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.
Wednesday, June 17, 2009
Saturday, April 25, 2009
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 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.
Saturday, April 4, 2009
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.
Tuesday, March 31, 2009
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.
Monday, March 30, 2009
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!
Sunday, March 29, 2009
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.
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.
Friday, March 27, 2009
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.
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.
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