Week 1

The first week of classes is behind me and I am exhausted. I know I throw that word around a lot, but once you've gone through any type of major illness, exhausted becomes a regular part of your vocabulary. Leading up to the first day of class, I was much more active than I have been in the nearly four years since this all began.

This week has challenged me on a new level. I'm now attempting a level of activity that's outside of my comfort zone. I'm attempting to play normal with the other kids.

The LSU campus is enormous and open and peppered with a confusing assortment of old buildings. As a student, you will do a lot of walking. I've been fortunate this semester. Most of my classes are confined to the engineering building. Unfortunately, I still get more direct sun than I'd like.

I was able to get a parking permit that would allow me to park closer to my classes, thanks to my very understanding BR oncologist. He's an alum and remembered what a nightmare commuter parking at LSU can be. He was worried about the sun exposure setting off my GvHD.

I've been religious about wearing three different sunblocks, but I'm still having GvHD issues. My cheeks and nose are covered in rashes and scabs on a daily basis. It itches. There's a spreading rash on my left forearm that looks a bit like a sunburn. It's sensitive to the touch and feels very much like a sunburn. My feet, hands, and calves have been cramping off and on throughout each day. It makes concentrating in class something of a game. At home, I can get up and walk around to stretch the muscles. I can't do the same during a lecture.

As far as I'm concerned, these are all very minor nuisances in the big scheme of things. If a little discomfort is the price I have to pay for normalcy, then bring it on. I'm happy to be able to do it.

I've already got several assignments due next week, so blogging is going to be tough. I'm going to do my best to stick to my once-a-week promise. If I get a little behind, don't worry. Sometimes, no news really is good news.

YIPPPEEEE!

The grade for my marketing class just posted: A

Thank you, Dr. Karam!!!

I just had to post since I'm sure Chris is getting sick of me running around the house with my arms in the air, yelling, "YAY!"

For the record: He's proud of me and wouldn't mind if I jogged down the street doing the same thing. :)

Another first

I have survived my first day of classes and am stealing a few moments to update the blog. It's just as I remembered it, except the familiar faces from what would have been my graduating class have been replaced with a whole new cast of characters. I was pleasantly surprised to find that I had two classes with two professors from my last semester at LSU. One of them greeted me by name as he handed me a syllabus. It was a lovely, normal moment.

I have two classes tomorrow and if they're at all like the three that I had today, I know that I will have a tremendous amount of reading ahead of me. I've already had to speak to two of my instructors regarding schedule conflicts. It seems that my two year MDA check-up coincides with an exam and an ethics paper. It will all work out, so I'm not going to waste time worrying about it.

Now, if you all will excuse me, I have a few books to crack.

Where do I begin?

I have taken the final exam of my marketing class and am happy to be done. In January, when I first decided to attempt this undertaking, I had legitimate concerns regarding my ability. I'd had Hyper C-Vad, modified Hyper C-Vad with L-Asperiganase, Rituxan, intrathecal chemotherapy, and two courses of consolidation chemotherapy. I have had my immune system burned out of my marrow twice. I have had so many drugs and combinations of toxins that I marvel at my ability to function some days.

My doctors warned me that I would have cognitive issues. I would need to learn how to process information differently. I was warned that I would have issues handling stress.

All true.

I've discovered that my academic effort must be tripled in order for me to do an acceptable level of work. By acceptable, I mean "passing". I used to be the kid that could breeze through school with a minimum of effort. Not so much anymore.

I've learned that I need to rely on flashcards and repetitive drills. Chris plays an integral role in all of this. He holds my hand and encourages me to approach problems from multiple angles. It's been largely due to his encouragement that I managed to get through this.

I will begin physically attending classes at LSU on Monday. I'm taking five classes. The very thought of it makes my heart race. The anxiety is building.

Checking in

No changes here, which is a good thing. I couldn't let the blog slide until 8/20. It didn't feel right. I've handed in the final assignment for my marketing class and am currently reviewing for the last exam. I start physically attending classes two weeks from Monday, and the butterflies are fluttering. I'll check in once I've taken the last marketing test.

Thoughts on steps without me

I admit my blogging has been exiguous. Mostly, this is because I've been working quite hard at my job now that I've been transferred to the corporate office, but also because there is less of the sort of thing going on that lead to the creation of this blog. That's a good thing, and it has led to things like Ann's solo trip to Houston.

Ann's trip to MDA without me has caused a breakthrough in my thinking. Each journey there is like a big-event and is proceeded by (for me at least) a week's worth of humorless worry and crushing anxiety. So much depends on those trips that I have long given up on the idea of routine exams and I made sure that I was there each time so I could hold her hand.

Ann and I spent every day on the 8th floor of the Clark Clinic at MDA for what seemed like years. Without too much difficulty I can remember with a voluminous mix of despair and dread everything we fought so hard to overcome while there: induction, blindness, wheelchairs, having no home, desperate donor searches, insurance denials, transplant, relapse and transplant again.

I could have taken vacation or sick time to go with her, but I didn't. I could have begged off of my reports and deadlines until the end of the week, but I didn't. I don't think I would have lost my job. So why did I let her go alone this time? Why did I allow her to go and face the beast without even moral support?

My sneaking suspicion is because I needed to, and she needed me to let go just as badly. Which is not to say that I don't feel one iota less guilty about not being there.

Life pushes toward its normal equilibrium in the absence of a crisis. Feeling scared, anxious, or guilty are just bi-products of that process and we can't control it. Ann needed to be able to do something big without support. I needed to focus on work and put my anxiety away. And she needed me to do this as well.

Driving solo

I had a GvHD check-up in Houston yesterday, and I think my transplant doc's exclamation, "Has it already been a month?" pretty much sums it all up. I have been in a doctor's office every two weeks like clockwork. It's either been for GvHD or some pedestrian crud.

Taking 0.5mg of tacrolimus twice a day seems to have done the trick. My GvHD is back in line with where it was before the flare-up: just enough to be very mildly irritating, but not life-threatening. I still need to use the steroid mouth-rinse, because the tissue is still sensitive. I get a blister on the left side off and on.

Chris was swamped at work and so I made the trek alone. The drive was pleasant mostly thanks to my sweet hubbie's thoughtfulness. He assembled a music play list containing my favorite band and gassed up the car the night before.

Five hours of driving, four hours of MDA, and then a little over five hours of driving home. Exhausting.

Here are the numbers for those that are interested:

WBC: 7.9 K/UL

RBC: 4.07 M/UL (WOO-HOO!)

HGB: 12.8 G/DL

PLT: 362 K/UL

ANC: 5.34 K/UL

ALC: 1.28 K/UL

AMC: 0.92 K/UL

AEC: 0.29 K/UL

My tacro level is less than the measurable amount, which is fine, because it's keeping things in line. Dr. K. ordered an immunity panel which returned in the low end of normal, even on tacrolimus. This is a good thing and shows that the killer T-cells are theoretically capable of doing the job, so to speak.

As for me, I had a few curve-balls to throw at Dr. K. The first on being the laundry list of vaccinations LSU wants me to have before they'll allow me to attend classes. Dr. K. had a letter drafted explaining why I can't have them and explained that due to my compromised immunity, there is a very large chance that getting these vaccines would end in a reactivation of these viruses which would lead to some seriously bad stuff. The second requirement LSU has for me is a PPD test to show whether I've ever come into contact with TB. They want this because: A) I was born in Asia, B) I have had leukemia, and C) I take immunosuppressants. MDA doesn't normally do this test in-house. It's a skin test that must be read 48 hours after giving it.

Since it wasn't a practical proposition to have it done in Houston, I'm going to see if my local oncologist can do it. If he can't, I'll find someone. I also need to see about getting a temporary parking pass that allows me to park closer to classes. I spent 15 minutes in the sun walking from my car to a test on campus and came away with my forehead, nose, and cheeks covered in small blisters, scabs, and pustules. It itches and is uncomfortable. I was wearing a dedicated sunblock and two other products containing sunscreen. I don't know what doing that everyday would do to me.

My final curve-ball for Dr. K. came in the form of a question: Have you ever had or heard of a female patient post transplant being able to carry a pregnancy to term? Due to the excessive chemo through two transplants, I am sterile. I've been seeing a lot of sensational new articles or documentaries about women in their sixties and seventies being able to conceive and give birth thanks to donor eggs and in-vitro fertilization. If they can do it, why can't I?

Dr. K. explained that she's never had a patient post-transplant do it, but that there is plenty of data that shows that it's possible and does happen. She also explained that she can't see any reason why I couldn't do the same with a donor egg. She cautioned me to wait until I was cancer free for five years. The magical five year mark is when the chance of relapse plateaus. I understand her caution and I also understand that I'll have to see a fertility doctor in order to determine whether this little scheme is even feasible. I'll put it on the back burner while I concentrate on finishing school.

As for that, I have three more lessons to finish and one more test to take in order to be done with my marketing class. I'm up against a hard deadline, so things will be quiet here until the last week of August. If something is wrong, I will post. If something deserves celebration, I will post. If you don't hear from me until 8/21, then know everything is status quo.