Thursday, September 30, 2010

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, September 27, 2010

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.

Sunday, September 26, 2010

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.

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.

Monday, September 20, 2010

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. :)

Sunday, September 12, 2010

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:


Busywork

Physically going back to school has been an adjustment. No surprise there, but it's been challenging in a few ways that I hadn't fully considered when I made the decision to try my luck. I expected to be tired from the physical act of walking on campus with an over-sized bag strapped to my back. I suspected my skin would take a beating from the increased sun exposure.

The thing I didn't count on was allergies. The bulk of my classes take place in a building that was formerly dominated by the business school, but is now being transitioned over to the school of engineering. The business school is getting a brand new building next door in what was formerly a commuter parking lot. Anybody making the connection, yet?

There's major construction a few feet from where I walk five days a week. This means a constant parade of heavy equipment stirring up dust and shaking the many oak trees that line the sidewalk. ALLERGIES!

Chris tells me that I've been coughing in my sleep. I'm not surprised with all of the environmental particles I've been inhaling during the day. Let's not forget all of the chalk dust in the classrooms and whatever else lurks in the seat cushions of the stadium seats. I'm hopeful that my system will adjust and not be overwhelmed. The last thing I want is to end up in the hospital with a respiratory infection.

Classes have been going well. For those that are interested, I'm taking: management, highway construction, structures and mechanics (engineering/physics), construction business administration, engineering economy (finance). Yes, I have lost my mind. I had to take most of the technical classes this semester since they're on the critical path of major classes and segue into the next batch of critical classes. If I'd split them between this semester and the next, I would have added an extra year to school.

I have an appointment in Houston for my 2 year check-up in a few weeks. I'll have a bone marrow biopsy/aspiration and see my transplant doctor. Coincidentally, I have a management exam and an ethics paper due on the same day. The first part of a structures exam is also scheduled for the next day. As an aside, if an exam has to be scheduled to take place during two consecutive class periods, shouldn't that be an indication to the professor that there's too much material on the test? Can't forget to mention the first half of a business plan due the same week.

Chris suggested I reschedule the appointment in Houston. I should have from a logistics stand-point, but emotionally, I couldn't do it. I'd rather take a slew of make-up exams and turn the paper in early. I need to follow through with the MDA appointment for my peace of mind. The test to determine minimal residual disease takes weeks to return a result and I'd rather have the results sooner rather than later.

I'll pop in next week to let you all know I'm still lurking.

Sunday, September 5, 2010

Transplant birthdays

Monday, September 6, marks two years since I received transplant number two. I can't remember number two with the same clarity as number one. Perhaps that's due to some bizarre been-there-done-that ennui that comes with prolonged treatments. Up until that point, I'd had so many chemotherapy sessions through my CVC and injected intrathecally into my spine. There was a bout with PTLD which brought more chemo and more scans and more treatment. I've lost count of the number of times I had to go to the ER in the middle of the night because of fevers or bone pain. I couldn't tell you the number of bone marrow aspirations and biopsies I've had. Lumbar punctures? I've had more than a few.

There are scars: one on each side of my chest to commemorate the multiple CVCs, one on each bicep to mark the existence of multiple PICC lines, track marks on my arms from the myriad blood draws, a cluster of divots low on my spine from so many lumbar punctures. The backs of my hips hurt when pressed thanks to all of the bone marrow samples and bone fragments I've had removed to be tested for minimal residual disease.

I'm not alone in all of this. I've got friends who are also doing this for a second time or have done it multiple times. We have all heard some permutation of the phrase, "I'm sorry, the leukemia is back." We have all choked back some horrible miasma of grief/anger/rage/disbelief. We have all fought and continue to fight.

My life has been touched by the resilience we all share. Each of us struggles in our own way and yet every day, we resolve to put on our game faces and forge ahead for ourselves or our loved ones or just to spite the son of a bitch that is cancer.

On Monday, I will be two. I will get to do all of the things that I'd thought lost to me that horrible day in July when I was re-admitted to MDA. I will be grateful for the dust bunnies under the couch and the crazy sago palm in the front yard. I will relish the obscene amount of reading that must be done for class. I will tell Chris that I love him. I will be thankful for Dana.

So many people worked so hard to save my life, twice. Dana sacrificed to give me this second chance at life and I will be forever grateful. Chris put his life on hold to nurse me through this. So many people helped us in a plethora of ways and without all of you, we wouldn't have been able to do it.

On Monday, I plan on being as mundane as possible. I will do homework and eat leftovers. I will ignore the army of dust bunnies mounting an attack on all horizontal surfaces. I will allow the cats to bully me into giving them extra treats and I will hold my husband's hand. I will smile and be grateful for the many friends I have made, but not met because of this adventure. I will be thankful for those who are selfless enough to become members of the bone marrow registry. I will be grateful for all of you who continue to read the blog.

Because I want to.

Because I can.