When I was diagnosed with leukemia by the man who would later become my local oncologist, I asked him how long he thought treatment would last. He estimated that I could be done in about four months. I understood then that he wasn't giving me a hard and fast guarantee, and I understand now that he was giving me a best case scenario. As Chris likes to say, hearing that I had leukemia was like someone throwing a flash grenade into the room. I became fundamentally functional when I heard that pronouncement and the survivalist lurking in the primal part of my brain took over.
Thinking that I would only be away from my home for a few months and still reeling from the cancer diagnosis, Chris and I stepped out of our everyday lives leaving things where they laid. I left dirty clothes in the hamper and laundry to be folded spread out on the couch in our bedroom. There were dishes in the dishwasher and the house could have used a thorough once over. I knew I'd be back, so those things were going to wait for a later time.
I never set foot in our little townhouse again. Strangers hired by a family member packed up our things and placed them in storage. We'd been in the midst of a kitchen renovation and I'd been slacking on finishing the final details, so the doors from the upper cabinets were missing . They were stacked in various places, waiting for me to finish painting them. The house was sold with a thousand tiny projects left to be finished when we realized that we'd need the money it could bring to help finance treatment.
I'm only bringing this up now because I'm about to confess something that I've begun doing recently. Since we moved into our current house in June, I've begun a little ritual before each trip to Houston. A few days before we're scheduled to travel, I begin tying up loose ends. Every single item of laundry is washed, pressed and put neatly away. The house is cleaned from top to bottom with a critical eye turned to every little detail that may be scrutinized by a potential buyer.
I've done this quietly and stealthily so as not to alert Chris to the fact that I worry about a relapse. I finally confessed to this mania yesterday while we were driving to Houston. It was a relief to expose that irrational part of my brain to the light of reason.
My need to put things in order was worse this week than the week prior to my last trip to Houston, three months ago. It was around this time in 2006 when I realized that there was something seriously wrong with my health. Relapse was at the forefront of my mind this time around because I was having my fifteen month checkup just as the most physically obvious symptoms of leukemia began manifesting three years ago.
I had no rational reason to believe that the sneaky little monster was back just in time for a non-celebratory anniversary. I felt, and still do feel well. There are very obvious signs of graft versus host disease riddling my face and body. The very fact that I was able to clean a three bedroom house from top to bottom in a single week should have been my first clue that all was well. Three years ago, I couldn't fold a shirt without almost blacking out. That little moment actually happened. I still can't do things as quickly as you, but I'm approaching something that I can live with.
Chris and I rolled into Houston armed with goodie bags filled with homemade fudge for my friends at MD Anderson. Thanks to my inattention while driving we arrived fifteen minutes late for my first appointment. After the fastest blood draw I've ever experienced, we made the rounds to deliver treats and visit with people I haven't seen since being released from the 100 day bubble. I got the best reception at the infusion clinic where I spent the bulk of my time post transplant getting blood and IV drugs.
Juanita, the first nurse to spot me, actually walked into the center of the bull pen and announced my name in a loud and lilting voice. I found myself surrounded by a small army of nurses who had looked after me on those long clinic days. There were many hugs and lots of catching up while Chris handed out bags of candy to our friends.
We also visited the transplant floor of the hospital, looking for familiar faces and physical therapy where we surprised Marigold, my patient therapist. She didn't recognize me until she saw Chris. The fact that I had hair had thrown her for a loop.
I finally saw my transplant doctor sometime after twelve. She had some concerns over the skin GvHD on my face and I think she may have been on the cusp of increasing my tacrolimus dosage. The rashes have been an ongoing nuisance for months, but this is the first time that she's actually been able to observe one. She was worried that the last reduction in tacro had spurred a greater frequency of GvH occurrences. I was able to reassure her that I'd been having the problem for months before that and that I was still able to keep things under control with moisturizer and cortisone cream.
I think we struck something of a compromise after she extracted a promise from me to report any skin thickening or magnified symptoms. If this occurs, then it's back to a double dosage. All of my medications will remain the same with the exception of magnesium. I get to cut the dose in half so long as I'm only taking 0.5 mg of tacrolimus.
We briefly discussed my continuing loss of bone density which is compounded by the fact that I'm post menopausal thanks to chemotherapy. I'll have another bone density scan in three months when I return for my eighteen month checkup. I'll also have to see an endocrinologist at which point we'll discuss taking drugs to help slow the bone loss.
For those that are interested, my white blood cell count was 8.1 K/Ul, red blood cells were 3.64 M/UL, platelets were 314 K/UL, ANC was 5.48 K/UL, and ALC was 1.17 K/UL. Dr. K. pointed out that I have an elevated eosinophil count of 0.44 K/UL which correlates nicely with the fact that I'm exhibiting signs of chronic graft versus host disease. She even went so far as to circle the eosinophil percentage, 5.4%, which according to her is the ideal number to be looking for when discussing chronic GvHD. It's just enough to provide a protective barrier against a relapse, but not so grave as to be life threatening.
At the eighteen month visit, I'll get my immune system reassessed with particular attention paid to what my T-cells are doing. Dr. K. thinks they'll still be in the low range which would be normal. If the new immune system tests well enough, then I'll have a few more restrictions lifted.
We discussed the likelihood of me returning to school to finish the construction management degree. She advised me that I need to take it very slowly since I'll be dealing with learning problems thanks to chemo brain. I've been given the green light to take one or two classes to assess my ability to cope with concentration and problem solving. I've also been warned that my ability to deal with real life stresses will have changed and that I need to be prepared. It's been duly noted. She's also given the go ahead to another idea that Chris and I have been kicking around. In preparation for possibly being able to return to the workforce, we discussed volunteering a few hours each week. It will allow me to see how I handle a work environment and if I'll be able to maintain the stamina needed to get through a day. I'm sure it sounds like minor stuff, but you need to remember that it takes me almost eight hours to vacuum four rooms and I'm usually wiped out for the rest of the day as a result.
At the end of the visit, I was able to ask Dr. K. the most important question of the day. Chocolate or peanut butter? The answer was, "Chocolate, of course." Chocolate fudge ruled the day.
I'll register for an independent learning class at LSU in the coming weeks and research some local volunteering options. I'm open to suggestions on this if anyone would like to contribute some input.
Believe it or not, after returning home from Houston, we had a late night dinner date with out of town friends. It was a twenty-two hour marathon day without naps. By the time my head hit the pillow sometime after midnight, nothing short of a natural disaster was going to get me out from under the covers.
In no particular order:
At the Chimes LSU, from left to right: Chris, me, Anand, Kurt, and Daniel Martin.
A close up of my cheek. The clusters of red are composed of tiny raised welts that itch to perdition and cover my face and neck. They'll eventually become little blisters that dry out and become scaly and flaky.
We accidentally stumbled upon this great Vietnamese restaurant on our way out of Houston. Had I known about this place while we were living there, I may have become a permanent fixture. Vietopia is located in Rice Village and serves delicious Vietnamese cuisine that rivals the dishes that I grew up with. The service is spot on and drinks, appetizers, and entrees for two came to $23 before tip. The entree portions were enormous and could easily have made two meals.
Close up of my Bo Phon Xao. It's a dish consisting of rice vermicelli, slivers of fragrant lemongrass beef, mung bean sprouts, shaved carrot, green onions, daikon, onion, and chiffonade of lettuce. Heaven in a bowl. It didn't occur to me to take a picture until after I'd mixed everything up and had a few heaping bites.
A view of the restaurant from our table. It was just after the lunch rush. Service is fast and pleasant. The young woman handling our table was gracious and attentive.
Happy and sated after an excellent appointment and a delicious lunch.