Saturday, July 24, 2010

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.

Thursday, July 22, 2010

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.

Sunday, July 11, 2010

Home

Chris and I have been home for the last week, and it feels like we've been running nonstop since stepping off of the last plane. I won't bore you with the minutiae of our travels. We were able to see most of my family during the short four days we were in California and it was a very special time that we'll cherish.

My grandmother had a kidney infection, kidney stones, and blood clots. Due to her age, the doctors were hesitant to operate on her. Nonetheless, they did, and I am grateful. She'd been home for less than two weeks when we arrived. It's been six years since I saw her last and we've all been through so much. She's not as mobile as she used to be because of arthritis and has to use a wheel-chair to get around. It hasn't seemed to slow her down.

This trip has given me so much to write about, and yet I'm finding it to be next to impossible to put anything down. Maybe later, when I've had more time to sort through things. Until then, I'll leave you with some pictures.

My Grandmother:



Aunt Kim and my brother, John

John and his wife, Mandie

Aunt Lang, Mandie, John, Aunt Kim, and me

My Aunt Lang hosted two barbecues while we were in California.

My Uncle Toi, Lang's husband, on the far left, and my mother on the far right.


My fabulous grandmother holding court.

Mandie and John

Toi, my cousin Kiet, and his mother, my Aunt: Ma Hai

From the left: My Uncle Tony(Kim's husband), Kim, Lang, and Toi

My cousin Richie, Kim's youngest son

My cousin Brian, his dad and my Uncle Loi, Loi's wife Bonnie

Quite a family resemblance


These last two pictures were taken yesterday in Baton Rouge. Chris and I attended a birthday party for our friend Van's daughter, Rosalyn Grace. I've known Van for years and was able to attend his wedding in 2008, two months before I relapsed. Yesterday, I met Rosalyn Grace for the first time. It was yet another first that I wondered if I'd ever get the chance to experience.
Van
Rosalyn Grace. She's a thousand times cuter in person and has the most soulful brown eyes. It's hard not to fall in love with her.