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.