Happy PET scans always make for good days!
I had another uneventful PET scan experience, and the doctor from the transplant team was quick to announce that the scan showed good results. He let us know that the tumor mass is stable to improving. Doctors tend to be conservative when speaking about cancer, and he admitted that calling things stable was conservative. Most likely the tumor area is slowly improving, which is what we were expecting.
After the last scan he reported that there were some areas in the lung that showed up in the PET, that were most likely caused by the bout of Pneumonia I had earlier in the year. On today's scan one of those spots had completely disappeared. Supposedly the radiologist who was viewing the PET with him asked if I had a recent infection without knowing my history. The other spots in the lung were again...stable to slightly improved. He felt very confident that those spots in the lungs were just showing inflammation and that the infection was lingering.
So the bottom line is that I am not cancer free, but that what is there is only minimal. Every scan without an increase in cancer activity marks progress. Without today's news the doctor wants me to consider to stay on my current regimen of immune suppressants. If I had no signs of cancer, the plan would be to put me on more immune suppressants to treat my GVHD. However, with the way things are now, I just have to deal with the GVHD and hope that there is also a Graft Versus Tumor effect occurring.
I'd be happy to not deal with the GVHD symptoms, but its better to live with them and without cancer. Thanks for all of the support, and I hope everybody enjoys their Memorial Day weekend.
Saturday, May 23, 2009
Thursday, May 21, 2009
Day +154
Been a while since I updated the blog, so I'll try to remember as much as I can in this post. Mother's Day was almost two weeks ago, and I had a great time with both Kate and my mother. Unfortunately that night my left eye started watering, and wouldn't stop until I fell asleep that night. When I woke up in the morning my eyelids were hard to open because I had dried tears caked in my eyelashes. I had been having a bit more crustiness when I woke in the morning, but the excessive watering and crustiness were both new. I went ahead and called NIH and got a quick appoointment the next day with the opthamologist. I was pretty down at this point, because I was worried about having the GVHD affecting my eyes as well.
I consider myself a pretty good patient, but I absolutely hate visiting eye doctors. I can't stand anything going near my eyes, and I wasn't looking forward to this visit. The first test the nurse had me do involved putting a tab in between my lower eyelids and my eyeball. That was uncomfortable, but I did relatively well by my standards. I had to do that twice, once with eye drops and once without.
Later I saw the opthamologist and she did an exam that was uncomfortable at times, however she had some decent news for me. The main concern with occular GVHD is dry eyes. Having dry eyes can lead to a lot of serious complications with eye sight, but apparently my eyes tear really well. From the examination the doctor didn't see any signs of infection, but she couldn't rule it out either. She explained that while the new immune system didn't appear to hurt the gland that produces water in the tears, it might be hurting the glands that produce oil. Without enough oil in the tears, they would evaporate quickly, and that was what was causing the crustiness around the eyes. She gave me an antibiotic for my eyes, and explained a few things to help keep the glands located near the eye lashes clean and effective. She told me that I would probably deal with this problem for about a week, but that she wasn't concerned about GVHD or an infection.
So I left that appointment in a much more positive mood, and the only thing left to do before heading out to Wisconsin was my Hickman removal. On Wednesday I went in to get the Hickman taken out, and I did that with a process that took about 20 minutes. I was numbed up pretty good, and there was some yanking and pulling by the doctor before it was all done. Its definitely been a great feeling to have the Hickman out. I don't have to worry about my movement at all, and I can jump into the shower again.
With the Hickman out, it was off to Wisconsin with Kate, Isaiah, and Matt. I drove the first 350 miles and felt pretty good doing that. My eyes started to water a bit, and that bothered me enough that I didn't want to drive any longer. That was really the last night that my eyes bothered me significantly, and they have been getting better since then.
The trip to Wisconsin was a lot of fun. Milwaukee was a fun city to hang out in, although we saw its good side without the sub-zero temperatures and several feet of snow.
I had an appointment with the dermatologist at NIH after driving back to Maryland. She felt my skin was more irritated compared to two weeks ago when she had seen me. She took a look at my mouth as well, and showed some concern about the GVHD. She called one of the doctors with the transplant team who explained to her that the team wanted to taper me further off of the immune suppressants because I still have evidence of disease. The dermatologist seems to think more immune suppressants are needed because of the progression of the GVHD, but that isn't an option until the cancer is gone. So until the PET scans show I am cancer free, it seems like I'll have to deal with the GVHD and the doctors will try to treat it topically. The dermatologist bumped me up from a moderate steroid to a strong steroid for the rash on my neck and chest. Since doing that just two days ago, I think I've noticed a difference already.
The next thing up was heading back to work. Yesterday was my first day returning to work, and I made it back again today. Things went well, and I was able to control my environment without letting anybody put their hands all over me or get stuck in any groups. I did meet with one student one on one, which felt good to do again, and also did some more administrative work to help out one of my superiors. I was pretty tired yesterday and ended up falling asleep when Isaiah did. I wasn't as tired as when I worked while going through chemo. However, I definitely realized that I'm not back to the energy level that I should have. It was good to be back though, and the kids and the staff made me feel good to be back.
So after a brutal two day work week I will take a day off from school tommorow to have a PET scan before the three day weekend. Its only been a month since my last scan, but I had my immune suppressants tapered afterwards. With the lower level of immune suppressants there will hopefully be some good results on this scan. As always...prayers and good thoughts are appreciated, and hopefully I'll have some good news to report tommorow evening.
I consider myself a pretty good patient, but I absolutely hate visiting eye doctors. I can't stand anything going near my eyes, and I wasn't looking forward to this visit. The first test the nurse had me do involved putting a tab in between my lower eyelids and my eyeball. That was uncomfortable, but I did relatively well by my standards. I had to do that twice, once with eye drops and once without.
Later I saw the opthamologist and she did an exam that was uncomfortable at times, however she had some decent news for me. The main concern with occular GVHD is dry eyes. Having dry eyes can lead to a lot of serious complications with eye sight, but apparently my eyes tear really well. From the examination the doctor didn't see any signs of infection, but she couldn't rule it out either. She explained that while the new immune system didn't appear to hurt the gland that produces water in the tears, it might be hurting the glands that produce oil. Without enough oil in the tears, they would evaporate quickly, and that was what was causing the crustiness around the eyes. She gave me an antibiotic for my eyes, and explained a few things to help keep the glands located near the eye lashes clean and effective. She told me that I would probably deal with this problem for about a week, but that she wasn't concerned about GVHD or an infection.
So I left that appointment in a much more positive mood, and the only thing left to do before heading out to Wisconsin was my Hickman removal. On Wednesday I went in to get the Hickman taken out, and I did that with a process that took about 20 minutes. I was numbed up pretty good, and there was some yanking and pulling by the doctor before it was all done. Its definitely been a great feeling to have the Hickman out. I don't have to worry about my movement at all, and I can jump into the shower again.
With the Hickman out, it was off to Wisconsin with Kate, Isaiah, and Matt. I drove the first 350 miles and felt pretty good doing that. My eyes started to water a bit, and that bothered me enough that I didn't want to drive any longer. That was really the last night that my eyes bothered me significantly, and they have been getting better since then.
The trip to Wisconsin was a lot of fun. Milwaukee was a fun city to hang out in, although we saw its good side without the sub-zero temperatures and several feet of snow.
I had an appointment with the dermatologist at NIH after driving back to Maryland. She felt my skin was more irritated compared to two weeks ago when she had seen me. She took a look at my mouth as well, and showed some concern about the GVHD. She called one of the doctors with the transplant team who explained to her that the team wanted to taper me further off of the immune suppressants because I still have evidence of disease. The dermatologist seems to think more immune suppressants are needed because of the progression of the GVHD, but that isn't an option until the cancer is gone. So until the PET scans show I am cancer free, it seems like I'll have to deal with the GVHD and the doctors will try to treat it topically. The dermatologist bumped me up from a moderate steroid to a strong steroid for the rash on my neck and chest. Since doing that just two days ago, I think I've noticed a difference already.
The next thing up was heading back to work. Yesterday was my first day returning to work, and I made it back again today. Things went well, and I was able to control my environment without letting anybody put their hands all over me or get stuck in any groups. I did meet with one student one on one, which felt good to do again, and also did some more administrative work to help out one of my superiors. I was pretty tired yesterday and ended up falling asleep when Isaiah did. I wasn't as tired as when I worked while going through chemo. However, I definitely realized that I'm not back to the energy level that I should have. It was good to be back though, and the kids and the staff made me feel good to be back.
So after a brutal two day work week I will take a day off from school tommorow to have a PET scan before the three day weekend. Its only been a month since my last scan, but I had my immune suppressants tapered afterwards. With the lower level of immune suppressants there will hopefully be some good results on this scan. As always...prayers and good thoughts are appreciated, and hopefully I'll have some good news to report tommorow evening.
Thursday, May 7, 2009
Day +140
Today was a clinic day, and things went pretty well. The doctor I saw today let me know that she caught the virus I had a few weeks ago. She felt pretty certain I just had allergies, and then BOOM...she got what I had. She was feeling better though, and so am I.
There is one thing bothering me, and that is my mouth. I've had the chronic GVHD of the mouth and skin for a while now. The skin doesn't bother me as much, but the oral GVHD can be a pain in the butt when it flairs up. I saw the dentist last week and her exam showed that my mouth cleared up a lot since starting a steroid ointment. She reccomended that I start using the ointment every other day rather than twice a day since my mouth was looking so good. A week later I am having a bit of trouble pronouncing my words because the ulcers under my tongue have flared back up. So I am resuming the twice a day use of the ointment for now, and hopefully it will clear up quickly again.
My skin is still discolored, mostly in areas that I've severely burned in the past...face, neck, shoulders, and chest. Last week it itched a lot more and looked a deep shade of red. The dermatologist at NIH started me on a steroid cream for my skin, and the itching has subsided while the discoloration is now a healthier looking pink. At this point my skin doesn't bother me. The biggest nuisance is having to avoid a lot of sun exposure. Thats probably something I'll have to do for a while, so long sleeve shirts, SPF 60, and staying in during the middle of the day will stick around for a bit.
The next couple of weeks should be pretty exciting for me. Next week Kate, my brother Matt, Isaiah, and I will drive from DC out to Milwaukee for other brother Tim's graduation from Marquette. The Docs are on board with that, and I've been told it will be fine to skip my appointment next week for us to get an earlier start. Before we head out, I might also get my Hickman line removed. So a week from now I will likely be on my first trip greater than 50 miles from home since pre-relapse last July. Having the Hickman line out will be a big comfort, and I'll look forward to jumping into the shower again, rather than having to look in the mirror and fuss with the lines and an aquaguard.
Our plan is to arrive back from Wisconsin on Tuesday the 19th, and Wednesday the 20th will be my first day back at work! It will be fun to get back to a normal routine for both Kate and I, even if it will only last until the end of school in DC in mid-June. If all that isn't enough excitement, I have a PET scan that Friday. I guess I look forward to PET scans, although anxious might be a better way to describe how Kate and my mom feel leading up to those scans. Although the news wasn't bad last time around, the PET scan results were somewhat disappointing. Hopefully, we are heading to some more positive news with that scan in a few weeks.
There is one thing bothering me, and that is my mouth. I've had the chronic GVHD of the mouth and skin for a while now. The skin doesn't bother me as much, but the oral GVHD can be a pain in the butt when it flairs up. I saw the dentist last week and her exam showed that my mouth cleared up a lot since starting a steroid ointment. She reccomended that I start using the ointment every other day rather than twice a day since my mouth was looking so good. A week later I am having a bit of trouble pronouncing my words because the ulcers under my tongue have flared back up. So I am resuming the twice a day use of the ointment for now, and hopefully it will clear up quickly again.
My skin is still discolored, mostly in areas that I've severely burned in the past...face, neck, shoulders, and chest. Last week it itched a lot more and looked a deep shade of red. The dermatologist at NIH started me on a steroid cream for my skin, and the itching has subsided while the discoloration is now a healthier looking pink. At this point my skin doesn't bother me. The biggest nuisance is having to avoid a lot of sun exposure. Thats probably something I'll have to do for a while, so long sleeve shirts, SPF 60, and staying in during the middle of the day will stick around for a bit.
The next couple of weeks should be pretty exciting for me. Next week Kate, my brother Matt, Isaiah, and I will drive from DC out to Milwaukee for other brother Tim's graduation from Marquette. The Docs are on board with that, and I've been told it will be fine to skip my appointment next week for us to get an earlier start. Before we head out, I might also get my Hickman line removed. So a week from now I will likely be on my first trip greater than 50 miles from home since pre-relapse last July. Having the Hickman line out will be a big comfort, and I'll look forward to jumping into the shower again, rather than having to look in the mirror and fuss with the lines and an aquaguard.
Our plan is to arrive back from Wisconsin on Tuesday the 19th, and Wednesday the 20th will be my first day back at work! It will be fun to get back to a normal routine for both Kate and I, even if it will only last until the end of school in DC in mid-June. If all that isn't enough excitement, I have a PET scan that Friday. I guess I look forward to PET scans, although anxious might be a better way to describe how Kate and my mom feel leading up to those scans. Although the news wasn't bad last time around, the PET scan results were somewhat disappointing. Hopefully, we are heading to some more positive news with that scan in a few weeks.
Saturday, April 25, 2009
Day +127
Yesterday was one of those important days when I have to get a PET scan to check on the progress of my treatment. The day started out pretty normal with my usual clinic appointment. I felt the GVHD I've been experiencing hadn't really changed much, and I was feeling pretty good after the coughing and runny nose from the previous week. The doctor who saw me shared that the virus I had last week was adeno virus. She was surprised that I was feeling so well, because she said it knocks most people off of their feet. While I did feel less energy than normal, I was still pretty active over the last week. Must be good news that I felt reasonably well despite that virus.
The doctor also examined my mouth and skin for GVHD, and felt my mouth had improved over the last week. My mouth is feeling better, and its nice to have her opinion that it is visually improved as well. My skin is pretty splotchy on my upper body, especially on my neck. I don't feel the desire to itch that much, but its definitely noticeable. I'll have a biopsy on Monday with the dermatologist.
After my clinic appointment I went to the dentist to have an oral biopsy. I filled out a few quick surveys about my mouth, the dentist examined the GVHD in my mouth, and then took a snip from inside my cheek. The site of the biopsy bled for a bit while I bit down on some gauze. However, a day later I haven't even noticed where it was taken from. The dentist wanted me to pay particular attention to under my tongue while applying the ointment to treat the GVHD. Apparently the rest of my mouth doesn't look so bad.
Then came the PET scan which has become very commonplace. I was sitting with my mother before the scan, and counted 11 PETs that I've had since this whole process began almost two years ago. It was uneventful, and I went to the day hospital to wait for my doctors to report back on the results. My parents and I waited a while, and two of my doctors eventually came with a not so pleasant look on the lead doctor's face.
Don't get too worried. He didn't really have bad news, but was kind of upset that he hadn't been able to view the results of the scan before meeting with us. He had a hectic day with the usual outpatient clinic in the morning, as well as duties with his in-patient rotation as well. When he went to view the scan, the radiologist had already left for the day. He was able to tell us what the preliminary report had stated, but not what his own opinion was from the scan. The radiologist's report showed a small uptake in the chest. Its always disheartening to hear about any uptake on a PET scan, but the doctor was not too worried because my recent respiratory virus could have lead to an increase in activity in the lung. He also shared that the CT scan I had last week when I came in with the symptoms of the virus had not shown any growth in the tumor mass. He was pretty confident that this wasn't any cancerous growth, but he could not say that with certainty because of the uptake on the PET.
So the doctor called back today after viewing the PET scan himself. His opinion was that at worst...the tumor mass had stayed the same. Yesterday's scans showed three other spots that had increased activity, although their SUVs were very low. He didn't think these areas were cancerous, but he wanted to compare these spots to PET scans from back in 2008. He was unable to do that today because the files are too large to be kept readily available on computers.
So what does all of this mean?The plan for now is to continue to taper the immune suppressant drugs I am on. This decision is standard for the protocol. What the taper will do will allow my immune system to fight the remaining tumor cells a bit more effectively. The drawback to this is the potential for more Graft Versus Host Disease. If there was a clear decrease in cancer cells on the PET then the transplant team might have decided to keep my current levels of immune suppressant drugs the same. However, the doctors feel the increased graft versus tumor effect is worth risking a greater chance of GVHD.
If there had been clear growth of the cancerous cells, the doctors would have quickened the tapering process, exposing me to greater risk of GVHD complications while also giving my immune system the maximum ability to fight the cancer cells. So for now I am taking a lower dose of the immune suppressant drugs, and I'll have to be even more careful to monitor my GVHD. I'll have another PET scan in a month to see how things have progressed on this lower level of immune suppression.
All of this information can seem intense, but the bottom line is that I am still doing well. There is no regrowth, and while the progress isn't as quick as I would like, it is still being made. There is a constant need to remind myself that this is a long process and that the result we want will eventually come.
Some good news is that my doctor had no problems with my plans to visit Milwaukee for my brother Tim's graduation next month! That is very important to me, so I am happy for that. He is also supportive of me returning to work, and I anticipate that I'll be getting back to work at some point in May. Those are two very tangible events that I have to look forward to, which is a huge blessing. Today is Kate's birthday, so that is another reason to celebrate. She and I continue to get old, and we are both happy that I'll be healthy enough to celebrate tommorow.
The doctor also examined my mouth and skin for GVHD, and felt my mouth had improved over the last week. My mouth is feeling better, and its nice to have her opinion that it is visually improved as well. My skin is pretty splotchy on my upper body, especially on my neck. I don't feel the desire to itch that much, but its definitely noticeable. I'll have a biopsy on Monday with the dermatologist.
After my clinic appointment I went to the dentist to have an oral biopsy. I filled out a few quick surveys about my mouth, the dentist examined the GVHD in my mouth, and then took a snip from inside my cheek. The site of the biopsy bled for a bit while I bit down on some gauze. However, a day later I haven't even noticed where it was taken from. The dentist wanted me to pay particular attention to under my tongue while applying the ointment to treat the GVHD. Apparently the rest of my mouth doesn't look so bad.
Then came the PET scan which has become very commonplace. I was sitting with my mother before the scan, and counted 11 PETs that I've had since this whole process began almost two years ago. It was uneventful, and I went to the day hospital to wait for my doctors to report back on the results. My parents and I waited a while, and two of my doctors eventually came with a not so pleasant look on the lead doctor's face.
Don't get too worried. He didn't really have bad news, but was kind of upset that he hadn't been able to view the results of the scan before meeting with us. He had a hectic day with the usual outpatient clinic in the morning, as well as duties with his in-patient rotation as well. When he went to view the scan, the radiologist had already left for the day. He was able to tell us what the preliminary report had stated, but not what his own opinion was from the scan. The radiologist's report showed a small uptake in the chest. Its always disheartening to hear about any uptake on a PET scan, but the doctor was not too worried because my recent respiratory virus could have lead to an increase in activity in the lung. He also shared that the CT scan I had last week when I came in with the symptoms of the virus had not shown any growth in the tumor mass. He was pretty confident that this wasn't any cancerous growth, but he could not say that with certainty because of the uptake on the PET.
So the doctor called back today after viewing the PET scan himself. His opinion was that at worst...the tumor mass had stayed the same. Yesterday's scans showed three other spots that had increased activity, although their SUVs were very low. He didn't think these areas were cancerous, but he wanted to compare these spots to PET scans from back in 2008. He was unable to do that today because the files are too large to be kept readily available on computers.
So what does all of this mean?The plan for now is to continue to taper the immune suppressant drugs I am on. This decision is standard for the protocol. What the taper will do will allow my immune system to fight the remaining tumor cells a bit more effectively. The drawback to this is the potential for more Graft Versus Host Disease. If there was a clear decrease in cancer cells on the PET then the transplant team might have decided to keep my current levels of immune suppressant drugs the same. However, the doctors feel the increased graft versus tumor effect is worth risking a greater chance of GVHD.
If there had been clear growth of the cancerous cells, the doctors would have quickened the tapering process, exposing me to greater risk of GVHD complications while also giving my immune system the maximum ability to fight the cancer cells. So for now I am taking a lower dose of the immune suppressant drugs, and I'll have to be even more careful to monitor my GVHD. I'll have another PET scan in a month to see how things have progressed on this lower level of immune suppression.
All of this information can seem intense, but the bottom line is that I am still doing well. There is no regrowth, and while the progress isn't as quick as I would like, it is still being made. There is a constant need to remind myself that this is a long process and that the result we want will eventually come.
Some good news is that my doctor had no problems with my plans to visit Milwaukee for my brother Tim's graduation next month! That is very important to me, so I am happy for that. He is also supportive of me returning to work, and I anticipate that I'll be getting back to work at some point in May. Those are two very tangible events that I have to look forward to, which is a huge blessing. Today is Kate's birthday, so that is another reason to celebrate. She and I continue to get old, and we are both happy that I'll be healthy enough to celebrate tommorow.
Friday, April 17, 2009
Day +119
Spent a little more time at NIH this week than I was planning on. I developed a cough and runny nose earlier in the week, and it wasn't really getting better after a day or so. On Tuesday I went in to NIH and was seen by the PA. I chekced out alright, but she had blood drawn and some other quick tests run. She sent me home with some cough medicine and Zyrtec, and wanted me to come back the next day for a CT scan.
Wednesday's CT scan showed that my lungs were pretty clear and that there was some irritation in my sinuses. However, the PA and one of my doctors noted that there wasn't any pus, which means it likely was not sinusitis. Their opinion was that I was dealing with allergies.
After those two visits this week I went to my scheduled appointment yesterday. While I was there, the results from one of Tuesday's tests came back that showed I had a respiratory virus. So I guess it was something else besides simple allergies. They don't know what type of virus it is yet, and they haven't changed my treatment at all. For now they just want me to wear masks if I am out in public, and to monitor my temperature for fevers a bit more carefully than usual.
The other issues I've been dealing with are the minor GVHD symptoms in my mouth and skin. I've noticed my skin clearing up and I'm not itching that much compared to last week. So I reported that I thought things were clearing up, only to have the doctors say they thought it looked worse. Hmm...this might be one of the instances when I trust my memory more than thiers. The acne-like rash is gone, but they were concerned about some discoloration of the skin. I guess I'll continue to use the creams the dermatologist prescribed, and I'll be cautious about my sun exposure. However, I'm feeling positive as long as I'm not itching that much.
The sores in my mouth the previous week stopped bothering me two days after taking the ointment prescribed by the dentist. My mouth feels a lot better, but again one of the doctors thought my mouth looked worse. What I feel is obviously most important to me, but I figure the doctors are more comfortable with what they can personally observe. A dental consult was set up yesterday morning so they could take a biopsy and verify the GVHD. The dentist examined my mouth and felt it looked better when comared to the photos that were taken of my mouth a week earlier by the other dentist. She opted not to take a biopsy, and left that up to the dentist who I will see for a follow up in two weeks. So not much was accomplished with the whole process.
The good news is that my blood counts are still coming back looking excellent. The minor GVHD isn't bothering me right now, and thats fine by me. Next week I'll have another PET scan to see how the cancer in my body is acting. Those results are always big news, but until then I guess things will just go on as usual.
Wednesday's CT scan showed that my lungs were pretty clear and that there was some irritation in my sinuses. However, the PA and one of my doctors noted that there wasn't any pus, which means it likely was not sinusitis. Their opinion was that I was dealing with allergies.
After those two visits this week I went to my scheduled appointment yesterday. While I was there, the results from one of Tuesday's tests came back that showed I had a respiratory virus. So I guess it was something else besides simple allergies. They don't know what type of virus it is yet, and they haven't changed my treatment at all. For now they just want me to wear masks if I am out in public, and to monitor my temperature for fevers a bit more carefully than usual.
The other issues I've been dealing with are the minor GVHD symptoms in my mouth and skin. I've noticed my skin clearing up and I'm not itching that much compared to last week. So I reported that I thought things were clearing up, only to have the doctors say they thought it looked worse. Hmm...this might be one of the instances when I trust my memory more than thiers. The acne-like rash is gone, but they were concerned about some discoloration of the skin. I guess I'll continue to use the creams the dermatologist prescribed, and I'll be cautious about my sun exposure. However, I'm feeling positive as long as I'm not itching that much.
The sores in my mouth the previous week stopped bothering me two days after taking the ointment prescribed by the dentist. My mouth feels a lot better, but again one of the doctors thought my mouth looked worse. What I feel is obviously most important to me, but I figure the doctors are more comfortable with what they can personally observe. A dental consult was set up yesterday morning so they could take a biopsy and verify the GVHD. The dentist examined my mouth and felt it looked better when comared to the photos that were taken of my mouth a week earlier by the other dentist. She opted not to take a biopsy, and left that up to the dentist who I will see for a follow up in two weeks. So not much was accomplished with the whole process.
The good news is that my blood counts are still coming back looking excellent. The minor GVHD isn't bothering me right now, and thats fine by me. Next week I'll have another PET scan to see how the cancer in my body is acting. Those results are always big news, but until then I guess things will just go on as usual.
Thursday, April 9, 2009
Day +112
Its been a good week and I'm continuing to do well. I'm home alone right now, and I think thats a sign of my progress. Kate and Isaiah took a trip up to her home in New York this week, which is great since she hasn't been able to get back there in a long time because of this situation. Having my health in a place where it doesn't feel uncomfortable for me to be on my own is a great thing.
So I had a dental appointment at NIH this morning at 9:00. That was a good thing, because the regular clinic visit was sped up to fit me in, and there wasn't a lot of waiting around. The rash on my face, chest, and back continued to clear up and its hard to really see it now. I explained that I do continue to itch at times, and occasionally have a sensation on my skin that feels like pin pricks. Both of these issues are around my chest and upper back, so they are in the same spots I had some of the rash earlier. The doctor gave my skin a good look, but really couldn't see much.
The other sign of GVHD that the transplant team had noticed was in my mouth. My mouth has felt dry at times over the past week, but I probably wouldn't have even noticed it if I hadn't been aware to notice it. I am definitely aware of a couple of sores that have developed under my tongue. One doctor felt the inside of my cheek was improved, so she thought it was somewhat good that my dental consult was today. Having the sores gives the dentist something a little better to look at.
So the dentist played around inside my mouth and took a bunch of pictures to document what it looks like. She explained that both the inside of the cheek and the sores under the tongue look like minor GVHD. She noted that I had a lot of saliva and that my gums appeared in good shape. Those were two positives in terms of the GVHD. I was prescribed a steroid cream to apply to the affected areas. She felt that should do a good job of clearing things up, and I'll follow up with her in three weeks.
Other than the issues that point to some GVHD, I seem to be doing great. My neutrophils and the rest of my blood work came back normal. My energy is up and I've got no complaints at all right now. Thanks to everybody for their recent support, and I hope everybody enjoys their Easter weekend coming up!
So I had a dental appointment at NIH this morning at 9:00. That was a good thing, because the regular clinic visit was sped up to fit me in, and there wasn't a lot of waiting around. The rash on my face, chest, and back continued to clear up and its hard to really see it now. I explained that I do continue to itch at times, and occasionally have a sensation on my skin that feels like pin pricks. Both of these issues are around my chest and upper back, so they are in the same spots I had some of the rash earlier. The doctor gave my skin a good look, but really couldn't see much.
The other sign of GVHD that the transplant team had noticed was in my mouth. My mouth has felt dry at times over the past week, but I probably wouldn't have even noticed it if I hadn't been aware to notice it. I am definitely aware of a couple of sores that have developed under my tongue. One doctor felt the inside of my cheek was improved, so she thought it was somewhat good that my dental consult was today. Having the sores gives the dentist something a little better to look at.
So the dentist played around inside my mouth and took a bunch of pictures to document what it looks like. She explained that both the inside of the cheek and the sores under the tongue look like minor GVHD. She noted that I had a lot of saliva and that my gums appeared in good shape. Those were two positives in terms of the GVHD. I was prescribed a steroid cream to apply to the affected areas. She felt that should do a good job of clearing things up, and I'll follow up with her in three weeks.
Other than the issues that point to some GVHD, I seem to be doing great. My neutrophils and the rest of my blood work came back normal. My energy is up and I've got no complaints at all right now. Thanks to everybody for their recent support, and I hope everybody enjoys their Easter weekend coming up!
Friday, April 3, 2009
Day +105
The past week has been another good one. On Monday I had a dermatology appointment, and by that point my rash had subsided considerably. It still itches occassionally, but the dermatologist thought it had improved. He did prescribe an antibacterial cream to go with the steroid cream already prescribed. However, he wasn't overly concerned, and I'll continue with treatment as usual.
Today my doctor remarked about how the rash had cleared up. Thats a good sign, but he also noted the inside of my mouth looked like minor GVHD. They had wanted a dental consult this past week, but the appointment wasn't made. It'll be scheduled for next week, when they will probably take a biopsy from inside my mouth to check the tissue. I haven't felt any discomfort in my mouth, but its apparently obvious to the doctors. They also took a few swabs of my inner cheek in order to check for any fungal or viral infections.
Other than that issue things appeared fine from the doctor's perspective. My blood results look good, and I've had nothing negative to report. My doctor wants to wait until my immune-suppressant drugs are tapered again before removing my hickman line. That decision will come in two weeks, so that will be another little thing to look forward to.
Some good news is that I spoke with the principal at my job, and he is willing to try and help me return to work with a shift in my responsibilities. He is willing to help me find tasks that involve support of the program without direct student involvement, and limiting my interactions with students to controlled, one on one situations. I shared this with my doctor today and he was happy to hear this news. When I initially brought up my desire to return to work last week with my doctor, he seemed pretty hesitant about it. Today I got the feeling that he was sympathetic to my need to return to work, and was happy that my supervisor and I were creating a plan that would allow me to better control my work environment.
The principal is trying to find out details from human resources about what I need to do to reenter the system. I'm not sure of a time frame for when things will work out, but I feel that the process is moving forward.
In addition to all of the good news with my health, I turned 27 this week. Twenty six was a pretty intense year, but its a blessing to be here for my 27th. It was also great to be able to celebrate my birthday without feeling ill or exhausted.
Today my doctor remarked about how the rash had cleared up. Thats a good sign, but he also noted the inside of my mouth looked like minor GVHD. They had wanted a dental consult this past week, but the appointment wasn't made. It'll be scheduled for next week, when they will probably take a biopsy from inside my mouth to check the tissue. I haven't felt any discomfort in my mouth, but its apparently obvious to the doctors. They also took a few swabs of my inner cheek in order to check for any fungal or viral infections.
Other than that issue things appeared fine from the doctor's perspective. My blood results look good, and I've had nothing negative to report. My doctor wants to wait until my immune-suppressant drugs are tapered again before removing my hickman line. That decision will come in two weeks, so that will be another little thing to look forward to.
Some good news is that I spoke with the principal at my job, and he is willing to try and help me return to work with a shift in my responsibilities. He is willing to help me find tasks that involve support of the program without direct student involvement, and limiting my interactions with students to controlled, one on one situations. I shared this with my doctor today and he was happy to hear this news. When I initially brought up my desire to return to work last week with my doctor, he seemed pretty hesitant about it. Today I got the feeling that he was sympathetic to my need to return to work, and was happy that my supervisor and I were creating a plan that would allow me to better control my work environment.
The principal is trying to find out details from human resources about what I need to do to reenter the system. I'm not sure of a time frame for when things will work out, but I feel that the process is moving forward.
In addition to all of the good news with my health, I turned 27 this week. Twenty six was a pretty intense year, but its a blessing to be here for my 27th. It was also great to be able to celebrate my birthday without feeling ill or exhausted.
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