Friday, May 28, 2010

100% Mike

About 30 days ago they tested my blood to see what percent were Mike's cells and what percent were mine. I learned this week that Mike's cells have taken over. Of the cells tested 100% are Mike's. They have run the test again this week and we'll know the results in a few days, but don't expect much of a change, if any. I have no idea how they know one person's blood cell from another's, but they do. This is the goal--to have complete engraftment of Mike's cells. So it looks like we've accomplished that. For the sake of my own reputation I would have preferred to see my cells hold out a little longer instead of just rolling over for the Big Fella, but so be it. This transmogrification also explains some recent quirks in my behavior, to wit, being much more obnoxious, constantly straightening up the house, eating only a vegan diet, a feeling of superiority over other human beings, and an insatiable craving for a drink. No coincidence that these are traits of the Big Fella.

Plans are underway for my return to Denver, although it's still 3 to 4 weeks away. Susan and I have an appointment for a discharge class where we're going to learn everything necessary to keep me healthy once I leave the care of MDA. Having gone through 2 transplants, I suspect we know most of it, but they won't let me leave until we attend the class. I'm also wrapping up my physical therapy, continuing to stun them with my peak performances. And I have to have a complete pulminary workup but that has been delayed due to my cough and para influenza. We had hoped to get away for the long weekend, by going to San Antonio or Austin or to visit Mike, but they scuttled any travel plans---you must stay in the Houston area. Hmph.

That's about it. Not much new. Have a pleasant and fun filled Memorial Day weekend.
Dan

Wednesday, May 19, 2010

Hotter Than H ouston

I can't believe I haven't posted for almost 2 weeks. How time flies when you're doing nothing. Then again....So here's the latest. First the weather: Houston is hot and humid (90 degrees, 94% humidity) and it's only going to get worse. The heat sucks the energy right out of me so I've just about taken to staying inside. I'll get my walks in by going to a Super Target or Costco or someplace like that---with air conditioning. I also go to physical therapy twice a week. Those "workouts" are an embarassment to anyone who considered himself an athlete at anytime during his life----like me. But they are about all I can handle right now. According to their data I'm doing very well. Of course you must remember that their data is compiled from people with wheel chairs, missing limbs, paralysis, and octagenarians. But I'm at the top of my class!

I've come down with the crud once again. Seems to be at least a twice a year occurence. The official diagnosis is para influenza, described as a cousin to the flu. I don't have a fever or other symptoms. The doc doesn't seem concerned and says we'll just have to let it run its course. My M protein (a key indicator of degree of myeloma) remains at 1.75; same as where it was in early March. Blood counts are generally good, although I received a transfusion yesterday as my hemoglobin is down a bit. That was my first transfusion since I was discharged from the hospital, which is great. By comparison, I believe I had about 20 transfusions at this date while in Little Rock and then another 5 or 6 in Denver. They will be reducing my anti rejection meds soon, as well as starting me on revlimid I believe.


This weekend I won't have to take any additional fluids. They tried this a couple of weekends ago but my creatinine spiked up (a measure of kidney function), so they put me back on daily fluids. Creatinine has started to go down so we'll try this again.


Susan returned from a long weekend to NYC. It was her first visit to see Catherine in the Big Apple. Of course they had a great time, walking through Times Square, around Central Park and throughout the city. We were both struck by the cycle of life, as Catherine is having the time of her life living in NYC, as Susan was when I first met her. Susan derives great joy seeing her daughter living that life. It was a busy weekend for Susan as she also worked in visits with her cousin Arlene, daughter Stacey and Sigun/Joe and her good friend Hildi. Julia drew the short straw and had to come down to Houston to "cover" during my caregiver's absence. Julia, Gary and I made the best of it by sampling some of Houston's restaurants and discovering the best ever frozen yogurt shop--Red Mango.


That's all for now.

Much love to all,

Dan

Saturday, May 08, 2010

Getting Rid of the Roach

I feel compelled to write another post just to get that creepy roach off the screen. Everything remains stable, so much so that they cancelled my clinic visit on Thursday. I'm still technically on a 2 day a week schedule to be at the clinic. I can't adequately express the relief in not having to go to the clinic every day. Those times and the hospitalizations make me feel as if my life is nothing more than getting treatment, 24/7. Now that my visits are less frequent I feel like I'm gradually returning to life. We've been out to lunch and dinner. I even went shopping with Suz yesterday. Of course I needed a nap after that outing!

We continue to be guarded about my recovery, having been burned by bad news more than once. That being said, this feels different. I am so relieved my counts are stable and that I haven't gotten really sick. I am very happy with MD Anderson and the way they run their clinic. I am also very pleased that my doctors have a longer term plan to keep attacking this disease. They've discussed with me two new clinical trials as possibilities to further reduce the myeloma. I feel better than I have in a year and a half (must be due to those weeks when I was sleeping 16 hours a day). I continue to lobby for early release but my doctor isn't giving in (not yet anyway). We're still looking at a return to Denver sometime in late June.

Happy Mother's Day to all you moms who are reading this, especially my mother, who prays for me daily and repeatedly assures me I'll be OK. Mothers know about those things so I'm sure she's right.
Love,
Dan

Tuesday, May 04, 2010

Our First Kill


Houston's reputation for heat and humidity is well known. What is less well known is that there is a foreshadowing of this season. Just before the heat and humidity arrive, their appearance is announced by ROACHES. Egad! We have nothing like this in Colorado. Not only do they come in Super Size, but they Fly. YIKES. This morning Susan woke me up and asked that I take care of a roach in the other room. Yes, my first kill. Smashed beneath the heal of my shoe and later flushed down the toilet. But before it disappeared I did what Julia has taught me to do: document the roach. See above.
On a more positive note, the doctor told me today that my visits to the clinic will now be reduced to twice a week and there will no longer be fluids infused at home. Freedom is being dispensed in small increments, but nonetheless it's coming. My blood counts continue to be stable. I need an occasional neupogyn shot, but other than that I am producing cells almost like a normal person. And I feel pretty good these days. My sleeping is down to a mere 12 hours a day and the GI issues are slowly resolving. There are plans for further treatment, such as another infusion of Mike's cells, but for now, things look good. We still have a few hurdles to get over but everyone seems pleased with the progress thus far.
As always, thank you for keeping us going.
Love,
Dan