I had a question in the comments to one of the posts about second- and third-hand smoke. I'm very strongly urged by the survivorship nurse to avoid both. One consequence of the chemo and radiation that I've undergone in order to kill as much of my cancer as possible (and to wipe out my original immune system) is that I'm forever more vulnerable to cancer than the average person. So avoiding the known carcinogens in tobacco smoke is pretty much a no-brainer. If, like me until a few weeks ago, you're unfamiliar with the concept of third-hand smoke, it's the residue that smokers have on their breath and clothing and, for smokers who smoke indoors, the residue in the carpet and furniture of their homes.

I had appointments today with Drs. Dabaja (radiologist) and Duvic (dermatologist). We were moderately nervous about the appointments, fearing one of them would see something that would make them want us to postpone our return home. But nothing like that happened, so we're in the clear. We'll probably be back within a week!

In all the excitement of last week in relating the news of our early release, I've yet to mention the most fun aspect of the week, which is that my niece from Midland and my nephew from Chicago flew in to pay us a visit. They got here Tuesday afternoon and stayed until lunchtime Thursday. We had a great visit with them, and Wednesday we went out to the Black Labrador (a fairly decent imitation of an English pub) for lunch and then went to Memorial Park and took a short walk on one of the trails in the arboretum there. Thanks for the tip about that place, Joel. And thanks again for the visit, Chris and Lisa.

This is for our friends who have asked about what our post-release life will be like. Before our visitors arrived Tuesday we attended a mandatory discharge class at MDACC that morning. It lasted about two and a half hours and was taught by a survivorship progam nurse who's been in that field for 18 years. The class was an interesting mix of encouragement and scare tactics. She emphasized that most transplant patients do very well, but that there are still precautions to be taken and habits that have to adopted. Many of these we knew about, but a few things came as a surprise. For example, according to her I have to wear sunblock of at least SPF 45 every day for the rest of my life. Apparently excess sun can trigger graft versus host disease (GVHD). To prevent infection we were given a list of dos and don'ts, including washing hands regularly, staying out of crowds, encouraging friends and family to get flu shots, staying away from sick folks, eating well-cooked foods, and eating at familiar restaurants. Trudy's and Angie's here we come! I'm to stay away from children who've had live-virus vaccinations. In January 2010 I'm to begin retaking all the childhood immunizations. I'm to immediately report a fever 100.5 to my doc, even if it's 3 in the morning. She said there's a common phenomenon called "chemo brain," which includes difficulty remembering things and other mental problems. I think I already have that, but I can't remember. One of her Power Point panels warned that some days I may be downright cranky. Yeah, that'll be different. Another one said to plan rest periods during the day. (Advance warning to my co-workers -- I'll probably start feeling nappish whenever a big folder hits the work tray.) No yardwork or gardening for a year -- mold, fungus, and other microbes in the soil and on plants. I won't miss mowing, but I will miss gardening. We're to inspect my skin and mouth for signs of GVHD every day for the rest of my life. I'm to do a "joint check" every day for stiff joints. We can keep our kitties, but litterboxes are a no-no, which is not a problem for us anyway. No kitties in the bed at night. Sorry Boogie.
Those are the main points of what we learned. In re-reading this posting, I realize that it's pretty disjointed. I don't feel like any rewriting, so if anyone has any questions, please feel free to ask.

I promised more details concerning our early release from MDACC. If you missed yesterday's post about it, you might want to read that first.

Monday before last, on her weekly visit with me at the infusion center, Dr. Hosing just sort of casually mentioned that since I had just cut my dose of the immunosuppressant Tacro to zero we would need to wait two weeks. Neither of us knew what she meant, so we asked "wait two weeks for what?" "Until we can release you," was her reply. We were stunned since there had been no previous mention of early release. She told us this on day 62 of the (supposed) 100-day stay we'd been told to expect, so two weeks would have meant release on day 76. That's much earlier than we'd dared hope. Most early releases we've heard people talk about are usually at the 90th or maybe 85th day, so we felt really fortunate about that. So it was even more amazing when she said this Monday that we could go on that day, which was day 69, a full month early! The reason for this is that I've shown no signs of graft versus host disease after reducing and then eliminating the immunosuppressant. Also, my other blood levels that they monitor have stayed at safe levels. All of these things will be measured weekly by my hometown oncologist once we return.

We got even more good news when Hosing also told us that day that I could have my central venous catheter removed. That's the port on my left chest, just below my collarbone, where they took blood samples and gave me my infusions without having to stick me with a needle each time. I'd gotten fairly used to it, but it certainly had its annoyances. On home infusion days when we didn't go to the hospital, not only did my wife have to attach the infusions to one of the ports (sometimes to both of the two ports at once), but she had to flush each of them with, first, a saline syringe flush and then a heparin (blood thinner) syringe flush. The other major annoyance was that there was a 4" X 4" bandage covering the entrance of the catheter into my chest, and we'd been warned that we were to avoid getting it wet at all costs for fear of infection. If we ever got it wet we were to go immediately to MDACC to get it changed. So every time I bathed, my wife had to construct a several-layer-thick covering of plastic wrap to completely cover the bandage (and the two ports hanging down out of the bandage) to keep it dry. Then she had to "frame" the plastic with medical tape so that I could tape it to myself and seal it all off. I would then have to wash my face and head over the bathroom sink, making sure not to stand up until I had dried off, since the water might run down and find it's way through our tape and plastic barrier. Then I'd get in the shower and wash all but my upper left chest and shoulder area, all the while being very paranoically aware of that area. Like I said, a major annoyance for us both. So we very happily left the infusion clinic and went down to the second floor to get it removed. Unlike the insertion procedure on Jan. 5, the removal only took about 5 minutes and required no sedation. I couldn't get the new bandage wet for 24 hours, so it was Tuesday before I could remove it and take my first real, worry-free shower in almost three months. It was almost as wonderful as the first shower I took after I returned from my three-month, 1976, low-low-budget, post-college trip to Europe smelling like a hobo. (Or what I suppose a hobo smells like. To be clear, I have never actually sniffed a hobo.) So, to summarize, getting rid of the catheter was a very good thing.

One of our friends has inquired about what our post-release life will be like, as far as survivorship care and precautions go. I was going to address that today, but this post has already gone on for far too long, so I'll try to get to that this weekend.

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.