After my appointment last Tuesday, I returned to NIH on Friday for the doctors to check on my GVHD symptoms and discuss the next step in treatment. My Dad was able to come to the meeting as well, with some questions he had for the doctors. The meeting was in the afternoon and I was pretty exhausted at that point. My fatigue seemed to be getting worse the previous few days, and my mouth was irritating me as much as ever. Not only was I still having trouble swallowing, but I was developing sores on the top of my tongue that made putting anything in my mouth, even room temperature water, uncomfortable.
So the nurse practicioner I saw on Tuesday initially thought I looked worse when she saw me Friday. She had me weighed and I had lost two and a half pounds in the three days since my last visit. This is my lowest weight since I was first diagnosed back in September 2007. In the last three weeks I lost thirteen pounds, which is more than a pound every two days. I think its safe to say I wasn't heading down a healthy path.
When the doctor saw that I wasn't rebounding in the last few days he decided it was trime to start the systemic treatment with Prednisone. I was prepared for this and it was a relief to know that I would be getting some relief. My father asked about losing the graft versus tumor effect when starting the Prednisone, which was a concern of mine as well. The doctor explained that statistics show an improvement in graft versus tumor effect with mild GVHD, but that there is no correlation between greater graft versus tumor effect and more severe GVHD. Since I have already had the minor GVHD symptoms, his thought was that I likely already received as much of the graft versus tumor help as I can get. This was a relief to my father and I to hear, and made it clear that there really would be no reason to not start the Prednisone treatment at this time.
My father brought up his thought that more tumor-fighting techniques could be used to help eliminate the tumor because of its tough nature and the aggressiveness with which it came back last year. He brought up the idea of radiation with the doctor, who did not rule that out as a possibility in the future. Most patients who have a mediastinal lymphoma receive radiation after their initial chemotherapy. I did not receive this after chemotherapy because the original study I was in was testing if the therapy I was given would eliminate the need for radiation. The idea of radiation certainly isn't pleasing, but there are plenty of people who have been through it and are doing well. If that is something I need to have done in order to improve my chances of living cancer free, then it would be worthwhile. For now the doctor wants to focus on improving my GVHD symptoms, and possibly thinking about radiation further down the line after some more scans.
So in addition to the Prednisone the doctors gave me some morphine to help with the pain of swallowing and some encouragement to keep nourishing myself despite the discomfort. I started the Prednisone Friday evening, so while I write this I have only taken three doses of it. Its pretty encouraging though that Kate has already noticed an improvement in how I appear to feel. I feel its made a big difference already as well. The most obvious sign that I've noticed is that my skin rash looks better. I had a rash on the back of my hands that were raised purplish/reddish bumps, and those are barely noticeable now. My throat feels better although it is still uncomfortable and occasionally painful to swallow. Taking the morphine before meals seems to help a little bit. My fatigue has also seemed to improve, although some of that might be explained by the energy boost that Prednisone tends to give you.
So I will be interested to see how I feel as I continue to take the Prednisone. Returning to a more normal state would be great, and keeping the GVHD from giving me further problems is the most important issue right now.
Sunday, June 14, 2009
Tuesday, June 9, 2009
Day +173
I continue to work and this past Friday was the first payday since I've been back. The check came in the mail with a whopping $13.73 made out in my name! Well...it was only two days worth of work, so it wasn't quite a full paycheck. However, even when I am receiving my full pay checks, they will not be their usual amounts for a while. When I took medical leave in December, I elected to continue with our health insurance through work so Isaiah and Kate would still be covered. The options we were given were to either pay as we go or to incur a debt. Since we would be short on money for other bills anyways, we decided to incur the debt, which would then be deducted when I started receiving pay again. About six months of health insurance premiums is a good amount of money, so the debt won't be paid off right away. I was expecting the full amount of my pay check to go towards the debt, but I guess somebody felt I needed that thirteen dollars for something. I'll have to check with payroll about how long it will take to pay off the health insurance debt, but finances are still an issue despite being back to work. At least I can take solace in knowing that avoiding the insurance system and getting my care at NIH has helped our family immensely when it comes to money.
On to the health stuff, I was given an antibiotic last week for a bacterial infection, and it seemed to clear up my congestion pretty well. The members of the team I met with last week were hopeful that when that cleared up that my swallowing might improve, but that wasn't to be. My throat feels a little better, but it is still painful to swallow. I lost another four pounds this week, so I'm still having a hard time with eating. The GVHD on my skin and in my mouth has been pretty stable though. Any changes with those have been pretty minor. However, the GVHD has been getting worse below the belt. I met with a couple of infectious disease doctors today who shared that the problems there aren't the results of any infections. One of the doctors from the transplant team took a look at what is going on and stated that it looked like GVHD. Dermatology has been trying to help me out with that, but nothing seems to be solving the issue.
This doctor from the transplant team seems to feel pretty strongly that its time to put me on prednisone. This would be the systemic steroid that would clear up the GVHD symptoms relatively quickly. He explained that my GVHD isn't serious at this point, but that he doesn't like where its heading. I'd be relieved to start the prednisone and to have these symptoms improve. However, the prednisone would decrease the potential graft versus tumor effect, and there is a small fear in the back of my head that it might be best to hold off on it longer. However, I also might be fine and no growth would occur if I started prednisone now. Its impossible to know what will happen with cancer. Right now though the improvement in quality of living would definitely be welcomed.
On to the health stuff, I was given an antibiotic last week for a bacterial infection, and it seemed to clear up my congestion pretty well. The members of the team I met with last week were hopeful that when that cleared up that my swallowing might improve, but that wasn't to be. My throat feels a little better, but it is still painful to swallow. I lost another four pounds this week, so I'm still having a hard time with eating. The GVHD on my skin and in my mouth has been pretty stable though. Any changes with those have been pretty minor. However, the GVHD has been getting worse below the belt. I met with a couple of infectious disease doctors today who shared that the problems there aren't the results of any infections. One of the doctors from the transplant team took a look at what is going on and stated that it looked like GVHD. Dermatology has been trying to help me out with that, but nothing seems to be solving the issue.
This doctor from the transplant team seems to feel pretty strongly that its time to put me on prednisone. This would be the systemic steroid that would clear up the GVHD symptoms relatively quickly. He explained that my GVHD isn't serious at this point, but that he doesn't like where its heading. I'd be relieved to start the prednisone and to have these symptoms improve. However, the prednisone would decrease the potential graft versus tumor effect, and there is a small fear in the back of my head that it might be best to hold off on it longer. However, I also might be fine and no growth would occur if I started prednisone now. Its impossible to know what will happen with cancer. Right now though the improvement in quality of living would definitely be welcomed.
Tuesday, June 2, 2009
Day +166
I had a clinic visit and a dermatology appointment today at NIH. I met with one of the team's nurse practicioners who I've met several times before but haven't worked too closely with. She took down a pretty complete account of my GVHD symptoms so far. It seems like I'll be in contact with her more as I try to manage my symptoms.
After my initial meeting with her I went to my dermatology appointment. Aside from some itching on my scalp, my skin doesn't really bother me. However, the rash is easy to spot visually, especially on my face. It is still present in all of the original spots, face, neck, shoulders, and chest, but has also spread along my arms, hands, inside of my ankles, and the groin. The dermatologist had pictures taken to document how things are now, and made a slight change to the treatment. I have been taking steroid ointments and creams of varying strengths for different parts of my body. He still wants me to use the strongest steroid for my scalp and most of my body, but switched me to a non-steroid anti-inflammatory for my groin and face. He wanted me to focus a bit more around my eyes, but was worried about having the steroids near them. So I'll continue to apply creams every day, and hopefuly there will be some progress.
After that appointment I went back to the clinic and met with the nurse practicioner and another transplant doctor who I had yet to meet. The reason I have yet to meet with her is that she works with transplants for children. She expressed what other doctors have to me recently, that the condition of my GVHD would probably warrant a systemic steroid if it weren't for the fact that I'm not in complete remission. She stated that there are plenty more options for non-systemic treatment that they could try as well. One idea that stood out is an Ultra Violet treatment for my skin. Apparently sun exposure isn't good for GVHD, but controlled UV light can really help things out. She said that there are some places that even use the UV exposure for the mouth. One of the reasons why I probably haven't heard of this before is that NIH doesn't offer it to patients. However, she said there are several local hospitals that do, including Washington Hospital Center, which is convenient for us. The UV treatment is something that she will discuss with the transplant team.
Since my main complaint right now is swallowing, the nurse practicioner thought that a consult with the GI team might be helpful. She said that GVHD can affect the esophagus by creating webbings from the esophageal tissue. This might be part of the reason why I'm having trouble swallowing, and have some of the discomfort and pain. She wanted them to perform an endoscopy, which would give them an idea if there is any GVHD involvement further down the digestive track. If there were webbing in the esophagus, it would be cleared out when the endoscope moves down the esophagus. That sounds pleasant!
One of the other issues right now is that a culture taken last Thursday shows I have a bacterial infection. I've had some congestion in the throat for about a week, and I don't know how long I've had the infection. I haven't had any fevers, so that was a warning sign that didn't pop up. This infection affects the sinuses and upper respiratory system, so it was explained to me that this might explain some of the problems in my throat. I was prescribed an antibiotic for five days to clear the infection, and that is the only major change in treatment for now. The doctors want to see how I respond on the antibiotics before any other changes are made. So hopefully the GVHD subsides a bit when this infection gets treated.
After my initial meeting with her I went to my dermatology appointment. Aside from some itching on my scalp, my skin doesn't really bother me. However, the rash is easy to spot visually, especially on my face. It is still present in all of the original spots, face, neck, shoulders, and chest, but has also spread along my arms, hands, inside of my ankles, and the groin. The dermatologist had pictures taken to document how things are now, and made a slight change to the treatment. I have been taking steroid ointments and creams of varying strengths for different parts of my body. He still wants me to use the strongest steroid for my scalp and most of my body, but switched me to a non-steroid anti-inflammatory for my groin and face. He wanted me to focus a bit more around my eyes, but was worried about having the steroids near them. So I'll continue to apply creams every day, and hopefuly there will be some progress.
After that appointment I went back to the clinic and met with the nurse practicioner and another transplant doctor who I had yet to meet. The reason I have yet to meet with her is that she works with transplants for children. She expressed what other doctors have to me recently, that the condition of my GVHD would probably warrant a systemic steroid if it weren't for the fact that I'm not in complete remission. She stated that there are plenty more options for non-systemic treatment that they could try as well. One idea that stood out is an Ultra Violet treatment for my skin. Apparently sun exposure isn't good for GVHD, but controlled UV light can really help things out. She said that there are some places that even use the UV exposure for the mouth. One of the reasons why I probably haven't heard of this before is that NIH doesn't offer it to patients. However, she said there are several local hospitals that do, including Washington Hospital Center, which is convenient for us. The UV treatment is something that she will discuss with the transplant team.
Since my main complaint right now is swallowing, the nurse practicioner thought that a consult with the GI team might be helpful. She said that GVHD can affect the esophagus by creating webbings from the esophageal tissue. This might be part of the reason why I'm having trouble swallowing, and have some of the discomfort and pain. She wanted them to perform an endoscopy, which would give them an idea if there is any GVHD involvement further down the digestive track. If there were webbing in the esophagus, it would be cleared out when the endoscope moves down the esophagus. That sounds pleasant!
One of the other issues right now is that a culture taken last Thursday shows I have a bacterial infection. I've had some congestion in the throat for about a week, and I don't know how long I've had the infection. I haven't had any fevers, so that was a warning sign that didn't pop up. This infection affects the sinuses and upper respiratory system, so it was explained to me that this might explain some of the problems in my throat. I was prescribed an antibiotic for five days to clear the infection, and that is the only major change in treatment for now. The doctors want to see how I respond on the antibiotics before any other changes are made. So hopefully the GVHD subsides a bit when this infection gets treated.
Thursday, May 28, 2009
Day +161
I had a two week break from my regular Thursday appointments but I was back at NIH today. I'm not feeling bad, but I wouldn't say I'm doing great the last few days either. The skin GVHD doesn't bother me, and most of my mouth feels better than before. However, I have had a lot of discomfort swallowing, and it definitely makes eating a chore rather than something to be enjoyed. When I weighed in today I had lost five pounds since my weight was last measured three weeks ago. I guess that confirms that the GVHD is affecting how much I eat.
In addition to those two GVHD issues, over the last couple of days I've dealt with some gas, constipation, and other below the belt issues that I'm not certain everybody wants to hear the details about. This might mean a more systemic approach to treating my GVHD is in my future, which of course would reduce the Graft Versus Tumor effect that we want to continue. The doctors still want to treat my GVHD symptoms topically, but I don't know when they would make the decision to change the course of treatment.
So with my swallowing issues I was sent to the Ear, Nose, and Throat specialist. After going over all of my issues again, the doc numbed my nose and throat and stuck the thin camera up my nose and down to look at my throat. She commented that my throat looked better than my mouth and that she didn't see any signs of infection. However, she explained that the mouth and the throat are pretty much the same system, but just at different stages. Since the GVHD in my mouth is so severe. it wouldn't surprise her if it gets worse in my throat. GREAT! So she stated what I've been told before, to keep a very bland diet. Room temperature...nothing acidic, nothing carbonated, nothing spicy. Basically...not much fun for somebody who loves food like I do.
So next week I'll head into NIH on Tuesday to meet with a nurse practicioner who works closely with those who have GVHD. I'll probably work a dermatology appointment that day before coming back to have a dental appointment on Thursday. I got a good break from NIH with the Wisconsin trip, but the GVHD is forcing me to stay close to NIH. Its definitely annoying to continue having medical issues, but GVHD is temporary and also a whole lot better than cancer. I'm not always comfortable but I'm in good spirits.
In addition to those two GVHD issues, over the last couple of days I've dealt with some gas, constipation, and other below the belt issues that I'm not certain everybody wants to hear the details about. This might mean a more systemic approach to treating my GVHD is in my future, which of course would reduce the Graft Versus Tumor effect that we want to continue. The doctors still want to treat my GVHD symptoms topically, but I don't know when they would make the decision to change the course of treatment.
So with my swallowing issues I was sent to the Ear, Nose, and Throat specialist. After going over all of my issues again, the doc numbed my nose and throat and stuck the thin camera up my nose and down to look at my throat. She commented that my throat looked better than my mouth and that she didn't see any signs of infection. However, she explained that the mouth and the throat are pretty much the same system, but just at different stages. Since the GVHD in my mouth is so severe. it wouldn't surprise her if it gets worse in my throat. GREAT! So she stated what I've been told before, to keep a very bland diet. Room temperature...nothing acidic, nothing carbonated, nothing spicy. Basically...not much fun for somebody who loves food like I do.
So next week I'll head into NIH on Tuesday to meet with a nurse practicioner who works closely with those who have GVHD. I'll probably work a dermatology appointment that day before coming back to have a dental appointment on Thursday. I got a good break from NIH with the Wisconsin trip, but the GVHD is forcing me to stay close to NIH. Its definitely annoying to continue having medical issues, but GVHD is temporary and also a whole lot better than cancer. I'm not always comfortable but I'm in good spirits.
Saturday, May 23, 2009
Day +155
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.
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.
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.
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