I've been putting off posting this for about two weeks because I don't like to jinx things, but I think things are definite enough now to go ahead and tell this. We've been cleared by Dr. Hosing, my stem cell transplant doctor, to return to Austin now, well ahead of schedule! We have an appointment with my dermatologist here, Dr. Duvic, on Monday. It's always possible that she might see something that would make her want us to stay in Houston, but I think that's unlikely. So, theoretically, we could return to Austin on Tuesday, March 31. However, our wonderful house-sitter, Susan, has had this sprung on her at the last minute and now has to find a place sooner than she had planned on, so we're not counting on March 31. Our rent here is good through April 8, so we're hoping to be back by then. My wife and I are so very excited to be returning soon to see our home, our hometown, and our hometown friends. Later today or tomorrw I'll post more about the particulars of why this is happening sooner than expected. Right now, I just want to post it.

Not much new here, for now. My blood test results for the week were all good. My red blood cell and hemoglobin counts were even up, which I assume accounts for my increased energy level. We've been to the apartment gym twice this week! One of the lovely effects of the radiation is that it killed a lot of my sweat glands. Great for odor control, not so good for dissipating heat. I have to be careful.

My hair is trying to grow back now, but I can tell it's still patchy, so I'll stick with the Joe the Plumber look for a while. What's odd is that a spot that's still kind of bare is a strip on the very top of my head. Since that's the very area that the radiation last fall was not able to finish off, I would have thought that would have been the first place the hair would start coming back. Always a learning experience.

Another sign of revival is that my fingernails and toenails are starting to come back as well. The disease had been affecting them for a lot of last year, and then the radiation pretty much finished them off. But they're growing in a bit now.

We're actually getting to see some South by Southwest performances on TV here. DirecTV, our TV and internet provider here at the apartment, has an entire channel (called 101) that seems to be showing nothing but SXSW shows. They're all from the convention center, not actual clubs, but we'll take it. The highlight so far has been Echo and the Bunnymen.

Speaking of our apartment, if you want to see what our complex looks like, here's a url with some pictures:

http://www.apartmentguide.com/apartments/Texas/Houston/The-Promenade-Hermann-Park/17625/?listingid=17625

Sorry I don't know how to make a link in this program, but this works as a cut and paste. Check out the slide show. The first 8 or 9 are of the business center/pool area, with a few shots of an apartment (much better decked out than ours!) at the end.

Everything's going pretty well here. We made it through the weekend without a repeat of the previous weekend's trip to the emergency center! My skin continues to slowly improve, and nothing alarming has turned up in my tests. In fact the doctors have reduced my weekly clinic visits from three to two. So now it's just Mondays and Thursdays for clinic infusions. The other five days of the week we're infusing at the apartment.

Last Saturday three hometown friends of ours had intended to come see us, but they canceled because two of them were sick. That turned out to be for the best, because I spent a big chunk of my Saturday at the MDACC emergency room. While brushing my teeth after breakfast that morning, I noticed that my right eyelid was red and puffy. We thought maybe I had pinkeye or some such, so I called the outpatient clinic I go to three times a week to ask their advice. I expected them to take a look at me and prescribe antibiotic eyedrops and send me home. No such luck. They referred me to the emergency room. We've been told repeatedly by the transplant folks to go immediately to the ER for things like temperature over 100.5, diarrhea, vomiting, and so on. Puffy eyelids was never on the list. But the thing is, they take all infections very seriously in transplant patients, and they want to blast the infection with everything they've got so it doesn't get out of hand. We're all for that. So we went in at 10 in the morning and got out at 4 that afternoon. They gave me an antibiotic IV drip and a bottle of eyedrops. We're continuing the IV drip at home. This is in addition to the other antibiotic drip I'm on as well as the saline/magnesium drip we've been doing all along. The saline is once a day (on non-clinic days only) for two hours, the cefepime is three times a day for a half hour each infusion, and the vancomycin is twice a day for two hours each infusion. Scheduling is sometimes a challenge.
The Monday and Wednesday (today) clinic visits went uneventfully. My skin still seems to be improving and there's still no final word on whether last week's preliminary biopsy diagnosis of graft versus host disease was correct. Maybe tomorrow.
And the puffy eyelid thing seems to be under control.

Day Fifty; Rules for Visiting

Day Fifty
Yesterday (Wednesday) was day 50 of my 100-day transplant experience. So, if all goes well, we may be heading home in 50 days. We're very happy to be at this point and to have received fairly good reports along the way.
Monday I had appointments with Drs. Duvic and Dabaja. Dabaja (radiation) again passed on the idea of further radiation, saying it looked to her like my new immune system may well be on the job. We showed Duvic (dermatology) a rash that had appeared on my lower abdomen, lower back, and upper thighs. She and her team were kind of puzzled by it, so they took a biopsy. The preliminary word came back on Wednesday that it was graft versus host disease, pending confirmation by a team of specialists. We still haven't received that final word yet, which is disappointing. Stay tuned. As I've mentioned before, a mild case of gvhd is generally considered a good thing, being a sign that the new immune system is identifying "foreign" tissue. Over time, the doctors can control the situation so that eventually the immune system attacks my healthy tissue less and less while keeping up the fight with my disease.

Rules for Visiting
I've intended to post this in the past, but never got around to it. Now is a good time, though, because friends and family are planning to come see us throughout March. We certainly don't want to sound like we don't want visitors, because we do! But the doctors keep telling us how important it is for me to avoid illness at all costs. They say I'm kind of like a newborn in terms of immunity. An illness could set my recovery back and could even prolong our stay here in Houston. Here are their rules:

1. If you are sick with an infectious disease, or have been sick with an infectious disease within the 3 or 4 days before visiting, I can't be in the same room with you.
2. If anyone in your household is sick with an infectious disease, or has been sick with an infectious disease within the 3 or 4 days before your visit, I can't be in the same room with you.
3. I can't be visited by children under the age of 12.
4. Upon entering our apartment you'll have to wash your hands with soap and water and apply hand sanitizer. We will all wear surgical masks. If we go sit by the pool (or any other outdoor, non-enclosed area), only I would have to wear a mask.
5. No hugging. Sorry Carey.
6. No flowers and no fresh fruits or vegetables.

I feel very strange having to set all that down in writing, but that's the restricted world we inhabit right now. I hope everyone understands.

It seems to us that last week's skin outbreaks continue to subside. The nurse and pharmacist that I see at the clinic agree. And still no sign of graft versus host disease. On Thursday, they told me to cut my tacrolimus dose in half. That's the immune system suppressing drug. I had kind of expected them to reduce it by a lesser percentage than that, as Dr. Hosing (transplant doctor) continues to express fears of graft versus host disease. We knew from our visit with Dr. Duvic (dermatologist) on Monday that she's pushing for a reduction, so I don't know if there's been a debate between the two on the extent of the reduction or not. Anyway, we're on day 3 of the new dosage, so we're continuing the symptom-improvement/gvhd watch.

After Dr. Hosing reduced my tacrolimus dosage on Thursday, it seemed to us that my resurgent MF symptoms had begun to back off by the weekend, much to our relief. I had an infusion appointment today (Monday) and also saw Dr. Hosing and the rest of my stem cell team. Her nurse agreed that it looked like I had improved from Wednesday. We're hoping this means that backing off the immune suppression drug is allowing the new immune system to start fighting the MF. Dr. Hosing had consulted with Dr. Duvic after last week's flare-up, and Duvic wanted to take a look at me today as well. We got the impression from Hosing that Duvic might want me to resume photopheresis treatments, but twice a week, not twice a month like we did during the first half of last year. We weren't looking forward to that possibility, but after Duvic saw me this afternoon, she says she wants to give the tacrolimus-reduction strategy some more time to work before trying anything else. She talked us down quite a bit today. She says that an MF resurgence after a transplant is not unusual. We're breathing a little easier tonight.