Today is June 17th, which means I am six months out from the bone marrow transplant. I try to take things one day at a time in life, especially when thinking of the cancer. Therefore I didn't really have many expectations for what it would be like at this point when I was back in the hospital receiving the new cells. However, there were some things that I was hoping for. I haven't gotten the news that I'm free of the cancer yet, which is a bit disappointing, but I haven't received any negative news about the cancer either. I don't think I fully appreciated at the time how long this process would be. I was obviously hoping that I wouldn't have a big problem with GVHD, and I felt I was doing great for a few months. While I missed the acute GVHD right after the transplant, the chronic GVHD has been a recent pain in the butt. I don't know if I had any other goals, but one things I really wanted to do was to get back to work before the end of the school year. Today was the last day of work for the summer, and I thankfully put in about a month of work before the year ended.
So while I didn't quite know what this time would bring me, I have to say that things are pretty positive right now. Bad health is something that I feared before my cancer diagnosis, but I've realized that I can handle the physical problems pretty well. There were some times that I was truly exhausted, sick, or in pain, but these are things that I've been able to handle...especially with Isaiah and Kate helping me along the way. Missing so much work wasn't fun, but the biggest positive taken away from that was a lot of time spent with Isaiah and Kate. Family time, even under less than ideal circumstances, can be as good as it gets.
Moving on from the reminiscing, I celebrated six months with nothing less than a trip to NIH. I saw the dermatologist, who was happy with the progress since the prednisone began. I am also starting a new protocol that will involve some tests to help document what my GHVD symptoms are. For this study they took a couple of skin biopsies today. It was a pretty easy visit overall.
Tommorrow I will head back to NIH for a busy day. I'll meet with the transplant team in the morning for them to check on my progress. They will decide then how I will continue with the prednisone dosing. With the progress I am making they might decide to taper the dosage to every other day. After meeting with them I'll have a dental visit for another study that I'll be starting. This one involves a thalidomide gel to help with ulcers in my mouth. The prednisone has helped my mouth since I started it, but there is still room to improve. This might help out as well, or I could end up on a placebo. Either way it shouldn't hurt.
In the afternoon I will take part in a swallowing test which will give the doctors an idea about how my throat is affecting my ability to swallow. Supposedly this involved some eggs with some traceable isotope in it. Sounds delicious. Following that I'll have to inhale pentamidime, which is the prophylactic for preventing pneumonia. So tommorow will be another busy day, but it feels like business as usual. I'm still a regular around NIH at six months, but that was to be expected. Hopefully it is just the beginning of another successful six months on the long road of life.
Showing posts with label work. Show all posts
Showing posts with label work. Show all posts
Wednesday, June 17, 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.
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 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.
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, December 4, 2008
In Limbo
It has felt like a long week, and it just got a bit longer. Thanksgiving last week was excellent, except for the puking, coughing, and nose blowing that my family and I had to live through. It wasn't just me...but everybody at my parent's house got sick. It was still a good time to be around family, but it could have been a lot better.
Moving on to this week, I finally had my last day at work on Wednesday. With my cold in full effect, I felt drained going to work. However, I was determined to work these last three days. Its not quite sad to be leaving work for an undetermined amount of time, but more frustrating. I won't mind the break from working all day while going through chemotherapy. That was tough. However, not knowing when I'll be back annoys me. I received a lot of love from my coworkers this week, which is always reassuring. I wouldn't mind being a fly on the wall to see the chaos that might go on in my class when I'm not there. Hopefully for everyone involved it will be minimal.
So today was a long day at NIH with a PET scan, several other tests, and my clinic appointment. Usually NIH has been very efficient in terms of appointments, but today we had to wait longer than we would have liked. Some excellent news surely would have cheered my parents, Kate, and I up, but thats not quite what we got. The doctors shared that their was some increased intensity where the lesions in my chest previously were. What this means is that its possible the tumor has changed or is just not responding to chemotherapy like it was before. The cancer may be growing again, which obviously would not be a good thing. If this is the case, I would not be eligible for the bone marrow study right now. However, the doctors will not be sure if the tumor cells are growing until they see the results of a CT scan. I have a CT scan tommorow, and will meet with the transplant doctor to discuss what he sees late in the morning.
So the bone marrow transplant is not officially off, but its in doubt. We should know for sure whether or not it will happen in the near future by tommorow afternoon.
If the transplant is out of the picture for now, one of the doctors did have an idea for an experimental treatment that is taking place outside of NIH. So its good to know that the docs are thinking about other options. My mood right now is frustrated. The most emotionally difficult thing about my cancer experience is that when we have thought everything was figured out, plans seem to often change. So Kate and I aren't feeling down right now. Its obviously tough that things aren't going as we thought they would, but we just have to do whatever is best for my long term health.
I'll probably update the blog tommorow with information about the CT scan. Right now it is just time for more prayers and positive thoughts before the rest of our path is unveiled to us.
Moving on to this week, I finally had my last day at work on Wednesday. With my cold in full effect, I felt drained going to work. However, I was determined to work these last three days. Its not quite sad to be leaving work for an undetermined amount of time, but more frustrating. I won't mind the break from working all day while going through chemotherapy. That was tough. However, not knowing when I'll be back annoys me. I received a lot of love from my coworkers this week, which is always reassuring. I wouldn't mind being a fly on the wall to see the chaos that might go on in my class when I'm not there. Hopefully for everyone involved it will be minimal.
So today was a long day at NIH with a PET scan, several other tests, and my clinic appointment. Usually NIH has been very efficient in terms of appointments, but today we had to wait longer than we would have liked. Some excellent news surely would have cheered my parents, Kate, and I up, but thats not quite what we got. The doctors shared that their was some increased intensity where the lesions in my chest previously were. What this means is that its possible the tumor has changed or is just not responding to chemotherapy like it was before. The cancer may be growing again, which obviously would not be a good thing. If this is the case, I would not be eligible for the bone marrow study right now. However, the doctors will not be sure if the tumor cells are growing until they see the results of a CT scan. I have a CT scan tommorow, and will meet with the transplant doctor to discuss what he sees late in the morning.
So the bone marrow transplant is not officially off, but its in doubt. We should know for sure whether or not it will happen in the near future by tommorow afternoon.
If the transplant is out of the picture for now, one of the doctors did have an idea for an experimental treatment that is taking place outside of NIH. So its good to know that the docs are thinking about other options. My mood right now is frustrated. The most emotionally difficult thing about my cancer experience is that when we have thought everything was figured out, plans seem to often change. So Kate and I aren't feeling down right now. Its obviously tough that things aren't going as we thought they would, but we just have to do whatever is best for my long term health.
I'll probably update the blog tommorow with information about the CT scan. Right now it is just time for more prayers and positive thoughts before the rest of our path is unveiled to us.
Friday, November 21, 2008
Transfusion Tomorrow
This was a quick week at work. It was fast paced and busy, which is always a nice feeling. I've felt like I've had a lot of energy, but I just got a call that my hemoglobin level is 7.9. Usually when my hemoglobin level has been that low I've felt either short of breath or had headaches, so I'm a bit surprised its that low. So it looks like I'll head into NIH tommorow for another transfusion. This is the third straight cycle of EPOCH-CR that I'll get a blood transfusion because of my red blood counts, so it is expected and pretty routine.
It might seem like a drain to spend a Saturday afternoon in the hospital, but its definitely best for me. I've been debating what I should do tommorow, and the options probably wouldn't have been the safest for a neutropenic chemo patient. Tommorow is Catholic's last football game of the year, and I would love to be out there watching them. Unfortunately with highs not expected to get out of the 30's, this would have been a poor choice. This weekend is also the beginning of Thanksgiving week which means Mary, Mya, and Reed will be coming up from Florida. Since Mary and Kate are planning on having a fun day on their own tommorow, I could spend a lot of time with my lil relatives. Unfortunately Isaiah visited the doctor today and was put on antibiotics. So while playing with the lil ones sounds like a fun time, being around my sick kid and a couple of more toddlers probably wouldn't be great either. So I guess I'll just suck it up tomorrow, grab a book, and stay out of harm's way.
It might seem like a drain to spend a Saturday afternoon in the hospital, but its definitely best for me. I've been debating what I should do tommorow, and the options probably wouldn't have been the safest for a neutropenic chemo patient. Tommorow is Catholic's last football game of the year, and I would love to be out there watching them. Unfortunately with highs not expected to get out of the 30's, this would have been a poor choice. This weekend is also the beginning of Thanksgiving week which means Mary, Mya, and Reed will be coming up from Florida. Since Mary and Kate are planning on having a fun day on their own tommorow, I could spend a lot of time with my lil relatives. Unfortunately Isaiah visited the doctor today and was put on antibiotics. So while playing with the lil ones sounds like a fun time, being around my sick kid and a couple of more toddlers probably wouldn't be great either. So I guess I'll just suck it up tomorrow, grab a book, and stay out of harm's way.
Friday, September 26, 2008
Low Blood Counts Coming Up
I've felt the urge to update the blog several times this week, and even started typing at one point only to stop. Having the concentration and energy to sit down, gather my thoughts, and type for a few minutes can be hard at times. Its was probably harder the past few days than most since my blood counts were at their lowest during this time.
On Monday my white blood cell count was 400 with a neutrophil count of 310. Thats extremely low and offered me about as little help fighting infections as a person can get without a completely ineffective immune system. My temperature is usually between 97 and 98 degrees, and it went up to 99.5 at one point on Tuesday. So I had a borderline fever. However, my temperature came down quickly and I didn't have to consider calling NIH and heading to the hospital. Since then it has remained normal.
Yesterday was day 14 of my cycle and the day that I am usually told I can stop taking the neupogen shots. However, my neutrophil count was 4400, which is below the 5000 number necessary to stop the injections. I was somewhat expecting this since my counts were so low on Monday. So I'll make an extra stop to NIH tommorow to have my blood checked and ensure that my counts have risen to a safer level.
I worked all week and was pretty tired most days after getting home. Today I have a lot more energy in the afternoon and I feel like I've turned the corner in terms of energy this cycle. The next 5 days I should feel pretty normal and enjoy things before the next round of EPOCH-C begins.
On Monday my white blood cell count was 400 with a neutrophil count of 310. Thats extremely low and offered me about as little help fighting infections as a person can get without a completely ineffective immune system. My temperature is usually between 97 and 98 degrees, and it went up to 99.5 at one point on Tuesday. So I had a borderline fever. However, my temperature came down quickly and I didn't have to consider calling NIH and heading to the hospital. Since then it has remained normal.
Yesterday was day 14 of my cycle and the day that I am usually told I can stop taking the neupogen shots. However, my neutrophil count was 4400, which is below the 5000 number necessary to stop the injections. I was somewhat expecting this since my counts were so low on Monday. So I'll make an extra stop to NIH tommorow to have my blood checked and ensure that my counts have risen to a safer level.
I worked all week and was pretty tired most days after getting home. Today I have a lot more energy in the afternoon and I feel like I've turned the corner in terms of energy this cycle. The next 5 days I should feel pretty normal and enjoy things before the next round of EPOCH-C begins.
Saturday, September 20, 2008
Standard Update
My 2nd round of EPOCH-C was possibly the easiest cycle of chemotherapy I've had so far, but this most recent one has not been as nice. Things are still going well, although the chemo has been affecting me a bit more. I was able to work the entire week, and felt pretty good while doing so. On Thursday I came home to see my mom had stopped by for a surprise visit. A back to school night was scheduled at work, but I decided to lay down for a minute to rest before heading back to work. I immediately fell asleep, and became completely disoriented. Isaiah brushed by my leg at one point, and I woke up startled and thinking it was the next day, although I probably had only had my eyes closed a few minutes. So I ditched the idea of returning to work and took a nap while Kate, Isaiah, and my mom went to the local farmer's market.
One of the cumulative side effects of the chemotherapy is gum loss. The mouth is full of rapidly producing cells, and the chemotherapy is starting to take a toll on them. I've started to notice a little less taste this past week from my taste buds. My gums are bleeding very easily when I brush, I'm getting some small sores on my tongue and, the receeding gums means I get way too much food stuck in between my teeth. This hasn't become a big problem, but it can certainly be uncomfortable. A clean, healthy mouth is definitely one of the small things in life that is taken for granted until it becomes a problem.
One of the cumulative side effects of the chemotherapy is gum loss. The mouth is full of rapidly producing cells, and the chemotherapy is starting to take a toll on them. I've started to notice a little less taste this past week from my taste buds. My gums are bleeding very easily when I brush, I'm getting some small sores on my tongue and, the receeding gums means I get way too much food stuck in between my teeth. This hasn't become a big problem, but it can certainly be uncomfortable. A clean, healthy mouth is definitely one of the small things in life that is taken for granted until it becomes a problem.
Thursday, September 11, 2008
Round 3 of EPOCH-C Begins
Today marks the last day of my 2nd cycle of EPOCH-C, and the beginning of the 3rd cycle. Things started off well. I dropped Isaiah off at pre-school and for the second day in a row he clung to me and screamed as I tried to leave. The good news is that he is doing great at school, although its hard to walk out of a room with your child screaming for your attention. After that I was able to put in a half day of work before heading off with Kate to my clinic appointment.
The appointment today was mostly uneventful. There weren't any new tests run to check on the status of the cancer in my body. I reported back that things went well and they decided to proceed with business as usual. Next time I'm in for my clinic appointment after this third cycle, they will put me through the PET Scan again. At that point I'm praying and expecting a clean PET that will tell me I am in remission. That would set me up perfectly for the transplant that is coming up.
Now it wasn't planned, but Kate, my parents, and I were able to talk with the transplant doctor today for a few minutes. He answered a few questions, and stated that he would state on the disability forms I need filled out that I would probably be out of work until January 2010. OUCHHHH. That hurts. Its a long time to consider not having anything to do but this medical business. He did say its possible that I could go back sooner, and I have every intention of doing so. Hopefully the recovery from the transplant will be smooth enough to allow me to do so.
Following the appointment Kate and my mom went home to pick Isaiah up from school while my dad stayed with me while I got admitted. After I was all checked in my dad and I went out to get a steak and a beer before starting my infusions. It was a good experience, because while I see my father often, it is infrequent that we get to enjoy a full meal one on one. That was a good time to have.
Now that I am in the hospital, I got a chance to speak with my roommate and his wife. He is a guy in his 60s who has T-cell lymphoma. Before receiving EPOCH-C, I was told by my doctors that I was only the 7th person with Lymphoma to receive this treatment. Pretty rare company. Turns out my roommate tonight is one of the other six. He is a good guy who is in here now because of an infection. He has already finished up his treatment and is thankfully in remission. He is full of praise for Campath and the doctors at NIH, which is great to hear from somebody with a similar treatment. So hopefully both of us continue to do well coming out of this treatment, and Campath can hopefully become a bonified option for Lymphoma patients.
Saturday, September 6, 2008
Rain Rain Go Away
Well right now the rain is pouring down as Tropical Storm Hanna comes through. The news says about an inch and a half has fallen near here today after about a half inch last night. So there are some nice puddles in the yard, and a little bit of an overflowing gutter. Isaiah's sandbox has some sand stolen from it in order to keep water away from our front door. Lots of rain, but its kind of fun. Isaiah and I took some time to play in the rain this morning, and we have some evidence to prove it.
Since I am crazy enough to play around in the rain, you can probably assume that I am feeling well. My blood test from Thursday was above the point of being neutropenic, so I was able to stop taking my neupogen injection. I never had my blood tested below the neutropenic point during this cycle, but I was just barely above being neutropenic with this last test. So it is likely that I reached that point on Tuesday or Wednesday. However, I was able to work all week, and felt like I had a ton of energy. Last night I fell asleep around Isaiah's bed time, and didn't get up for about 12 hours. So I think my body shut down a bit after a busy week, but I am well rested and have a ton of energy again today. So right now I am looking forward to a few more days of feeling great before I head back toNIH on Thursday for the next round of chemotherapy.
Since I am crazy enough to play around in the rain, you can probably assume that I am feeling well. My blood test from Thursday was above the point of being neutropenic, so I was able to stop taking my neupogen injection. I never had my blood tested below the neutropenic point during this cycle, but I was just barely above being neutropenic with this last test. So it is likely that I reached that point on Tuesday or Wednesday. However, I was able to work all week, and felt like I had a ton of energy. Last night I fell asleep around Isaiah's bed time, and didn't get up for about 12 hours. So I think my body shut down a bit after a busy week, but I am well rested and have a ton of energy again today. So right now I am looking forward to a few more days of feeling great before I head back toNIH on Thursday for the next round of chemotherapy.
Wednesday, September 3, 2008
No News is Good News and an off topic note on Isaiah
Well there is nothing for me to update medically today, which is good news. I've been at work the last two days and have had great energy and no problems associated with the chemotherapy. Tommorow I will have my blood drawn again, and should here back in the evening or Friday morning about where my blood counts stand. At this point during the last cycle my counts had rebounded greatly, so I'm expecting more of the same from this report.
Since many people reading this know or have met Isaiah, I thought I'd share some of his good news. Today was his first day of pre-school, which led to a lot of excitement for him and some nervousness from his mother. Kate and I dropped him off together this morning before I headed off to work. He jumped right in to the toys and seemed to be happy to be at school. He didn't panic as we walked out the door.
The school is located conveniently for me on my new route home from work, so I picked him up about four o'clock. I met his teacher, who was not there yet when we dropped him off in the morning. She reported that Isaiah had a great day, although when she first arrived he was screaming. I guess he wasn't quite prepared for school without mommy and daddy. However, she said he calmed himself in 5 minutes and didn't have any troubles the rest of the day.
She was impressed with how Isaiah behaved and communicated, and said she was surprised this was his first day considering how he did. Part of the day is nap time, which is interesting since Isaiah has given up on day time naps over the summer. When the children were asked to lay down, Isaiah stated, "I am going to sit."
The teacher told Isaiah, "You can lay down on the cot."
To which Isaiah replied, "I'd rather not."
She seemed impressed and entertained by his communication style. So Isaiah seems to have found a new friend in his teacher. Isaiah was excited to share about his day over the phone with his family, although that basically involved him repeatedly exclaiming, "I went to school today." He is excited to head back tommorow, and so am I after finding out he had such a wonderful time.
Since many people reading this know or have met Isaiah, I thought I'd share some of his good news. Today was his first day of pre-school, which led to a lot of excitement for him and some nervousness from his mother. Kate and I dropped him off together this morning before I headed off to work. He jumped right in to the toys and seemed to be happy to be at school. He didn't panic as we walked out the door.
The school is located conveniently for me on my new route home from work, so I picked him up about four o'clock. I met his teacher, who was not there yet when we dropped him off in the morning. She reported that Isaiah had a great day, although when she first arrived he was screaming. I guess he wasn't quite prepared for school without mommy and daddy. However, she said he calmed himself in 5 minutes and didn't have any troubles the rest of the day.
She was impressed with how Isaiah behaved and communicated, and said she was surprised this was his first day considering how he did. Part of the day is nap time, which is interesting since Isaiah has given up on day time naps over the summer. When the children were asked to lay down, Isaiah stated, "I am going to sit."
The teacher told Isaiah, "You can lay down on the cot."
To which Isaiah replied, "I'd rather not."
She seemed impressed and entertained by his communication style. So Isaiah seems to have found a new friend in his teacher. Isaiah was excited to share about his day over the phone with his family, although that basically involved him repeatedly exclaiming, "I went to school today." He is excited to head back tommorow, and so am I after finding out he had such a wonderful time.
Monday, September 1, 2008
Feeling Great at Day 11
Well today is day 11 of my 2nd round of chemotherapy and I'm happy to report I'm feeling great. Since I stopped receiving my infusions, I am supposed to monitor my temperature closely to make sure I don't develop a fever. I haven't risen above 98.7, so thats been good. I don't remember well, but Kate reminded me that it was day 12 during the last cycle that I felt the worst. Hopefully my positive feeling won't end in the next day or so.
Today I went in to NIH to get my blood drawn. I got a phone call back from the nurse there that I am not neutropenic. That isn't surprising considering how I'm feeling, but it is considering I was neutropenic at this point in the 1st cycle. The dosage increased with the EPOCH, so I believe the doctors thought I would be very low on my blood counts. While all of my counts are fine right now, it is still possible that they are still decreasing. So there is a chance I could still get sick in the next few days. By Thursday I should know if my counts are rebounding, and I expect that to be the situation.
While at NIH I took the opportunity to weigh myself, and I was down to 246. So while it was shocking to gain 10 pounds in 5 days last week, it is good to know that not all of that weight was permanent. I still have a good appetite, so its not like I'm starving myself. I probably had a lot of extra water weight at that time.
Well I am feeling great right now, and enjoying the paid day off for Labor Day. If I feel as well as I do now tommorow I will be finishing up another day of work in 24 hours. Out of all 8 cycles of chemotherapy that I've had, I think I might be feeling as good during this round as I have during any. My energy is high, and I'm not feeling a lot of side effects. I hope everybody else is feeling great and enjoying the holiday as much as I am!
Today I went in to NIH to get my blood drawn. I got a phone call back from the nurse there that I am not neutropenic. That isn't surprising considering how I'm feeling, but it is considering I was neutropenic at this point in the 1st cycle. The dosage increased with the EPOCH, so I believe the doctors thought I would be very low on my blood counts. While all of my counts are fine right now, it is still possible that they are still decreasing. So there is a chance I could still get sick in the next few days. By Thursday I should know if my counts are rebounding, and I expect that to be the situation.
While at NIH I took the opportunity to weigh myself, and I was down to 246. So while it was shocking to gain 10 pounds in 5 days last week, it is good to know that not all of that weight was permanent. I still have a good appetite, so its not like I'm starving myself. I probably had a lot of extra water weight at that time.
Well I am feeling great right now, and enjoying the paid day off for Labor Day. If I feel as well as I do now tommorow I will be finishing up another day of work in 24 hours. Out of all 8 cycles of chemotherapy that I've had, I think I might be feeling as good during this round as I have during any. My energy is high, and I'm not feeling a lot of side effects. I hope everybody else is feeling great and enjoying the holiday as much as I am!
Tuesday, August 26, 2008
Ten Pounds
Today was day five of my second cycle of chemotherapy, which means I received my cytoxin infusion and had my PICC line pulled out. So I am no longer connected to a backpack full of medicine!!!
I had a different nurse the last two days, and she decided to weigh me before my infusion. I usually don't get weighed at this time, but I did so today. On Thursday, just 5 days ago, I weighed in at 239 pounds. That was only 3 pounds more than I had weighed before my first round of EPOCH-C. So I was proud of myself for not gaining a lot of weight despite all of the hunger I experience with the prednisone.
So just 5 prednisone fueled days after the last weigh in, I jumped on the scales at 249! 10 pounds in less than 5 days is impressive. Thats some good eating! Now...I did leave my shoes on, have a bit of crap in my pocket, and was wearing long pants instead of shorts, so it might have been just 9 pounds. However, that is still a lot to put on in such a short amount of time. It will be interesting to see how my weight does over the next 16 days when I am off of the steroids.
Besides the full belly I am doing well though. I was able to work this morning and Monday, which was nice to do since Monday was the first day of school for students. Seeing the students who I've worked with before and meeting new students reminded me so much why I love my job. It felt great to be back in that environment, but disappointing at the same time since I don't know how much I will be able to work this year while dealing with this illness. Its discouraging to know that I won't be there everyday, but this is just one of those situations where I have to take things from day to day. For the rest of the week I plan on working, but I know next week my blood counts will be so low that I might not have the energy to make it through a day of work. My lead research doctor let me know to be prepared to enter the hospital next week, but I'm hoping that won't need to happen.
I had a different nurse the last two days, and she decided to weigh me before my infusion. I usually don't get weighed at this time, but I did so today. On Thursday, just 5 days ago, I weighed in at 239 pounds. That was only 3 pounds more than I had weighed before my first round of EPOCH-C. So I was proud of myself for not gaining a lot of weight despite all of the hunger I experience with the prednisone.
So just 5 prednisone fueled days after the last weigh in, I jumped on the scales at 249! 10 pounds in less than 5 days is impressive. Thats some good eating! Now...I did leave my shoes on, have a bit of crap in my pocket, and was wearing long pants instead of shorts, so it might have been just 9 pounds. However, that is still a lot to put on in such a short amount of time. It will be interesting to see how my weight does over the next 16 days when I am off of the steroids.
Besides the full belly I am doing well though. I was able to work this morning and Monday, which was nice to do since Monday was the first day of school for students. Seeing the students who I've worked with before and meeting new students reminded me so much why I love my job. It felt great to be back in that environment, but disappointing at the same time since I don't know how much I will be able to work this year while dealing with this illness. Its discouraging to know that I won't be there everyday, but this is just one of those situations where I have to take things from day to day. For the rest of the week I plan on working, but I know next week my blood counts will be so low that I might not have the energy to make it through a day of work. My lead research doctor let me know to be prepared to enter the hospital next week, but I'm hoping that won't need to happen.
Saturday, August 23, 2008
Good News after First Cycle of Chemotherapy
THURSDAY, AUGUST 21, 2008 08:38 PM, CDT
So this is nice. I'm sitting in my hospital room for the night waiting to start treatment and I've got an internet hookup. I've known there was a possibility to access the internet in the rooms at NIH, but this is the first time one of my beds was equipped with the keyboard and mouse. The space bar on this keyboard is extremely sticky, which is an annoyance. If you read any compound words that shouldn't be, you will know why.
As far as all day hospital visits go, today wasn't bad. I had a Pet Scan to start the day, and it was a lot more comfortable than the one I had a month ago. My plan to stay up half the night last night paid off this morning. I slept very easily during the scan. Even better news than my comfort during the scan was its result. I was informed by my lead doctor while I waited for my appointment that the Pet Scan had very positive results. Later during the consultation he stated the Pet showed an 80 to 90% improvement. That was great news. Since the treatment has gone so well after this first treatment, I will continue to receive the EPOCH and Campath.
Following my appointment I went to get my PICC line placed. That was uncomfortable as usual, but its over with now. While I was getting that procedure, my parents talked with the doctor from the transplant team. He gave them some good information about what the process will be like. We discussed things over dinner, and my parents said the doctor will see me tommorow and give me further information. My father the doctor was impressed with the transplant doctor, and I feel like I will be comfortable getting the transplant here at NIH. It will be great to get that treatment here in Maryland, because I will be close to family and friends. The free services at NIH(THANKYOU FELLOW TAX PAYERS) will also be a great benefit in addition to the high level of medical care I will get here. Unfortunately it looks like I will be spending up to a year out of work following the transplant, so there will be a lot of issues to deal with financially. Luckily for Kate, Isaiah, and I we have a family full of people that are completely supportive. I imagine how hard it is to live through this process for those without the financial and spiritual resources our family and friends have, and I know that we are blessed.
So the vibe tonight is of happiness. The treatment is working so far, but there is still a long way to go before permanent good health is achieved. I should start this second round of chemotherapy around 11 tonight, and hopefully all will go well.
So this is nice. I'm sitting in my hospital room for the night waiting to start treatment and I've got an internet hookup. I've known there was a possibility to access the internet in the rooms at NIH, but this is the first time one of my beds was equipped with the keyboard and mouse. The space bar on this keyboard is extremely sticky, which is an annoyance. If you read any compound words that shouldn't be, you will know why.
As far as all day hospital visits go, today wasn't bad. I had a Pet Scan to start the day, and it was a lot more comfortable than the one I had a month ago. My plan to stay up half the night last night paid off this morning. I slept very easily during the scan. Even better news than my comfort during the scan was its result. I was informed by my lead doctor while I waited for my appointment that the Pet Scan had very positive results. Later during the consultation he stated the Pet showed an 80 to 90% improvement. That was great news. Since the treatment has gone so well after this first treatment, I will continue to receive the EPOCH and Campath.
Following my appointment I went to get my PICC line placed. That was uncomfortable as usual, but its over with now. While I was getting that procedure, my parents talked with the doctor from the transplant team. He gave them some good information about what the process will be like. We discussed things over dinner, and my parents said the doctor will see me tommorow and give me further information. My father the doctor was impressed with the transplant doctor, and I feel like I will be comfortable getting the transplant here at NIH. It will be great to get that treatment here in Maryland, because I will be close to family and friends. The free services at NIH(THANKYOU FELLOW TAX PAYERS) will also be a great benefit in addition to the high level of medical care I will get here. Unfortunately it looks like I will be spending up to a year out of work following the transplant, so there will be a lot of issues to deal with financially. Luckily for Kate, Isaiah, and I we have a family full of people that are completely supportive. I imagine how hard it is to live through this process for those without the financial and spiritual resources our family and friends have, and I know that we are blessed.
So the vibe tonight is of happiness. The treatment is working so far, but there is still a long way to go before permanent good health is achieved. I should start this second round of chemotherapy around 11 tonight, and hopefully all will go well.
First Round of Chemotherapy Done
THURSDAY, AUGUST 21, 2008 12:13 AM, CDT
Well today is day 21 of this most recent round of chemo. School for DC starts next week, and Tuesday was the first day of work for teachers in DC. I was able to work the last two days because I have been feeling very good since Thursday. I haven't needed naps to get through the day, and I've truly felt as good as ever. Work the past two days involved all day professional development, which isn't a bad thing. I was happy to see some of my colleagues and get back into the mindset of work, although it is frustrating to know that I'll likely be missing so much time in the next few months.
Tommorow will probably start day 1 of round 2 assuming things have gone well. I'll start tommorow off with a Pet Scan in the late morning. I had a Pet Scan less than a month ago, and its rare for Pet Scans to be used so close together. Hopefully it will give results that show the tumor is shrinking. This is what I expect, but we've been disappointed by expectations in terms of my health in the last month.
In addition to meeting with my research team tommorow, I'm hoping to meet with the transplant team in order to start hearing a bit more about what the transplant process will be like. This is the part of my treatment that is most likely to cause me anxiety, so I'm eager to start finding out more about it.
Following the meetings with the doctors I'll likely get the PICC line placed in my arm before getting admitted for the overnight Campath infusion. Hopefully they will be able to get started earlier than 1 AM this round, so I can get out of the hospital quickly Friday morning.
Well...off to kill some more cancer tommorow. As always...the prayers and thoughts from everybody is appreciated.
Well today is day 21 of this most recent round of chemo. School for DC starts next week, and Tuesday was the first day of work for teachers in DC. I was able to work the last two days because I have been feeling very good since Thursday. I haven't needed naps to get through the day, and I've truly felt as good as ever. Work the past two days involved all day professional development, which isn't a bad thing. I was happy to see some of my colleagues and get back into the mindset of work, although it is frustrating to know that I'll likely be missing so much time in the next few months.
Tommorow will probably start day 1 of round 2 assuming things have gone well. I'll start tommorow off with a Pet Scan in the late morning. I had a Pet Scan less than a month ago, and its rare for Pet Scans to be used so close together. Hopefully it will give results that show the tumor is shrinking. This is what I expect, but we've been disappointed by expectations in terms of my health in the last month.
In addition to meeting with my research team tommorow, I'm hoping to meet with the transplant team in order to start hearing a bit more about what the transplant process will be like. This is the part of my treatment that is most likely to cause me anxiety, so I'm eager to start finding out more about it.
Following the meetings with the doctors I'll likely get the PICC line placed in my arm before getting admitted for the overnight Campath infusion. Hopefully they will be able to get started earlier than 1 AM this round, so I can get out of the hospital quickly Friday morning.
Well...off to kill some more cancer tommorow. As always...the prayers and thoughts from everybody is appreciated.
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