We returned to Houston June 15 for appointments at MDACC that day and on the 17th.

On the 15th, we saw the physician assistant for my cardiologist for a followup for various heart tests I had taken previously. He said that my heart shows improvement as a result of the drug (coreg) that I've been taking to counteract the slight damage done by the chemo I had last summer. It's basically an electrical problem that can lead to arrhythmias (and worse, if untreated). In January I tested 45 to 50%, just below normal. Now I'm 50-55%, which is low normal. I believe the percentage represents the percentage of blood expelled from the left ventricle per contraction, but don't quote me.
The second appointment of the day was with my dermatologist, Dr. Duvic. This was the visit we were most worried about, because in the six or seven weeks since we'd last been there, I've had several more lesions appear. Other lesions that had been present at the last visit have faded or disappeared, but we just weren't sure how concerned we should be that new ones were still appearing. Fortunately, the doc says it's not at all unusual for me to still be developing some new lesions. After evaluating me, she said that I was maintaining about the same overall coverage as in April, so not to worry. That was a huge relief for us. She said that my immune system is still very far from being as strong as it can be, so, theoretically, it will be more efficient in the months and years to come in combating the disease.

Tuesday the 16th we had no appointments, so we went to Bayou Bend, the former home of Ima Hogg, daughter of Texas' first native-born governor, Jim Hogg. Interesting family and an interesting and beautiful place.

On the 17th they drew blood and gave me a full pulmonary test. I passed the pulmonary test, and later in the morning I had an appointment with the physician assistant for my bone marrow transplant doctor, who evaluated the blood tests for us. All the news was good. She reinforced Dr. Duvic's assertion that it wasn't unusual to still be cranking out new lesions.

So it was a pretty great visit, really. We'd been very apprehensive, but all our fears were allayed by the tests and the physicians' evaluations.

On April 14 we returned to Houston for tests and other appointments. The 14th was tests only -- CAT scan, bone marrow aspiration and biopsy, x-rays, and blood tests. Except for the blood tests, all of these were for a follow-up visit with the stem cell doctor on the 21st. On the 15th we saw Dr. Duvic. She basically said my skin looked pretty good, and she doesn't want to see me again until mid-June. She also removed some of what she thought was a squamous cell carcinoma on my forearm. (This week they told us that it is a squamous, and that I'll need to find a Mohs surgeon to finish the surgery. They think they can fix me up with a surgeon here in town without needing to return to Houston.) We also saw Dr. Plana, my cardiologist, and he ordered an echocardiogram and cholesterol tests.
We drove home on the 15th, and returned to Houston on the 21st. They did the echocardiogram, and I also got my quarterly infusion of Boniva. (I don't know if I've mentioned this before, but I'm involved in a Boniva study. Apparently bone loss is a big issue for transplantees. So I'm in a group taking Boniva along with Vit. D and calcium. Another group is just on D and calcium. They did a bone density on me before my first dose in February. They'll take others at six and twelve months.) Then we saw Dr. Hosing, my transplant doctor. She said the CAT scans looked good, as did the x-rays. Unfortunately, the marrow analyses still weren't in, even though they were done a whole week earlier. We still haven't heard. But the news we did get was all good, so we were pretty happy.

We're Back Home!

We got back to our hometown this afternoon (Saturday) about 1. We're pretty much wiped out. I think that has more to do with the emotional release of getting back than with the effort involved. We're extremely happy to be back, and I expect we'll be even happier tomorrow after a good night's sleep. Thanks again to Susan, our house-sitter, who kept the place looking great. It was a tremendous relief to feel that our house was in good hands. And thanks again to all who sent messages and thoughts of goodwill during our Houston sojourn.

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.

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.

We just got back from our Thursday stint at the clinic. With the resurgence of some of my MF patches in the last week, Dr. Hosing sent me to see Dr. Dabaja, my radiation doctor from last fall, to get her opinion as to whether some localized radiation on those patches is called for. Having gone through whole-body radiation last fall, Dr. Dabaja said today that I have too many patches right now for more radiation to be feasible. It would pretty much require doing the whole-body thing all over again, which, besides being dangerous so soon after last fall, would also be ineffective. She wants to wait two weeks and see if the decrease in my tachrylimus medication, which began today, will cause my new immune system to start fighting my MF. Here's hoping. This puts us in the very uneasy position of just sitting around for the next few days waiting for things to happen. The best outcome, like I said, will be if the only thing that happens is that we start to notice that my MF patches begin to subside. The worst outcome is if I develop a bad case of graft-versus-host disease (gvhd). That's when my new immune system identifies one or more of my normal systems (typically skin, intestinal, or liver) as foreign, and attacks it. If that happens, we are supposed to immediately go to the MDACC emergency room. If they confirm gvhd, I think readmission to the hospital so that they can get control of the situation is common. We could also see a combination of a little bit of gvhd AND my new immune system starting to attack the MF. Dr. Dabaja says we should know within a week which way this is going to play out. So here we sit, watching and waiting. And hoping.

I've got a lot of catching up to do!
On Thursday night's post I forgot to mention that my wife got to go to lunch Thursday with an old friend who was in town from Florida. Thanks Bry!
Friday morning I had a bone marrow aspiration and bone biopsy appointment that went as well as can be expected. Other than that, we had a three-day weekend. So Friday, Saturday, and Sunday we did the home infusion procedure. I think we've got it down now.
Yesterday (Monday) we got a very good bit of news from Dr. Hosing, my transplant doctor. She handed us a test result that reads: "The post-transplant microsatellite polymorphism pattern is identical to the donor pattern . . . which is compatible with successful engraftment. No chimerism is observed. Microsatellite polymorphism analysis reveals that 100% of T-cells are of donor origin. Microsatellite polymorphism analysis reveals that 100% of myeloid cells are of donor origin." This is based on a gene scan they performed. Basically what it means (as we understand it) is that the stem cells given to me by my donor have fully engrafted in me and have completely taken over from my immune system. The word chimerism is derived from the mythical beast the chimera, a creature composed of parts of more than one animal. If chimerism HAD been observed in me, it would mean that some of my immune system would still be active in me. So "no chimerism is observed" is a good thing. I gather that a little chimerism is okay and that in most transplant cases it goes away, but to have achieved 100% engraftment at this stage is very good. As we understand it, the next big hurdle will be determining whether my new immune system is fighting my MF. (Just because I have a brand new immune system, it doesn't necessarily follow that it will do any better at fighting my illness than the old one did. Usually it does, but only time will tell.) I have a few new MF spots on me and a few resurgent old spots. The doctors (Hosing and Duvic) say that that's not unusual at this stage, and that it's still too early to expect the new system to be fighting the MF. But it's still pretty unnerving for us to see the MF coming back even a little after we've seen it slowly retreating these last months. Duvic's last words to us yesterday were "not to worry," so we're going with that as best we can.
We're off today (Tuesday) and will be back to the clinic tomorrow.

This week has been pretty routine. They've definitely cut my clinic visits back to three days a week for now. They say it's because I'm doing well, and I believe them because they're wearing stethoscopes.

Monday of last week Dr. Duvic biopsied a spot on the back of my right upper arm. Tuesday they let me know that it was positive for MF. She's prescribed a cream called aldara that I'll use for six weeks. It's supposed to provoke a local, limited graft-versus-host-disease response. No one seems to think this is alarming. They say my new immune system is still developing and not totally on the job yet.

Tonight (Thursday) I had a CAT scan. They made me drink a little more of the barium shake than usual, so I'm a little queasy right now. I have to stay up long enough to get over that, eat a little something, and take the evening meds. Tomorrow, the only thing we have scheduled is a morning bone marrow aspiration and bone biopsy. It's about the least fun thing you can do with your pelvis.

Sunday was fun. We had the whole day off from the hospital, and, most especially, our dear friends Tom and Kim drove into Houston for a visit that afternoon. Thanks guys! I had more energy yesterday (and today) than I've had in a while, so the visit was well timed.
Mondays are my stem cell doctor's (Dr. Hosing) day to be on the 10th floor, so I saw her today. She still says things are going well. If my online MDACC schedule is to be believed they're shifting me to a Monday-Wednesday-Thursday infusion clinic schedule starting this week. That can change of course if my counts took a downturn or something else comes up. But we didn't think I'd be eligible for a 3-day week until at least another 2 or 3 weeks went by, so we're very happy about that.

Even though I've been out of the hospital for almost two weeks, I've only gone out in public (other than MDACC) once, and that was to the grocery store on a weekday afternoon, when we figured ito wouldn't be very crowded. They've done such a good job of cautioning us about exposure to germs at this point that we're both very paranoid about going anywhere other than where we have to. But I have to admit that I'm getting cabin-feverish now, so tomorrow (Tuesday, a day off) we're going shopping! Hey, it's a start.

I went to the hospital yesterday (Friday) for my blood testing and outpatient infusion therapy. My platelet levels continue their slow and steady climb, but the red blood cell and hemoglobin counts are still down, which makes me very, very lethargic. My wbcs, which had sagged below normal, zoomed up to above-normal levels after my neupogen shot on Wednesday. That will come down since it's artificially induced. In fact it may already have come down, but we won't find out until Monday because (drum roll and cymbal crash, please), they've given us the weekend off! We have to do the home infusion thing both days, for which they gave us all the supplies, but the great thing is to not have to be in the hospital bed in the ambulatory treatment center for four hours. We've already done today's infusion, and we're both getting more comfortable with it. Today was the first time we've hooked it up without a nurse overseeing things, but it all went okay. We're thrilled that they think I'm doing well enough to let us have so many days off already. We'd had the impression that the first two weeks out of the hospital would require going back there every day.

I should've posted this morning when I had more energy. We almost had a day off from the hospital. They let us do the saline/magnesium drip at home with a portable unit. We had received instruction on how to do that, but when the time came this morning to do it, we were unclear on a few points, so we went in to MDACC to have a nurse observe and instruct as my wife hooked me up to the unit. It involves connecting the liter bag of saline to a battery-operated pump with tubing. The tubing runs through the pump and out to me, where she has to plug the line into the tubing coming out of my chest (my central venous catheter). I think you can see how we might be a little nervous about it. We had to be at MDACC at 2:30 today for a bone density test, so we just went over to the Ambulatory Treatment Center so the nurse could talk us through it. My wife did great. This is Number 695 in the ongoing series, "Things I Never Thought I'd Have to Ask My Wife to Do for Me." Thanks, dear.

I'm still here. I would have posted Superbowl Sunday since my energy level revived late Sunday afternoon, but, well, it was Superbowl Sunday! It was an interesting day, and not always in a good way. We went to MDACC at 10, got back at 4, after they gave me my usual liter of saline with a magnesium chaser. I was actually looking forward to taking in the last of the interminable pre-game nonsense, as one of my goals while in the hospital was to get out in time to watch the Superbowl back at the apartment. We'd been home about half an hour when the fire alarm for our building went off. We all dutifully evacuated the building. My wife and I went to sit by the pool, where we could still faintly hear the alarm. It seemed to take the HFD quite a while to get here. When they did, it was determined, as far as we could tell, that some yo-yo had been grilling on his back porch (against the rules) and had set it off. We got to go back in about half an hour before kickoff. We watched the game, had some game food, watched Springsteen, and then in the final minutes of the game, I had a migraine. I've had maybe 20 of them in my life, starting when I was a senior at UT. They're ocular migraines, causing fairly spectacular, jagged, psychedelic light shows and some temporary blind spots. They usually pass in an hour or so. I decided to see if the darvon they gave me at MDACC would have any effect on it. It did! About ten minutes after taking it, it shut right down. The only thing I've ever found that had the same effect is Tylenol 3 (with codeine). But I'm not allowed any Tylenol or aspirin or any other drug that masks a fever right now. So the game ended, the migraine was gone, and I could have posted then, except that I was on darvon, which makes me pretty loopy. Then Sunday night I had a bad night's sleep. Don't know why. Could have been the migraine after-effect or the darvon, but the end result was I was out of it yesterday. This morning I feel pretty great, though. Yesterday we met with Dr. Hosing (my stem cell transplant doc) and Dr. Duvic (my dermatolgist and my original doc here). They both pronounced me to be doing well. Hosing said it will be 1 to 3 weeks before she expects my new immune system to start attacking my disease. (We thought, just based on visual evidence, that it already was, but what do we know?). And Duvic took a biopsy of a spot on my arm because she thought it might be MF. I was surprised that she was surprised that I might have an MF spot. Especially if they think my new immune system is not on the MF-attacking job yet. Again, what do I know? Anyway, neither doc thought anything seemed to be amiss.
Okay, times up. We're off to MDACC.

Sorry I haven't posted, but I've been completely exhausted since getting out of the hospital. It's taking pretty much all my energy to do the going back and forth to MDACC every day. So far, we've had to be there at 8 or 10 a.m., and we stay there until about 4. Then I come home and collapse. This is apparently normal. My wbcs are still in the normal range, and my red counts are slowly rising. I have to think that this will translate into some energy before too many more days go by. Thanks for all your comments and support.

Liberation Day!

They released me today from MDACC! We're back at the apartment. It was so great to be outside again after 3 weeks and 3 days. Not that I was counting or anything. I'll post more tonight or tomorrow, because right now I'm exhausted and really looking forward to a nap in a non-hospital bed. More later.

Yesterday my wbcs were up to 5.6, but it was a very low-energy day, so that's why I didn't post. I've got a little more zip today, plus my wbcs are up to 8.4. Since I didn't get a wbc-inducing shot yesterday, that's pretty great. As I understand it, they wanted to see how my system would do without the artificial stimulus of the shot, and so far so good. During today's doctor visitation, Dr. Shpall pronounced my engraftment to be "early and fast." She said she would normally expect an unrelated-donor transplant to remain hospitalized for longer, but that if things remain okay with my readings, they'll discharge me on Thursday.
I've been asked what the next step is after they discharge me. For a week or so, I'll have to come back to MDACC every day (including weekends) to be blood tested and monitored. The blood tests will determine what, if anything, I need to be infused with. They say one of the most common things I'll need is magnesium. Other possibilities include platelets and red blood cells. I'm sure there are other things, but I'll learn about that as we go along. After that first week or two, they'll start giving me weekends off. After a week or two of that, it goes to MWF. After that, if I'm doing well, we get to go home some time in late April! During this outpatient period, my wife, being my caregiver, has the task of being with me 24/7. I figured that surely she would be able to run a quick errand to the grocery or drug store, but MDACC says no. They mean 24/7, except for my time spent at MDACC. They've suggested that that's a really good time for her to get errands run. She can drop me off, and when I'm done, I'll call her to come pick me up. I also hope she'll use it for some much-deserved time off from having to focus so much on her sick (but getting better!) husband. Love you, dear.

My red blood cell counts are still down, but my white blood cells continue to climb. Friday I was at 0.4, Saturday I was 0.8, and today (Sunday) I'm at 2.6. I've been told that I need to get to 3.0 to be eligible for release from the hospital and to go back to the apartment. Our hopes are high for this week.
I continue to be very tired and my stomach is still kind of acidic, which affects my appetite. However, seeing and hearing about the condition of many of my blood brothers and sisters here on the floor, I count my blessings. There is tremendous suffering going on behind many of the doors I walk by when I do my walking, and it saddens me greatly, but it also helps me keep my own situation in perspective.
One new side-effect that showed up yesterday is bone pain. We had read about bone pain in the literature, but now that I'm cranking out loads of new white blood cells I'm experiencing it first hand. Apparently my marrow is working so hard at producing cells that it's making some of my bones hurt, specifically my pelvis. Yesterday afternoon my lower back started to hurt, which I thought was due to too much sitting and bed time. The nurse, however, suggested that it might be bone pain. After an hour or two it ramped up some more, and I cried uncle and requested pain meds. She gave me Darvon. My bone pain laughs at Darvon. We switched to Dilaudid. Oh yeah! The pain pretty much disappeared, and I got a nice little four-hour float on Cloud 9. They gave me a half-dose at midnight to see me through until morning. I'm not really sure I needed it, but who am I to just say no to drugs? So far today I'm fairly pain free, but as they are giving me daily shots to promote wbc production, I may have cause to call on my friend D another time or two.
Please keep your fingers crossed for the possibility of my hospital discharge this week.

I haven't posted the last few days because my energy level is way way low. It might sound crazy, but sitting in a chair and typing has taken more than I've had available the last two days. I'm feeling a little more energetic today, but not a whole lot. My wbcs are at 0.4, way up from zero, but still a long way from 4.0, the bottom of the normal range. The docs say my levels should start going up faster in the next few days. I'll keep my fingers crossed.

Day Seven

Today is Day Seven, so I get my white-blood-cell promoting shot at 4 p.m. They say my counts should begin to go up some time this coming weekend. Bring it on. My platelets are way down, too, so I'll also be getting platelets today. Despite the low counts, I actually feel pretty good. I've been for a walk this morning, and I hope to go for one or two more. That's all for today. Gotta go watch the inauguration.
It's a beautiful day!

Happy MLK Day!

I just got my daily blood results, and my white blood cell count is zero! Yesterday it was 0.2. Normal range is 4.0 to 11.0. So the bad news is I'm at rock bottom as far as my personal infection prevention system goes. The good news, as my nurse says, is that I can only go up from here! Tomorrow they start giving me injections intended to boost my wbcs. Can't wait.

I was too tired last week to tell this story, but I want to tell it now. Wednesday morning was a lot of fun. We turned the TV on around 9 and found the movie The Water Horse. It's a Scottish movie about a little boy who finds a Nessie egg and raises the creature until it gets too big and has to be released into the loch. Fairly cute. We watched it as much as we could with nurses and doctors coming and going. When it was over, we channel surfed until we found a movie on TCM called Gentleman Jim. It's a 1942 movie about the Irish-American boxer Jim Corbett (Errol Flynn), who's credited with modernizing boxing in the 1880s-1890s. He knocked out the great Irish boxer John L. Sullivan (Ward Bond). It was fun, very Irish with lots of fighting and drinking, and it continued the developing Gaelic theme of the morning. (For those who don't know, the whole Celtic thing is a major interest of mine, as well as a big part of my ancestry.) The Gentleman Jim movie had only been over for a few minutes when there came a knocking on the door. One of the nurses looked in and asked if we would like to have a music therapist come in and play some harp music for us. My wife and I were thinking "you've got to be kidding." We of course said yes, and in came a young woman named Ingrid (yet another coincidence that many of you will be aware of) with her Celtic harp and proceeded to play a set of mostly Irish tunes! Then it was time for lunch and my nurse came in and set me up with a Guinness drip on my IV tree. Okay, I made that last bit up. But, really, it was kind of spooky. It was like my room had been zoned Gaelic for the morning as a little morale boost. Very cool.

Speaking of morale boosts, thanks to our friends P and J for the visit this weekend! They're from Austin and came into town for the day, took my wife out for lunch and stopped by the room for a nice long visit. Thanks again, guys!

And Happy Birthday Nola!

All is well here. The docs say my blood numbers are where they ought to be, which right is quite low. The coming week will see the beginning of their attempts to start making my counts rebound. I'm looking forward to that. I'm still fairly low energy, but I try to get out for my walks when I can. I've had a slight problem with nausea when eating, so they've been giving me zolfran to combat it, allowing me to go ahead and eat. A lot of my fellow patients here clearly have a real problem getting anything down, so I'm very grateful that my situation is not so dire. Not eating could take you down real fast.

Some have asked what visitation rules are here. Here they are:
1. Two visitors at a time. (Although they seem flexible on this.)
2. No one under the age of 12.
3. Hours are 8 a.m. to 10 p.m.
4. Visitors must wear a mask and gloves in the room. (And a fetching yellow smock under certain conditions!)

My energy has been very low the last two days. I didn't even turn the computer on Wed. or Thurs. The docs say that my low blood counts and other readings are about where they expect them to be, so the low energy is not alarming. I'm feeling better today. I had a real breakfast this morning, after a totally liquid menu yesterday, so that was nice.
Now that the chemo and transplant are done, my IV tree is much reduced. Mainly it's anti-virals, anti-fungals, anti-bacterials, and other factors to temporarily replace my lack of an immune system.
I'm doing fine. We're optimistic, and I hope in few days I'll feel like posting with more frequency! And, as always, thanks so much for your comments and support.

Day Zero

I didn't post yesterday because I felt pretty bad. I had a lot of cramping and bloating. They've put a lot saline solution in me the last few days because they want a 'wet' environment for the transplant. So when I checked in a week ago, I weighed 170. This morning I weighed 184.
I felt much better this morning, though, which is good, because today was transplant day (Day Zero or Birthday, as the nurses call it). Yes, I now have another person's stem cells coursing through my veins and attempting to enter my bone marrow in order to boot me up a new immune system. Since my transplant was a bone marrow donation and not just a stem cell donation, the procedure took three and a half hours, not the fifteen minutes we had initially been told. No matter. All I had to do was sit in my room while the nurse hooked up the big bag o' marrow/stem cells/whatever to my 'tree' and feed it into my catheter. I just had to lay there and watch a rerun of the OU/Florida game on a sports channel. Now the waiting begins to see how well the new cells engraft. The next few weeks will be a challenging time because my white blood cell counts will be down, and I'll have to be very careful to avoid any sort of infection. Anyway, I'm going to cut this short because I'm pretty exhausted. We're both just very happy that this milestone has been reached. We'd been dreading this day, although we have of course hoped that it would effect a cure. But it's just such a strange, science-fictionish procedure that it's had us pretty scared. The day went well, though. Thanks to all of you who have sent comforting words through this blog or otherwise. We can't tell you how much it means. And please also send out healing wishes for my anonymous donor, wherever he may be. Thanks.

I need to start off by reminding everyone to help us maintain our anonymity on the web. Please make sure that you don't make any comments that could possibly identify me or my wife. We ask this for the sake of the security of our home. Thanks.
Yesterday was a crazy day. They added two drugs to my chemo cocktail. Melphalan didn't affect me, as far as I could tell, but Thymoglobulin really threw me. Within 10 or 15 minutes of taking it, I began shaking uncontrollably. The doctors call it rigors (rhymes with tigers). I've gotten that with the flu, but never like this. I could've gotten a job at Lowe's as a paint shaker. Fortunately, Nurse Mercy (her real name) brought me a demerol drip that killed the shakes within minutes. But the day was just getting started. My temp stayed high for hours, once getting up to 102.7. Thymoglobulin is known for giving you flu-like symptoms, but the doctors can't assume that the symptoms are just the result of the drug and not an actual infection. So at 9:30 last night, they sent me down to the 3rd floor for a chest x-ray. It was clean, so my symptoms are apparently just the drug. It really wiped me out all of yesterday afternoon and evening. I wasn't looking forward to today, since I'm getting the exact same treatment today that I got yesterday. They had told me that the first day on thymoglobulin would be the worst, and that my body would adjust somewhat. Also they extended the drip from 6 to 10 hours today. It's 3:45 right now, and I've been on it since 12:30 with no adverse reaction at all. Weird, but I'll take it.

After posting last night, our friend R called and said he was in town for a checkup at MDA. He said he had time to come up to my room and see us. Although R is our friend, we'd never actually met him. He's a patient of my Austin oncologist. Dr. Kasper thought it might be useful for us to speak with R because R has been through the stem cell transplant process. He was being released from his 100-day Houston ordeal right around the time I was being diagnosed back in November 2007. We had spoken to him numerous times in the fall of 2008 after Dr. Kasper contacted him on our behalf, but yesterday was our first opportunity to meet him. He's a great guy and has been very helpful in giving us a lot of insight into what's in store for us. He came up after his appointments (his doctors had all given him positive reports!), and he was able to spend about an hour with us before he set out for Austin. Thanks R! Continued good health!
Tomorrow I begin a new stage in my chemo. Along with the fludarabine, they're adding thymoglobulin and melphalan. (Is Steve Martin in charge of naming these things?) Some people apparently have flu-like reactions to thymoglobulin, so my posting may or may not happen this weekend, but we'll see.

No Longer a Type A

Today was pretty much like yesterday. Still no side effects from the chemo.
Something I forgot to mention about my donor is that he has a different blood type than I do, so when his stem cells have engrafted in me, I will have a different blood type. I'll go from A positive to O positive. I thought this sounded a bit dangerous, having always heard that you have to be careful with mixing different blood types. But the doctors assure us that it's not a problem. For one thing, the chemo will apparently wipe out a good deal of the antibodies and antigens that are the determining factors for blood typing. Also, O positive is the "lesser" universal donor group -- O negative being the true universal donor. Still, I never thought that changing blood type was ever an option. I will, however, still retain my allergy to peanuts and my dislike of jazz.

Settling in at MDA

I checked in to the 11th floor of the Alkek wing of M. D. Anderson yesterday. The floor is completely dedicated to stem cell transplant patients. It contains 4 "pods" of 13 beds each. The 52 rooms stay booked constantly. I feel very fortunate.
We checked in very early in the evening. Even so, they didn't seem completely ready, and they suggested we escape to the cafeteria so that I could enjoy a final "outside" hour before being sequestered on the 11th. Yes, contrary to our earlier understanding, I'm confined to the floor for the 3 to 6 weeks of inpatient care. I had thought that I'd be able to go wandering anywhere in the hospital, including out on the grounds. But no.
The only treatment I received yesterday was fluids. So they hooked me up to my "tree," using the central venous catheter they installed on Monday. Even though I was very tired last night, getting to sleep in my new environment was difficult. I had a hard time adjusting to the mechanical sounds of my tree and to the pneumatic adjustments the bed makes whenever I move. But I'm getting used to it. My wife wanted to spend the night here (the room has a Murphy bed), but I encouraged her to spend the night at our apartment. I think one of us being confined to a hospital is plenty! She'll spend some nights here, but I think it's better for her to have a more normal routine. Also, the staff come into my room at all hours to check vitals, etc. Not the best environment for a good night's sleep.
Today I received my first chemo, a drug called fludarabine. I got it at about 9:30, and I can't say I've noticed anything. They say it can take 4 or 5 days before side effects set in. My dose isn't a particularly heavy one, so there's a chance I won't have too bad a time. We'll just have to wait and see.
The food here is pretty great so far. Really! For breakfast I had a bacon and cheese omelette with French toast, and for lunch I had grilled salmon with macaroni and cheese and spinach. The great thing is that you can call room service any time from 6:30 a.m. until 9:30 p.m. You're not tied to their schedule. Apparently they re-did their whole food service system a few years back and instituted that way of doing things. It makes a lot of sense for a cancer hospital. Most people here have a very hard time keeping their weight up and their food down, so allowing people to eat when they are actually hungry makes enormous sense. Let's hear it for state-run health care!
We learned last week that my donor is a 19-year-old male. He will go into the hospital on the 12th, be placed under general anesthesia, have about 25 needle punctures made in his pelvis, and have one-and-a-half liters of bone marrow extracted. Yeah, a total stranger is giving up over 48 ounces of bone marrow for me. I didn't know the body had so much marrow, let alone just the pelvis. I've had six marrow extractions so far, spread out over 3 widely spaced times. It's no picnic. He's getting 25 at one time. He'll be unconscious, but believe me, this kid's going to be in a lot of pain for several days. So I have a new hero. And my New Year's resolution is to now stop making any disparaging comments about the younger generation for the rest of my life.

The Story So Far

I'm starting this blog for a number of reasons. I want to give my family and friends an easy way to keep tabs on my situation as I deal with mycosis fungoides. I also want to provide information and, I hope, encouragement to others diagnosed with MF who might be looking for an account by another patient. I wish to remain anonymous on this blog, so if you post a comment, please don't leave any information that could identify me. I want to thank all my family and friends for their love and support. Especially my dear wife, who has had to endure all of this with me and who has borne it all with incredible love and bravery. I love you, sweetheart, and I couldn't do this without you.

The rest of this post will be a quick summary of how I got here.

Sometime in the 1990's I developed a rash on my waistline. It was especially aggravated by sweat when I would work outside or go to the gym. For years I thought it was just an allergy to elastic. It would itch tremendously, and my only recourse was to wear a t-shirt under an outer shirt, and tuck the t-shirt inside my underwear to keep the itch from driving me crazy. Eventually, the rash spread to all areas of my body. My hands were affected, and it became painful to reach into my pocket for my keys or wallet. Walking became painful. My first dermatologist (who I went to periodically to have non-malignant skin cancers removed) never took a biopsy as my rash spread and kept insisting that I just had eczema. He said "some people just have itchy skin." He gave me steroid cream to alleviate the itch. It kind of worked, but my wife and I scoured the internet looking for other answers. Finally, in the fall of 2007, I thought I had figured out that I might be suffering from some form of wheat allergy. I found a dermatologist who specializes in celiac and made an appointment. She took one look at me and declared that whatever I had, it wasn't celiac. She took a biopsy in late October 2007, and when the diagnosis came in, we were stunned to learn that I had cutaneous T-cell lymphoma (another name for mycosis fungoides). We had never heard of it. She immediately referred me to Dr. Duvic, a world expert on MF at The University of Texas M. D. Anderson Cancer Center in Houston. Dr. Duvic confirmed the diagnosis. She placed me on oral antibiotics and antifungals, explaining that there is evidence of bacterial and fungal involvement in MF. She said some people with MF have even gone into remission with such treatment. Unfortunately that was not the case with me, so she moved me on to a process called photopheresis in January 2008. I won't explain that process, but you can find a fairly easy-to-understand explanation at
http://en.wikipedia.org/wiki/Photopheresis. After several months the photopheresis began to make inroads on my disease. My skin began to clear somewhat. But in late spring 2008 I developed a lesion behind my right ear that was diagnosed as a more aggressive form of the disease. Dr. Duvic canceled the photopheresis and recommended that I undergo chemotherapy, radiation, and a stem cell transplant. This was a devastating development since we had begun to see results from the photopheresis. For most MF patients, the disease is manageable and not life-threatening. But now we were in much more dangerous territory. Most stem cell transplants are fairly successful and result in longer survival and an acceptable quality of life. But for some patients, the transplant either doesn't take (often resulting in death from the disease) or results in severe, quality-of-life-reducing side-effects from graft versus host disease. As inconvenient as the monthly photopheresis trips to Houston were, they at least weren't life-threatening in any way (aside from Houston traffic). So, beginning in early summer of 2008, I began 12 weeks of CHOP chemotherapy. The treatment was overseen by Dr. Romaguera at M. D. Anderson, but conducted by Dr. Kasper in my hometown, Austin. CHOP is an acronym for the 4 drugs used in the treatment. While the chemo certainly had its downside, it wasn't as bad as I'd feared it might be. The main target of the chemo, as I understood it, was the large cell transformation more than the skin symptoms of the MF. It did succeed in ridding me of the lesion behind my ear that was the main symptom of the large cell transformation. My radiation treatment began 3 or 4 weeks after the conclusion of chemo. It was overseen at M. D. Anderson by Dr. Dabaja, and lasted for 8 weeks. It greatly reduced my MF skin conditions. With my blood and skin disease conditions all improved, my doctors cleared me to advance to the stem cell transplant. On Jan. 5, 2009, I was fitted with a central venous catheter just below my left collar bone to facilitate the many medications and treatments I will have to receive.