Set Back

Ann complained of being "a little short of breath" one day while walking to class last week and those few words have proven to be like a small snow ball rolling down an alpine mountain side. Pressing question was "how tall is the mountain and how big will the snow ball get"?

Well that and the chest x-ray that MDA took last week, which showed a couple more fluffy infiltrates on it that weren't around on a similar one from a year ago. With that MDA went into overdrive looking into what the source of the breathlessness (dyspnea) and fluffy looking wisps are. Principally the cause was one of the following: Lymphoma, Extramedullary ALL, Aspergillosis (or some other equally unattractive fungal variant), Pneumonia, or GvHD.

One open lung lung biopsy, liver biopsy, lots of blood work and 5 trips to Houston later and we have an answer - chronic GvHD of the Lung. This is an add on to the skin, eye, mouth and liver manifestations that have already flared up.

So good news here is that in general GvHD is good. It is much (very much) preferable to Leukemia and Dr. K believes that Ann's new case is relatively mild. The treatment is Steroids, and Ann has had a fast reaction to them in the past. So the steroid pulse may only last a couple of weeks or months.

Unfortunately there is a down side. Puffiness, low immune system, anti-biotics, anti-funguals and a few other things that Ann will probably have lots more to talk about. That’s a subtle way of saying she's going to want to vent...lots and I'm not going to take that away from her.

For my part, I'm just grateful that she's still here for me to love.

The places you will go

I've finally learned something. Not all hospitals are created equally. Duh. I really already knew this, but it really hit home when I saw my numbers from Wednesday's blood work at MDA. Did I mention that I was in Houston?

The liver numbers from MDA weren't very changed from the last set taken in Houston. This means that the cell counter at my local hospital isn't quite as sensitive, because the numbers were different. Live and learn.

I saw a pulmonary specialist Wednesday morning and she didn't tell me what I wanted to hear. She showed me a few X-rays of my chest. The lungs should be nice and black in an X-ray. My lungs have a fine haze of spider webs snaking across them. The doctor didn't like what she saw. She's an expert in GvHD of the lungs and informed us that my picture didn't fit the typical profile. She wasn't ruling anything out, though. She ordered a CT scan for that day. She also ordered a bronchoscopy, which couldn't be performed until Thursday.

By the time I was finished with the liver ultrasound that my transplant doctor had already scheduled for Wednesday and checked in for the CT scan, it was after 3. I didn't get out of the scan until after 9. Chris and I had to get a hotel room, which we weren't prepared to do.

Dr. K. advised us to book the room through Friday since she wanted a liver biopsy performed as well.

I had the bronchoscopy today. I also had a last minute lung biopsy while we were at it thanks to the results of the CT scan. I feel like I've been punched in the throat from both the inside and out. Essentially, a small, flexible scope was inserted up my right nostril and into my lung. I was warned that I might wake myself because of coughing. I did. It was brutal. The team was great, though.

They'd hoped to get five tissue samples for the lung biopsy. They had to stop at two. When they were harvesting tissue, they accidentally cut into one of the lesions causing the problems in my lungs and I started bleeding. They didn't want to risk taking any more chances. As a bonus, when they were pulling up that second sample, a third little nugget came up with it.

I was sent for X-rays after this and the doctor that performed the lung biopsy sat down with me to explain my CT scan. She was lovely and very apologetic for the whole bleeding thing. It happens. In her words, there are fluffy looking infiltrates in my lungs. I saw the X-rays and the CT. There certainly are. While they were fishing around in there, they also did a lung wash so that they could do a culture. They aren't ruling anything out. I might know something by the middle of next week.

The liver biopsy couldn't be scheduled for tomorrow, so Chris and I elected to come home. The doctor warned me that the biopsied lung could collapse up to 24 hours after the procedure and that I need to take it really easy. This means no school for me tomorrow. I'm missing another exam.

I have to return to Houston for a few days to see my transplant doctor and have the liver biopsy. I'm laying low until then.

Monday Rush

I have a small break between classes, so here's a quick update for you:

The nurse from my local oncologist's office just called with my blood work results. I'll cut to the chase--LDH: 269 IU/L; ALT: 338 IU/L; Alk Phos: 171 IU/L. My LDH has improved dramatically and is once again in the normal range. I will tell you all what I've been told by countless doctors. Your LDH can be elevated for a thousand different reasons. The numbers I'm more concerned with are the ALT and Alk Phos. They've improved a little. They are still in the high range, especially the ALT. It was more than eight times the high end of normal last Wednesday. It is now six times higher than the high end of normal.

This could still mean that steroids are in my very near future. I haven't heard back from my transplant doctor in Houston yet. She may not receive the numbers until the end of the day, depending on when they check the fax machine. All I do know is that if it walks like a duck, and it quacks like a duck, it could very well be a zebra.

The only other thing that I have to report is a brief episode this morning when I found myself a little short of breath. I was walking to class and realized that I was getting winded and had to slow myself down. I ended up using the elevator instead of the stairs and had a brief coughing fit while I tried to catch my breath.

I didn't see any ducks or zebras, so I don't know what to make of it.

Cautiously Optimistic

Thursday, it became obvious to me that my liver was indeed swollen. My abdomen was a bit distended on the right side and I could feel the organ pushing against my lower rib cage. Sitting became mildly uncomfortable as it felt like something that shouldn't have been bending was getting folded. Since I had to sit through classes on Thursday and Friday, I compensated by fidgeting in my seat.

By Friday night, I could see that the swelling was starting to recede. My abdomen is still slightly swollen and I can still feel the offending organ pushing against my rib cage. As for my lungs, I hadn't noticed that my capacity was diminished in the first place and I still can't detect a difference.

Monday is going to be a marathon of a day for me. I've got two classes in the morning and a make-up exam at 10:30. As soon as I finish the test, I have to hustle across town to have blood work done. I'll have my fingers crossed that traffic will be light and the line to get stuck by a phlebotomist will be short. As soon as that's over, I'll have just enough time to get back to campus for my last class of the day. Part two of the statics exam is Tuesday, so no sleep for me.

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.

Hello

Just a quick word to let you all know that I'm still here. I'm swamped with exams and papers this week, so this could very well be the only time I pop in. Chris celebrated his birthday last Friday. :)

Cuteness

Thought I'd leave you all with something to look at when you pop in. I found some cute iron-on transfers the other day and decided to get crafty. I've customized some onesies for my nephew who's due in November. Here's my favorite one: