you can see why in the archives for late 2008 through early 2009. I become a monster on steroids and have a very strong Cushing's reaction. And my bones are fragile enough and there's the whole avascular necrosis thing you have to worry about. Thanks, but I have enough on my plate.

The minor irritant in my life is that I will have to miss more classes to take care of all of this. It's not a big deal. I know this. My professors have been very understanding. I'm just irritated because this is further physical proof of how I'm not normal. It is a gnat in the eye of my existence. I will get over it. I will not let it bother me after today.

For those that like to know, here are my numbers:

WBC: 8.0 K/UL
RBC: 4.32 K/UL
PLT: 340 K/UL
ANC: 5.44 K/UL
ALC: 1.02 K/UL
AEC: 0.62 <---------This is high and is a classic indicator for GvHD or parasite infestation, take your pick.
Ferritin: 3695 NG/ML <---------High, again. This is a measure of the iron stored in your liver. Normal is 10-291 NG/ML. Transplant patients have increased ferritin levels as a result of all of the blood products we need in order to survive during treatment.
Alkaline Phosphatase: 276 IU/L <---------Normal is 38-126 IU/L
LDH: 983 IU/L <--------Arrrghhhhhh! Normal is 313-618 IU/L
Alanine Aminotransferase: 431 IU/L <--------Really? Normal is 7-56 IU/L. To know me in real life is to know that I'm cracking wise about these misbehaving measurements. Right about now, my friends Tina and Heather are cracking up about my nonsensical shenanigans.

I really am fine about everything. I just needed a day to walk around in a snit about things. I know all of these things are treatable and my amazing medical team is on top of it. I'll keep everyone informed of the next step in diagnosing the problem. Thanks for reading my rant and holding my hand.


Anonymous said...

I know your feeling. But please focus on the positive. Thinking of you.


stinkerbelle said...

I know this is a setback but one that is treatable and minor in the big scheme of things. Now be the SuperWoman that you are and go out and kick some butt!!!!

Amanda F.

Susan C said...

I'm really surprised to hear about your diminished lung capacity, especially since you must be doing a lot of walking on campus. Were you getting short of breath? Your body must be very good at adapting.

So sorry you're going through this, but your statement about leukemia and GvHD not coexisting is encouraging.

Sending a big hug.

Ronni Gordon said...

I love your tone in this post. We could have a great conversation laughing about our bodies' shenanigans.
I'm sure your sense of humor, or maybe I should call it irony, is helping you stay strong.

Those pulminary tests are the pits! Maybe you were just having a bad day, and when you re-take them you will do better.

I don't understand as many of the counts as you do. But the basics, which I do understand, sound great.

Sorry about the troubling news, but, as you said, GVHD can be a good sign too. Keep that in mind as you go through the annoying tests!

lisa adams said...

I believe pity parties are good and healthy. With cancer it seems like things are always being thrown at you. While it's good to be strong and brave and all of those things we are, not acknowledging that things SUCK sometimes and get in the way of things that healthy people can do is unrealistic.

It always took me 24-48 hours to digest the new information and make a plan. Once I had the plan, and had woven the new info into my brain, then I could move forward.

I'm so sorry for this latest kink, esp when school was just getting going. I don't want you to have to suffer with side effects from meds that might interfere with something that gives you pleasure.

Will await your next post.

PJ said...

Holy shit. GVH is good, I agree, but prednisone is bad. I just found out my cholesterol is 564 when it's usually 175. My new doc wants to taper it, and I did go down to 30 mg/day. Remain calm and keep the studies up. You'll be glad you did when these nasty issues are resolved.

Ann said...

NJer, It's really nice to hear from you. I hope you're well. I miss connecting through the old LLS boards.

Amanda, I've put on my big girl panties and am looking for my super-hero cape. Stupid immune system doesn't know who it's messing with. Of course, if it did, it wouldn't be wrecking the place. :)

Susan, I told the team that I take 2 flights of stairs every day and walk around campus. I also told them that the area I have to frequent is shrouded in a constant haze of construction dust from the major building going up next door. I cannot avoid it. My abdomen is swelling today on the liver side. It's an annoyance.

Ronni, I think we'd be cackling over the body related irony. I wish we all lived closer so we could do coffee runs, etc.

Lisa, thanks. I'm going to forge ahead until it becomes apparent that I'm just being stubborn. My GPA may take a ding this semester, but at least I'll know what I had to overcome in order to be average.

PJ, you said it! Glad to hear your doc lowered the steroid dose. It's some very nasty stuff. I don't look forward to doing the insulin and blood pressure thing again.

twentysomethinggirl said...

Sometimes you need a day (hell, a week, a month) to feel crappy. And you don't have to apologize for that! Sometimes life just sucks and you want to shake your fists at whatever discernible being who's in charge and say "Enough!" Believe me, even those of us with truly minor irritants in our life are guilty of the pity party. Indulge in some gelato, study and rest when you can and try not to let this get you down for too long. Praying for you!

Karen said...

Sorry to hear about your set back. I just got out of the hosp with GVHD liver.They slammed me right away with 120mg iv steroids and back up to 4mg prograf. My liver enzymes came down fast. There is hope! I will continue to pray for you.

Mara said...

Ann I wish you could see how brave you are. You're feeling bad about serious and scary medical issues? I get the vapors over a slight cold. Mere mortals would have gone insane going what you go through on a daily basis, or given up a long time ago. You've conquered so much and I expect you'll overcome this. But you need to forgive yourself for feeling bad sometimes!

Ann said...

Kaci, thanks. I've been comforting myself with peanut butter banana bread. I'm too busy playing catch up with school and life to be annoyed about my situation right now. It's a good thing. I noticed that my favorite gelato joint has a gelato van now. Wonder if they deliver?

Karen, wow. 120 mg of IV steroids? That's like rocket fuel. I'm happy to hear that your liver numbers came down and really happy to know that you're out of the hospital. Prayers back at you. :)

Mara, one of these days we'll meet in real life so I can give you a big hug. Wiley's a lucky man to have you in his life. I'll just keep putting one foot in front of the other until this situation is resolved.