Today was my last appointment at NIH before day +100, but as one of my doctors pointed out, it was somewhat anti-climactic. For people who live out of town, of whom there are many at NIH, reaching day +100 in good health means they get to return home. I've been lucky enough to be at home since January, so its not as big a milestone for me.
I could be celebrating the last of my twice weekly NIH visits, but since I have a follow up appointment with the dermatologist on Monday, I'll be heading back two times next week as well. The rash I had on my face has cleared up somewhat. My face doesn't itch as much, and it looks to have cleared up around my jaw line. There is still a decent amount of the rash on my forehead and around my eyes. I have been itching more on my upper back, and have noticed some spots on my upper chest. The doctors haven't said definitively that it is Graft Versus Host Disease (GVHD), but the lead doctor has hinted that it might be.
In addition to the rash, the two doctors I saw today noticed some spots inside my cheeks that they think might be minor GVHD symptoms as well. So the plan is to add a dental visit as well to next week's schedule to get that looked at. If they suspect that either area is indeed a sign of GVHD, I'll probably have a skin biopsy in both areas so the sample can be tested.
Although the idea of GVHD scared me before the transplant, the doctors don't seem worried by what they see, and I'm not so worried either. The itching is only a minor irritant, and whatever they saw in my mouth hasn't bothered me at all.
One doctor also shared with me that my bone marrow biopsy from Monday showed I had about 50 to 60% bone marrow activity. She explained that bone marrow activity is usually 100 minus your age, so if I were completely healthy mine would be about 70 or a slight bit higher. She thought where I am now was good though.
As part of my day +100 testing I had an echocardiogram and a pulmonary functioning test. Both of the technicians who ran those tests said my heart and lungs look great. So nothing to worry about there. I also went to the eye doctor yesterday, and my prescription hasn't changed in the last year. So in terms of those three organs it doesn't look like there has been any negative effects of the chemotherapy and other drugs.
So the process goes on. My positive thinking is that if the rash and whatever mouth issue is going on are GVHD, then there is probably some more Graft Versus Tumor effect going on. At this point in the transplant protocol, the next scan would take place in three months. However, since I still have some disease in my body the transplant team wants me to have my next PET Scan in four weeks. So towards the end of April we will have another idea of how successfully the treatment is going.
Thursday, March 26, 2009
Monday, March 23, 2009
Day +95
Day +100 of the transplant process occurs later in the week, so I had a PET scan and bone marrow biopsy today. Both procedures went very well. It can be uncomfortable lieing motionless with your arms above your head for 45 minutes during the PET Scan. However, I was able to sleep well. I dreamt twice that the procedure was done and I was getting off of the machine, only to wake up and realized I was still strapped in. Kind of strange, but the dreaming made it feel like the procedure flew by.
The BMB was extremely easy. There is one doctor who is known by patients and staff at NIH for being great at performing these procedures. Last time around he oversaw a less experienced doctor perform mine. That hurt like hell and involved shooting pains running down both legs. Today he performed the procedure himself, and it was quick and almost painless. I was happy that both of these procedures were relatively easy today.
After the BMB Kate, my parents, and I waited for the lead doctor on the transplant team to speak with us. He shared the good news that there is only one lesion remaining on the PET Scan. This area of tumor activity has shrank in size and intensity since my last scan. The best news would obviously be no more cancer left in the body. However, hearing that the cancer is decreasing is still extremely satisfying news.
A regrowth of cancer cells likely would have led to more chemotherapy, radiation, or some other therapy. This decrease means I'll be able to continue with the transplant process as scheduled. This will be the last week of scheduled bi-weekly visits to NIH. That will be a welcome change to my schedule. It will also mean that the tapering of the immune suppressant drugs I'm on can continue. As those are tapered, the graft versus tumor effect on my remaining cancer cells should increase also.
With things going so well I asked the doctor what he thought about me returning to work. Unfortunately he wasn't as enthusiastic about that as he was about my progress. He would like me to remain out of work until I'm completely off of immune suppressants in about three months. Part of his concern is that my job entails I work with kids. With a new immune system, spending time around children isn't something the transplant team wants to see. This is extremely frustrating because I am feeling great on a daily basis. I know I have the energy to be back at work, and its boring to be around the house as much as I am.
Despite my disappointment about not getting the response I wanted about working, I still have to view things positively. Its not enjoyable, but I have to remind myself that ensuring my long term health is the most important thing going on right now.
Thank you to everybody who has been praying and wishing me well. The positive thoughts are working!
The BMB was extremely easy. There is one doctor who is known by patients and staff at NIH for being great at performing these procedures. Last time around he oversaw a less experienced doctor perform mine. That hurt like hell and involved shooting pains running down both legs. Today he performed the procedure himself, and it was quick and almost painless. I was happy that both of these procedures were relatively easy today.
After the BMB Kate, my parents, and I waited for the lead doctor on the transplant team to speak with us. He shared the good news that there is only one lesion remaining on the PET Scan. This area of tumor activity has shrank in size and intensity since my last scan. The best news would obviously be no more cancer left in the body. However, hearing that the cancer is decreasing is still extremely satisfying news.
A regrowth of cancer cells likely would have led to more chemotherapy, radiation, or some other therapy. This decrease means I'll be able to continue with the transplant process as scheduled. This will be the last week of scheduled bi-weekly visits to NIH. That will be a welcome change to my schedule. It will also mean that the tapering of the immune suppressant drugs I'm on can continue. As those are tapered, the graft versus tumor effect on my remaining cancer cells should increase also.
With things going so well I asked the doctor what he thought about me returning to work. Unfortunately he wasn't as enthusiastic about that as he was about my progress. He would like me to remain out of work until I'm completely off of immune suppressants in about three months. Part of his concern is that my job entails I work with kids. With a new immune system, spending time around children isn't something the transplant team wants to see. This is extremely frustrating because I am feeling great on a daily basis. I know I have the energy to be back at work, and its boring to be around the house as much as I am.
Despite my disappointment about not getting the response I wanted about working, I still have to view things positively. Its not enjoyable, but I have to remind myself that ensuring my long term health is the most important thing going on right now.
Thank you to everybody who has been praying and wishing me well. The positive thoughts are working!
Thursday, March 19, 2009
Day +91
Things just keep rolling along. Today is Day +91 of the transplant process, so I have just a little over one week left until I hit day +100. At that point the transplant team will hopefully start seeing me less frequently, and I can begin transitioning slowly back towards regular life.
The past week has been pretty good. My energy has stayed high, I've avoided feeling sick, and I'm feeling great. The only thing going on with my body is I broke out in what looks similar to acne. I've got little red spots from my shoulders up, and its a little annoying because it itches off and on. The doctors on Monday said it didn't appear to be a GVHD rash, but couldn't say exactly what it was. So I saw the dermatologist at NIH yesterday. He wasn't quite sure what it was either. He said that one of the drugs I'm on can cause acne, but that since I've been on the drug at higher levels for months now, It would be strange for it to appear now. So for right now the doctors aren't changing anything, and I'll just use some prescription cream to deal with it.
My appointment today was pretty easy. I had nothing but positives to report to the doctors, and they had nothing negative to report to me. I know my family likes to hear what my blood counts are, but sometimes I'm just fine knowing that things aren't a concern. So I didn't ask about my blood counts from Monday or today, but I assume everything is well. Whenever they are concerned they end up calling me.
On Monday I'll have my PET scan in the morning and a bone marrow biopsy in the early afternoon. So that will make for a long day at NIH. The lead doctor on the transplant team said he would meet with my family and I in the afternoon after he gets a chance to see the PET scan. So our prayers over the next few days will be for positive results from that scan. I'd love to hear that there are no signs of cancer remaining, but I am keeping in mind that this is a long process. As long as there are no signs of growth, I'll be happy with the results.
The past week has been pretty good. My energy has stayed high, I've avoided feeling sick, and I'm feeling great. The only thing going on with my body is I broke out in what looks similar to acne. I've got little red spots from my shoulders up, and its a little annoying because it itches off and on. The doctors on Monday said it didn't appear to be a GVHD rash, but couldn't say exactly what it was. So I saw the dermatologist at NIH yesterday. He wasn't quite sure what it was either. He said that one of the drugs I'm on can cause acne, but that since I've been on the drug at higher levels for months now, It would be strange for it to appear now. So for right now the doctors aren't changing anything, and I'll just use some prescription cream to deal with it.
My appointment today was pretty easy. I had nothing but positives to report to the doctors, and they had nothing negative to report to me. I know my family likes to hear what my blood counts are, but sometimes I'm just fine knowing that things aren't a concern. So I didn't ask about my blood counts from Monday or today, but I assume everything is well. Whenever they are concerned they end up calling me.
On Monday I'll have my PET scan in the morning and a bone marrow biopsy in the early afternoon. So that will make for a long day at NIH. The lead doctor on the transplant team said he would meet with my family and I in the afternoon after he gets a chance to see the PET scan. So our prayers over the next few days will be for positive results from that scan. I'd love to hear that there are no signs of cancer remaining, but I am keeping in mind that this is a long process. As long as there are no signs of growth, I'll be happy with the results.
Thursday, March 12, 2009
Day +84
I've got a good day going on after a really nice time yesterday. The weather was great yesterday, and I took advantage by running a bit with Kate. I definitely worked my muscles in a way that I haven't been used to in a while. So I'm fairly sore today, but its definitely a good sore. In addition to exercising for a couple of hours, I was active the rest of the day also. I had enough energy to do a good amount of work around the house, and I know Kate was appreciative.
Today I went in for my clinic appointment, and I was in and out in less than an hour. It feels good to be done with those type of appointments so quickly, but theres usually a suspicion that they'll find something to call me back to NIH with later. Well, I got a call from the transplant team and was told my neutrophils were at 18. When I told Kate 18, she had a shocked look on her face because she was thinking about .18. Nope...no need to worry. Thats an absolute neutrophil count of 18.0. The range for healthy neutrophils is somewhere between 3 and 8 I think. So 18 is plenty enough neutrophils for my immune system right now. So for now I don't have to give myself any more neupogen injections at home. I was scheduled to give them to myself every other day, but with my high neupogen count, that will be put off.
The high level of neutrophils is primarily caused by the neupogen injections, but my counts have never been that high before. Hopefully this means that my body's natural production is increasing as well. Kate noticed that I've been feeling a lot better since the IVIG infusion last week. Hopefully that has had a positive impact on my immune system, and my blood counts won't drop to the point of neutropenia again.
Today I went in for my clinic appointment, and I was in and out in less than an hour. It feels good to be done with those type of appointments so quickly, but theres usually a suspicion that they'll find something to call me back to NIH with later. Well, I got a call from the transplant team and was told my neutrophils were at 18. When I told Kate 18, she had a shocked look on her face because she was thinking about .18. Nope...no need to worry. Thats an absolute neutrophil count of 18.0. The range for healthy neutrophils is somewhere between 3 and 8 I think. So 18 is plenty enough neutrophils for my immune system right now. So for now I don't have to give myself any more neupogen injections at home. I was scheduled to give them to myself every other day, but with my high neupogen count, that will be put off.
The high level of neutrophils is primarily caused by the neupogen injections, but my counts have never been that high before. Hopefully this means that my body's natural production is increasing as well. Kate noticed that I've been feeling a lot better since the IVIG infusion last week. Hopefully that has had a positive impact on my immune system, and my blood counts won't drop to the point of neutropenia again.
Monday, March 9, 2009
Day +81
Things have been good over the weekend. I didn't have any fevers and felt great. Having nice weather for the first time in a few weeks was definitely a plus, and the family got to spend a lot of time outdoors. I did have to take some pain meds because of the back pain that comes with my neupogen shots, but thats not too big a deal.
At NIH today I didn't get the biopsy that the doctors told me they wanted. My lab results showed that my neutrophil count had risen significantly to 5.3, from .06 on Thursday. That makes the risk of infection a lot less likely, so its good to be out of the woods there.
The reason the doctors were thinking about pushing the bone marrow biopsy up to today was because I hadn't reacted to the neupogen shots last week. Since the shots apparently worked over the weekend, they decided to wait until the biopsy would be normally scheduled, which will be in two weeks. So I didn't have to deal with the pain today, but its still in the plans. Since I was taking the neupogen to create new neutrophil cells, the biopsy would likely show mostly new cells. The doctors hope by waiting a few weeks they will be able to get a more natural look at my bone marrow production, and hopefully see more mature blood cells.
Everything else seems to be good for now. My platelets bumped back up over 100, and my hemoglobin is over 10 for the first time in a while. The hemoglobin is especially good news in my mind, because the closer that gets to normal, the more energy I should have. With Isaiah at school today, Kate and I were able to take a quick bike ride this afternoon. I definitely had the energy and the lungs for it, but my leg muscles aren't in shape. Hopefully with better weather on the way, more outdoor activities will speed up my return to normal health.
At NIH today I didn't get the biopsy that the doctors told me they wanted. My lab results showed that my neutrophil count had risen significantly to 5.3, from .06 on Thursday. That makes the risk of infection a lot less likely, so its good to be out of the woods there.
The reason the doctors were thinking about pushing the bone marrow biopsy up to today was because I hadn't reacted to the neupogen shots last week. Since the shots apparently worked over the weekend, they decided to wait until the biopsy would be normally scheduled, which will be in two weeks. So I didn't have to deal with the pain today, but its still in the plans. Since I was taking the neupogen to create new neutrophil cells, the biopsy would likely show mostly new cells. The doctors hope by waiting a few weeks they will be able to get a more natural look at my bone marrow production, and hopefully see more mature blood cells.
Everything else seems to be good for now. My platelets bumped back up over 100, and my hemoglobin is over 10 for the first time in a while. The hemoglobin is especially good news in my mind, because the closer that gets to normal, the more energy I should have. With Isaiah at school today, Kate and I were able to take a quick bike ride this afternoon. I definitely had the energy and the lungs for it, but my leg muscles aren't in shape. Hopefully with better weather on the way, more outdoor activities will speed up my return to normal health.
Friday, March 6, 2009
Day +78
I had my usual appointment yesterday and like always I had nothing new to report and the doctors didn't have much to talk with me about. My white blood cells increased, but my neutrophils remained pretty low. Everything else looked good, and its pretty much more waiting to see whats going on with my body.
After the appointment I went ahead and got the IVIG that had been discussed on Monday. It was a baisc IV infusion pretty much like most I've had over the course of my treatment. I didn't have any issues with that, and it basically made for a long day. Hopefully that will help me combat any viruses that I come in contact with, and my neutrophil counts will stop dropping so dramatically.
Today I got a call from one of my nurses that the transplant team decided to move up by bone marrow biopsy from the end of the month to next Monday. My doctor wants to see the results of the biopsy sooner, in case there is any information to be gained from that which might explain my low neutrophil counts. So that gives me something painful to look forward to on Monday!
Everything else is going pretty well. Isaiah and Kate are doing great, and we are looking forward to some improved weather this weekend. I'm feeling good, but just need to keep on reminding myself to be patient with this process.
After the appointment I went ahead and got the IVIG that had been discussed on Monday. It was a baisc IV infusion pretty much like most I've had over the course of my treatment. I didn't have any issues with that, and it basically made for a long day. Hopefully that will help me combat any viruses that I come in contact with, and my neutrophil counts will stop dropping so dramatically.
Today I got a call from one of my nurses that the transplant team decided to move up by bone marrow biopsy from the end of the month to next Monday. My doctor wants to see the results of the biopsy sooner, in case there is any information to be gained from that which might explain my low neutrophil counts. So that gives me something painful to look forward to on Monday!
Everything else is going pretty well. Isaiah and Kate are doing great, and we are looking forward to some improved weather this weekend. I'm feeling good, but just need to keep on reminding myself to be patient with this process.
Tuesday, March 3, 2009
Day +74
I had an appointment this morning at NIH, and it was quicker to get over to Bethesda with a half foot of snow than it is on a morning with perfect weather. That was a nice surprise.
The only issue I had to report to the transplant team was that my cough hasn't gone away completely. Its better but I still cough a lot to get rid of congestion in the morning. The doctors listened to my lungs, and they sound completely clear, so thats good news. Everything else with my physical check up went well.
However, the results of my blood tests showed that my neutrophils had dropped once again. My absolute neutrophil count was a healthy 4.04 last Thursday, but had dropped to a meager .04 this morning. This occurred despite giving myself a neupogen shot on Friday in order to help keep my counts up.
So the doctors once again don't know what keeps causing my neutrophils to drop. I'll be taking the neupogen shots every day for now in order to raise my counts. The last two times this has happened I've ended up inpatient in the hospital with fevers. So far I am feeling great and haven't had an elevated temperature at all.
One theory that some of the doctors have shared is that I have been getting viruses that are subsequently slowing the production of neutrophils in my bone marrow. One doctor today brought up the idea of giving me Intravenous Immuoglobulin(IVIG). The IVIG is a type of blood product that contains antibodies from at least 1,000 different donors. What it would do is provide increased antibodies and allow my body to fight off these small viruses that they think are affecting me. The doctor who saw me today will consult with the rest of the transplant team, and I might receive the IVIG on Thursday.
So hopefully the neupogen shots increased my neutrophil count quickly and I don't get stuck with a fever which would require a stay at NIH. If my lousy neutrophil behavior is a result of these minor viruses, hopefully the IVIG will be a procedure that can get me over this hump in the process.
The only issue I had to report to the transplant team was that my cough hasn't gone away completely. Its better but I still cough a lot to get rid of congestion in the morning. The doctors listened to my lungs, and they sound completely clear, so thats good news. Everything else with my physical check up went well.
However, the results of my blood tests showed that my neutrophils had dropped once again. My absolute neutrophil count was a healthy 4.04 last Thursday, but had dropped to a meager .04 this morning. This occurred despite giving myself a neupogen shot on Friday in order to help keep my counts up.
So the doctors once again don't know what keeps causing my neutrophils to drop. I'll be taking the neupogen shots every day for now in order to raise my counts. The last two times this has happened I've ended up inpatient in the hospital with fevers. So far I am feeling great and haven't had an elevated temperature at all.
One theory that some of the doctors have shared is that I have been getting viruses that are subsequently slowing the production of neutrophils in my bone marrow. One doctor today brought up the idea of giving me Intravenous Immuoglobulin(IVIG). The IVIG is a type of blood product that contains antibodies from at least 1,000 different donors. What it would do is provide increased antibodies and allow my body to fight off these small viruses that they think are affecting me. The doctor who saw me today will consult with the rest of the transplant team, and I might receive the IVIG on Thursday.
So hopefully the neupogen shots increased my neutrophil count quickly and I don't get stuck with a fever which would require a stay at NIH. If my lousy neutrophil behavior is a result of these minor viruses, hopefully the IVIG will be a procedure that can get me over this hump in the process.
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