I did make it home on Sunday the 9th, after three and a half weeks at Huntsman Hospital. Of course, it's great to be here. I told the hospital staff that despite their great care, I really needed to be home to get well. And I am getting well.
Progress is slow, which is to be expected, although I am doing much better than after my first transplant, when I stayed in bed or on the couch in front of the TV for close to a month after coming home. I have been able to walk around the nearby park every day and to do a few light chores and projects around the house. Early on I had to stop and rest every few minutes from any physical activity that I was doing.
In my last post I talked about heart arrhythmias, and that's what has been holding me back. The slightest over-exertion causes one to kick in, sometimes making my heart beat too fast, other times too slow. Sometimes they were very debilitating, causing a great feeling of weakness, and the need to lie down before I fell down.
This Wednesday I went to see the University of Utah Hospital cardiologist assigned to me, Dr. Shean. He said I still had fluid around my heart (lingering pericarditis), but not enough to bother me, and that aside from the arrhythmias, my heart is fine. As to those, he proposed to do nothing at this time, and see if I can get well on my own, which approach I like. Otherwise the next steps are heart medicine and a pacemaker.
And I think I am getting better. This past week I have been able to walk faster and work harder and longer, with fewer and fewer episodes of arrhythmia. I even did a set of weights and ten sets of stairs. I did get arrhythmias but they were light and over quickly, and felt almost as if I could control them.
After the cardiologist, I went to see my oncologist, Dr. Zangari to find out how effective the transplant had been at reducing or eradicating the cancer. The good news is that, at least right now, I am in remission--cancer free. The tests could find no evidence of the disease in my body. The bad news is, and always has been, that the myeloma will come back. It always does. Because of this, and because I have high risk factors, I will go on maintenance chemo right away.
We were highly disappointed to learn that Dr. Zangari will be leaving Huntsman at the end of July to take a position at the Myeloma Institute for Research and Therapy in Arkansas. He is the main reason we came to Huntsman. We are quite anxious about who our oncologist will be, and if they really are a myeloma expert who can give me individualized help.
One last thing: I took a bad fall. We were leaving the hospital last Monday and I was texting while walking in the parking lot and fell over a concrete barrier. Both hands were full and I went down hard, scraping an ankle, both knees, a forearm, a hip, a shoulder, and my head. Fortunately, we were at the hospital, so we went back up the clinic and they fixed me right up, after a CT scan showed my head was OK and a transfusion of platelets to insure I didn't bleed out internally. I'm pretty scarred up, but there's no permanent damage.
So, we are settling into another "new normal" and life is good. Sometime in the future the myeloma will be back, but not today. Today belongs to us and we're making the best of it.
6.22.2013
6.08.2013
Almost There
It is 11 days since my last post and I'm happy to tell you I am much improved. I am out of that dark place I was in and almost back to normal. This is day +19 since my transplant and I am still here in Huntsman Cancer Hospital, although I just received news that I will be going home tomorrow.
I might normally have been home by now but for two reasons. First, I developed a common reaction called engraftment syndrome where the body overreacts to the re-implanted stem cells. The syndrome's two symptoms are fever and rash. They've kept me here to treat the rash and to make sure the fever I had doesn't come from a new bacterial or viral infection, rather than from the syndrome.
The other reason I'm still here is that I have engrafted quite slowly, that is, my re-implanted cells have been slow to take hold and start regrowing. This can be common with second transplants, like I'm going through, but it also could just be my own individual health and genetic make up. Nevertheless, my cells finally kicked in and are growing leaps and bounds.
Aside from my slow stem cells, I have progressed normally. I am eating and drinking enough and my vital signs are staying within acceptable ranges, although there is some concern about my heart. Being a runner and a biker I never thought I would have heart issues, but during the last two years either the cancer or the treatments have caused some problems. My heart is still strong; the issues are with the electrical system and the timing of heart beats (arrhythmia). My pulse can range--within a few hours--from the low 40's to the 130's with no apparent reason, without my doing anything. It's not dangerous at this point but the U of U cardiologists will continue to watch me, and perhaps suggest some ongoing maintenance treatment.
Hospital life is never desirable, but the staff here at Huntsman have been just wonderful at trying to make my time here as pleasant as possible. They have worked hard at filling my every need, watching over me, being cheerful and encouraging, and always acting very professionally. I owe them a lot.
My goal now is to go home and regain the strength I have lost by being cooped up here is this one room for over three weeks. Hopefully that's where my next post will be from--HOME! Deep and sincere thanks again to all who have visited, called, prayed, and otherwise supported and encouraged me. I love you all so much.
I might normally have been home by now but for two reasons. First, I developed a common reaction called engraftment syndrome where the body overreacts to the re-implanted stem cells. The syndrome's two symptoms are fever and rash. They've kept me here to treat the rash and to make sure the fever I had doesn't come from a new bacterial or viral infection, rather than from the syndrome.
The other reason I'm still here is that I have engrafted quite slowly, that is, my re-implanted cells have been slow to take hold and start regrowing. This can be common with second transplants, like I'm going through, but it also could just be my own individual health and genetic make up. Nevertheless, my cells finally kicked in and are growing leaps and bounds.
Aside from my slow stem cells, I have progressed normally. I am eating and drinking enough and my vital signs are staying within acceptable ranges, although there is some concern about my heart. Being a runner and a biker I never thought I would have heart issues, but during the last two years either the cancer or the treatments have caused some problems. My heart is still strong; the issues are with the electrical system and the timing of heart beats (arrhythmia). My pulse can range--within a few hours--from the low 40's to the 130's with no apparent reason, without my doing anything. It's not dangerous at this point but the U of U cardiologists will continue to watch me, and perhaps suggest some ongoing maintenance treatment.
Hospital life is never desirable, but the staff here at Huntsman have been just wonderful at trying to make my time here as pleasant as possible. They have worked hard at filling my every need, watching over me, being cheerful and encouraging, and always acting very professionally. I owe them a lot.
My goal now is to go home and regain the strength I have lost by being cooped up here is this one room for over three weeks. Hopefully that's where my next post will be from--HOME! Deep and sincere thanks again to all who have visited, called, prayed, and otherwise supported and encouraged me. I love you all so much.
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