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.
Tuesday, August 26, 2008
Saturday, August 23, 2008
Bone Marrow Transplant Details
SATURDAY, AUGUST 23, 2008 02:26 PM, CDT
After the good news on Thursday things continued to go well for me. I was told that the first infusion of Campath is the one with the worst side effects. After a night without fevers, chills, or any pain, I would have to agree. The only problem staying overnight at the hospital was being woken every hour when the nurses took vital signs.
Friday was another long day at the hospital. In addition to finishing up the Campath and getting hooked up to my EPOCH bag, I had two other tests. I had a Pulmonary Functioning Test and an Echocardiogram. The techs told me after each test that my lung and my heart were looking good. Thats great news looking forward to the Bone Marrow Transplant.
After those two tests I met up with Kate at the hospital. She and I got an opportunity to speak with the transplant doctor for about a half hour. He let us know that there were 600 potential donors from the search, and that it gave us an 80 percent chance of finding a match. That was pretty good to hear. He also went into detail about the three different types of transplants that are done for lymphoma patients.
The lead research doctor told us 3 weeks ago that an autologus transplant, which uses a patients own stem cells to replace the decimated bone marrow, would be unlikely to provide a long term cure. The transplant doctor said that he thinks all 3 transplant options would be good for me, but was less enthusiastic about this option because of how quickly I relapsed after going into complete remission.
The other two transplant options are called allogeneic transplants. They require taking bone marrow from a donor. The traditional way of doing this is called a myelooblative transplant. Myelooblative, also called a high intensity transplant, requires radiation and high dose chemotherapy to virtually remove all of the bone marrow in my body before the transplant. The good news about this transplant is that it has the best results in terms of complete remission. However, it also has the highest mortality rates...about 20-30%. The transplant doctor said if I were a 15-17 year old, that he would definitely reccomend this option. His thinking is that younger patients are just able to handle the high dosage of chemotherapy without complications. He stated that at my age I am in the middle ground but leaning towards the younger side. So this wouldn't be a bad option in his opinion.
The more recent development in stem cell transplants is the non-myelooblative transplant, also known as low intensity. The thought behind this procedure is that a complete elimination of the recipient's bone marrow isn't necessary, and that an allogeneic transplant could be done with smaller doses of chemotherapy. The difference between the myelooblative and non-myeloblative transplants is a reduction in half in both mortality rates and successful remission. The mortality rate for his treatment is 10%, however the percent of those achieving complete remission is between 25-75%. Thats a pretty big range in my opinion. However, the 1 in 10 chance of mortality sounds a lot better than 20-30% to me.
The doctor shared that to be eligible for a low intensity transplant, that a person's tumor has to be viewed as chemo sensitive. The number needed to be chemo sensitive is 50% improvement. Since I received an 80-90% improvement on just 1 cycle of EPOCH-C, I am already seen as a good match for this treatment. The doctor stated that the best predictor of success in these transplants is cancer sensitivity. Because of my positive results so far, he feels that I would be a great candidate for a non-myelooblative transplant.
OK...so thats a lot of information and I imagine it could be quite complicated for people. At this point I feel like going forward with the non-myelooblative transplant. I feel like the chemo works well on my cancer, and that I will likely be in remission again like I was back in January. That would give me a great chance of long term remission with this treatment, and I could avoid the higher potential mortality rates that the full intensity treatment has. NIH also offers the low intensity transplant, which would allow us to stay local with my treatment. Having to go to another city to have the transplant would be worthwhile if there was a better option. However, I feel comfortable with the program at NIH, and I trust that my doctor's are learning how to treat my cancer. As the transplant doctor said, "Its not like you have even 100 patients with your type of disease to give us an idea of what should be done." Other hospitals just might not have a good idea of what to do with my diagnosis.
Staying at NIH will also allow my family to visit easily without the stresses of travel. Kate will have a lot on her hands with a sick husband at the hospital and a 2 year old to watch at home. So the family support will be very important during this ordeal. So things are looking good for my continued treatment at NIH. The doctor just reccomended that I continue to eat healthy, exercise, and stay in as best shape as possible. Assuming the chemotherapy continues to go well, things are looking up. Unfortunately it will be a long process. The doctor stated that it takes about a year's committment after this procedure. However, he said that once I leave the hospital I should be able to endure most activities that I normally do. The one thing he did state was that yard work would not be reccomended. Oh well...there goes one of the things I like to do, but it could be worse!
After the good news on Thursday things continued to go well for me. I was told that the first infusion of Campath is the one with the worst side effects. After a night without fevers, chills, or any pain, I would have to agree. The only problem staying overnight at the hospital was being woken every hour when the nurses took vital signs.
Friday was another long day at the hospital. In addition to finishing up the Campath and getting hooked up to my EPOCH bag, I had two other tests. I had a Pulmonary Functioning Test and an Echocardiogram. The techs told me after each test that my lung and my heart were looking good. Thats great news looking forward to the Bone Marrow Transplant.
After those two tests I met up with Kate at the hospital. She and I got an opportunity to speak with the transplant doctor for about a half hour. He let us know that there were 600 potential donors from the search, and that it gave us an 80 percent chance of finding a match. That was pretty good to hear. He also went into detail about the three different types of transplants that are done for lymphoma patients.
The lead research doctor told us 3 weeks ago that an autologus transplant, which uses a patients own stem cells to replace the decimated bone marrow, would be unlikely to provide a long term cure. The transplant doctor said that he thinks all 3 transplant options would be good for me, but was less enthusiastic about this option because of how quickly I relapsed after going into complete remission.
The other two transplant options are called allogeneic transplants. They require taking bone marrow from a donor. The traditional way of doing this is called a myelooblative transplant. Myelooblative, also called a high intensity transplant, requires radiation and high dose chemotherapy to virtually remove all of the bone marrow in my body before the transplant. The good news about this transplant is that it has the best results in terms of complete remission. However, it also has the highest mortality rates...about 20-30%. The transplant doctor said if I were a 15-17 year old, that he would definitely reccomend this option. His thinking is that younger patients are just able to handle the high dosage of chemotherapy without complications. He stated that at my age I am in the middle ground but leaning towards the younger side. So this wouldn't be a bad option in his opinion.
The more recent development in stem cell transplants is the non-myelooblative transplant, also known as low intensity. The thought behind this procedure is that a complete elimination of the recipient's bone marrow isn't necessary, and that an allogeneic transplant could be done with smaller doses of chemotherapy. The difference between the myelooblative and non-myeloblative transplants is a reduction in half in both mortality rates and successful remission. The mortality rate for his treatment is 10%, however the percent of those achieving complete remission is between 25-75%. Thats a pretty big range in my opinion. However, the 1 in 10 chance of mortality sounds a lot better than 20-30% to me.
The doctor shared that to be eligible for a low intensity transplant, that a person's tumor has to be viewed as chemo sensitive. The number needed to be chemo sensitive is 50% improvement. Since I received an 80-90% improvement on just 1 cycle of EPOCH-C, I am already seen as a good match for this treatment. The doctor stated that the best predictor of success in these transplants is cancer sensitivity. Because of my positive results so far, he feels that I would be a great candidate for a non-myelooblative transplant.
OK...so thats a lot of information and I imagine it could be quite complicated for people. At this point I feel like going forward with the non-myelooblative transplant. I feel like the chemo works well on my cancer, and that I will likely be in remission again like I was back in January. That would give me a great chance of long term remission with this treatment, and I could avoid the higher potential mortality rates that the full intensity treatment has. NIH also offers the low intensity transplant, which would allow us to stay local with my treatment. Having to go to another city to have the transplant would be worthwhile if there was a better option. However, I feel comfortable with the program at NIH, and I trust that my doctor's are learning how to treat my cancer. As the transplant doctor said, "Its not like you have even 100 patients with your type of disease to give us an idea of what should be done." Other hospitals just might not have a good idea of what to do with my diagnosis.
Staying at NIH will also allow my family to visit easily without the stresses of travel. Kate will have a lot on her hands with a sick husband at the hospital and a 2 year old to watch at home. So the family support will be very important during this ordeal. So things are looking good for my continued treatment at NIH. The doctor just reccomended that I continue to eat healthy, exercise, and stay in as best shape as possible. Assuming the chemotherapy continues to go well, things are looking up. Unfortunately it will be a long process. The doctor stated that it takes about a year's committment after this procedure. However, he said that once I leave the hospital I should be able to endure most activities that I normally do. The one thing he did state was that yard work would not be reccomended. Oh well...there goes one of the things I like to do, but it could be worse!
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.
Feeling Better
FRIDAY, AUGUST 15, 2008 11:02 PM, CDT
Today was a very good day. Unfortunately Isaiah woke up at 7 and instead of playing quietly in his room, he decided to make a lot of noise and force me up. So I was up much earlier than I have been used to lately. However, I felt great all day and didn't need a nap to get through it. Thats the first time in weeks I've been able to go through a day without passing out once or twice. So I had a great day spending time with Isaiah and Kate.
After my blood tests from Monday revealed my white blood cell count was down to 800, I received a call that my blood count yesterday was at 7800. I needed a blood count of over 5000 in order to stop my neupogen shots, so it is great that I rebounded that much. I think my renewed energy is a sign of that.
I also got a call from the doctor who leads my research team. It was interesting that I talked to him, because its usually a nurse who makes calls. He passed on that the search for bone marrow donors was complete. His words were that there were a lot of potential donors, and it was highly likely that they would find a match. So thats great news. It was expected, but it was great to hear nevertheless.
There have been a lot of people, whether through my wife, my parents, or I, who have expressed an interest in becoming a bone marrow donor. I would hope that anybody who had that urge would follow through with that. It appears that I will be blessed enough to have a donor match, but it would be amazing if more people could make themselves eligible as donors so that other people who find themselves in a similar situation as mine will have better opportunities.
Today was a very good day. Unfortunately Isaiah woke up at 7 and instead of playing quietly in his room, he decided to make a lot of noise and force me up. So I was up much earlier than I have been used to lately. However, I felt great all day and didn't need a nap to get through it. Thats the first time in weeks I've been able to go through a day without passing out once or twice. So I had a great day spending time with Isaiah and Kate.
After my blood tests from Monday revealed my white blood cell count was down to 800, I received a call that my blood count yesterday was at 7800. I needed a blood count of over 5000 in order to stop my neupogen shots, so it is great that I rebounded that much. I think my renewed energy is a sign of that.
I also got a call from the doctor who leads my research team. It was interesting that I talked to him, because its usually a nurse who makes calls. He passed on that the search for bone marrow donors was complete. His words were that there were a lot of potential donors, and it was highly likely that they would find a match. So thats great news. It was expected, but it was great to hear nevertheless.
There have been a lot of people, whether through my wife, my parents, or I, who have expressed an interest in becoming a bone marrow donor. I would hope that anybody who had that urge would follow through with that. It appears that I will be blessed enough to have a donor match, but it would be amazing if more people could make themselves eligible as donors so that other people who find themselves in a similar situation as mine will have better opportunities.
Neutropenia
WEDNESDAY, AUGUST 13, 2008 12:26 AM, CDT
I woke up this morning and didn't feel any pain at all in my back. I got through the whole day and didn't have any problems with bone pain, so that was great.
I got a call from one of the nurses at NIH with the results of my blood test from yesterday. I get my blood drawn twice a week to check the white cell counts. Last Friday I had normal a normal WBC count of 1600. From Monday's test I had gone down to 800, which made me neutropenic. That basically means I have less cells fighting infections in my blood, so I am susceptible to infections.
I definitely felt the effects of this condition on my body, because I slept most of the day. I had very little energy and couldn't stay awake after having breakfast. I managed to get out of the house a little bit in the late afternoon, but I quickly started feeling worn out after that. So it looks like I'll be taking it easy for the next couple of days until I get the results of my next blood test Thursday or Friday.
I woke up this morning and didn't feel any pain at all in my back. I got through the whole day and didn't have any problems with bone pain, so that was great.
I got a call from one of the nurses at NIH with the results of my blood test from yesterday. I get my blood drawn twice a week to check the white cell counts. Last Friday I had normal a normal WBC count of 1600. From Monday's test I had gone down to 800, which made me neutropenic. That basically means I have less cells fighting infections in my blood, so I am susceptible to infections.
I definitely felt the effects of this condition on my body, because I slept most of the day. I had very little energy and couldn't stay awake after having breakfast. I managed to get out of the house a little bit in the late afternoon, but I quickly started feeling worn out after that. So it looks like I'll be taking it easy for the next couple of days until I get the results of my next blood test Thursday or Friday.
Bone Pain and Oxycodone
MONDAY, AUGUST 11, 2008 08:38 PM, CDT
I just spent a lot of time writing out a journal update to only have it lost. I hate when that happens. Oh well...time to retype my thoughts.
First...thanks to those who have written on my guestbook. I check that periodically and definitely appreciate all of the support and prayers people have sent out.
Today is day 11 in this round of chemo therapy. Last time around I started losing my hair at day 15, so I don't have much time left to enjoy my beautiful head. This time of the cycle is pretty boring. At this point I've started to regain my energy and the frequent and uncomfortable trips to the bathroom have subsided. I take a bunch of pills every day, and give myself a shot of neupogen every night.
Neupogen is a drug that stimulates growth of neutrophils in the bone marrow. Since the chemotherapy can wipe my white blood cell count down to dangerous levels, this drug is important to help my immune system rebound. Giving myself the shot isn't such a bad deal. I just have to inject it into the skin and not the vein, and after a few dozen times it becomes pretty routine.
The drawback of the Neupogen shot is it causes bone pain. The pain is usually a dull pain that is frequently in my shin, thigh, shoulder, or jaw. Unfortunately for me today I had the pain in my lower back where the spine meets the pelvis. Not only was the pain in an uncomfortable place, but it was as sharp as I've ever felt. I spent the early morning shifting positions trying to get comfortable, but nothing seemed to work.
I don't care for drugs and usually try to tough things out. However, I decided to hit up the oxycodone that was prescribed to me. I took one pill in the morning and felt absolutely no effect from it. The pain was still sharp and I couldn't get comfortable to sit or lay down. Around noon when I was ready for another dose I decided to make it a double. That did the trick. I had a pretty good buzz going all afternoon, and while I couldn't sleep it off, I did manage to lay on my back in a semi-conscious daze. Hopefully I'll be able to get to sleep tonight without heading to the medicine cabinet tonight, but I don't think its going to happen. Well...at least everything else seems to be going well. I was able to do some grilling tonight and play baseball with Isaiah. So despite the pain I am getting back to normal a little bit. It will be great if I can stay energized and feeling good for the next week and a half.
I just spent a lot of time writing out a journal update to only have it lost. I hate when that happens. Oh well...time to retype my thoughts.
First...thanks to those who have written on my guestbook. I check that periodically and definitely appreciate all of the support and prayers people have sent out.
Today is day 11 in this round of chemo therapy. Last time around I started losing my hair at day 15, so I don't have much time left to enjoy my beautiful head. This time of the cycle is pretty boring. At this point I've started to regain my energy and the frequent and uncomfortable trips to the bathroom have subsided. I take a bunch of pills every day, and give myself a shot of neupogen every night.
Neupogen is a drug that stimulates growth of neutrophils in the bone marrow. Since the chemotherapy can wipe my white blood cell count down to dangerous levels, this drug is important to help my immune system rebound. Giving myself the shot isn't such a bad deal. I just have to inject it into the skin and not the vein, and after a few dozen times it becomes pretty routine.
The drawback of the Neupogen shot is it causes bone pain. The pain is usually a dull pain that is frequently in my shin, thigh, shoulder, or jaw. Unfortunately for me today I had the pain in my lower back where the spine meets the pelvis. Not only was the pain in an uncomfortable place, but it was as sharp as I've ever felt. I spent the early morning shifting positions trying to get comfortable, but nothing seemed to work.
I don't care for drugs and usually try to tough things out. However, I decided to hit up the oxycodone that was prescribed to me. I took one pill in the morning and felt absolutely no effect from it. The pain was still sharp and I couldn't get comfortable to sit or lay down. Around noon when I was ready for another dose I decided to make it a double. That did the trick. I had a pretty good buzz going all afternoon, and while I couldn't sleep it off, I did manage to lay on my back in a semi-conscious daze. Hopefully I'll be able to get to sleep tonight without heading to the medicine cabinet tonight, but I don't think its going to happen. Well...at least everything else seems to be going well. I was able to do some grilling tonight and play baseball with Isaiah. So despite the pain I am getting back to normal a little bit. It will be great if I can stay energized and feeling good for the next week and a half.
Nausea and Vomiting
FRIDAY, AUGUST 08, 2008 01:47 PM, CDT
Its Friday, which probably means the end of another work week to most people, but is just another day in my life right now. The good news is that I'm awake right now and feeling good.
Yesterday morning I got hit with some nausea. Its definitely an uncomfortable feeling to wake up to, so I tried to take some anti-nausea medicine to help quell the feeling. So I head downstairs with Isaiah to get some liquid and pills in me. I get the anti-nausea medication in my system before Isaiah asks for some blueberries. While dishing out blueberries for the lil guy I realize that things aren't going to stay down in my stomach. As soon as Isaiah got his berries, it was up the stairs for me and into the bathroom. Vomiting ensued!!!
That sucked! I'm a puker...always have been and always will. Throwing up doesn't bother me. However, usually if I'm feeling sick and throw up, I feel better after that. Nausea doesn't really ease up like that. The discomfort in the chest is still there desipte the heaving. And what benefit do I get from the nausea medication now that it has been expelled from my stomach and flushed down the toilet?
Luckily I remembered this experience from last September and had asked the nurse practicioner at NIH for Lorazepam, a drug that is prescribed for anxiety but also does a hell of a good job preventing nausea. I was able to take some of the Lorazepam, and drowsiness as a side effect is an understatement. I layed flat on my stomach, cause thats the only good position with the nausea, and fell asleep for the entire day.
When I woke up my child was missing. Fortunately he is just with his grandparents, who I assume are responsible for his care. My parents stopped by while I was passed, and I remember them saying something to me. I believe I responded as well, but they might not have heard my muffled thoughts with my head buried in a pillow. Thankfully they have helped out with Isaiah, who gets easily bored when Daddy sleeps all day and can't play around.
Well...I got out of the house to get my blood drawn today, and have been awake since the morning. Unfortunately I feel like my energy is waning and its time for another nap. Feeling like I am right now, its hard to believe that I worked like this last year. Looking back on it now I'm impressed how hard I worked through that, because it certainly isn't easy.
Its Friday, which probably means the end of another work week to most people, but is just another day in my life right now. The good news is that I'm awake right now and feeling good.
Yesterday morning I got hit with some nausea. Its definitely an uncomfortable feeling to wake up to, so I tried to take some anti-nausea medicine to help quell the feeling. So I head downstairs with Isaiah to get some liquid and pills in me. I get the anti-nausea medication in my system before Isaiah asks for some blueberries. While dishing out blueberries for the lil guy I realize that things aren't going to stay down in my stomach. As soon as Isaiah got his berries, it was up the stairs for me and into the bathroom. Vomiting ensued!!!
That sucked! I'm a puker...always have been and always will. Throwing up doesn't bother me. However, usually if I'm feeling sick and throw up, I feel better after that. Nausea doesn't really ease up like that. The discomfort in the chest is still there desipte the heaving. And what benefit do I get from the nausea medication now that it has been expelled from my stomach and flushed down the toilet?
Luckily I remembered this experience from last September and had asked the nurse practicioner at NIH for Lorazepam, a drug that is prescribed for anxiety but also does a hell of a good job preventing nausea. I was able to take some of the Lorazepam, and drowsiness as a side effect is an understatement. I layed flat on my stomach, cause thats the only good position with the nausea, and fell asleep for the entire day.
When I woke up my child was missing. Fortunately he is just with his grandparents, who I assume are responsible for his care. My parents stopped by while I was passed, and I remember them saying something to me. I believe I responded as well, but they might not have heard my muffled thoughts with my head buried in a pillow. Thankfully they have helped out with Isaiah, who gets easily bored when Daddy sleeps all day and can't play around.
Well...I got out of the house to get my blood drawn today, and have been awake since the morning. Unfortunately I feel like my energy is waning and its time for another nap. Feeling like I am right now, its hard to believe that I worked like this last year. Looking back on it now I'm impressed how hard I worked through that, because it certainly isn't easy.
Chemotherapy Update
WEDNESDAY, AUGUST 06, 2008 03:25 PM, CDT
Today is Wednesday...Day 6 in this round of chemotherapy. Yesterday I spent several hours at the hospital receiving the last of my chemotherapy. After that I had the PICC line, 52 cms of catheter, removed from my veins and was sent on my way. Since leaving the hospital on Friday, the process has felt pretty uneventful. It hasn't been that long since I had chemo, and it unfortunately rushes back into your consciousness quickly. While its a crappy experience, it feels almost normal to me.
Today I am exhausted. Part of the chemotherapy is taking a steroid called Prednisone. It gives me a huge hunger, which isn't a bad thing since I love to eat, and a lot of energy. However, my final dose of prednisone was last night, and this morning I could do nothing but sleep. Without the steroids in my system, I truly feel how much these drugs beat the body down. It sucks to feel worthless, and I've got some of that going on. I can still do some of the daddy stuff with Isaiah and help out a miniscule amount around the house, but not much.
Don't know what else to write. I think I could write a novel about how the chemo messes with the usual bodily functions, but I know not everybody will be interested in that. I think I'll keep the posting here clean and get back to napping.
Today is Wednesday...Day 6 in this round of chemotherapy. Yesterday I spent several hours at the hospital receiving the last of my chemotherapy. After that I had the PICC line, 52 cms of catheter, removed from my veins and was sent on my way. Since leaving the hospital on Friday, the process has felt pretty uneventful. It hasn't been that long since I had chemo, and it unfortunately rushes back into your consciousness quickly. While its a crappy experience, it feels almost normal to me.
Today I am exhausted. Part of the chemotherapy is taking a steroid called Prednisone. It gives me a huge hunger, which isn't a bad thing since I love to eat, and a lot of energy. However, my final dose of prednisone was last night, and this morning I could do nothing but sleep. Without the steroids in my system, I truly feel how much these drugs beat the body down. It sucks to feel worthless, and I've got some of that going on. I can still do some of the daddy stuff with Isaiah and help out a miniscule amount around the house, but not much.
Don't know what else to write. I think I could write a novel about how the chemo messes with the usual bodily functions, but I know not everybody will be interested in that. I think I'll keep the posting here clean and get back to napping.
Disappointg news and a change of plans
FRIDAY, AUGUST 01, 2008 10:48 PM, CDT
Finally back at home after a very long day and a half. My day started on Thursday with a Pet Scan before my meeting with my treatment team. It was a pain in the ass, having to remain motionless with my arms above my head for 40 minutes. However, it was done with and I just had time to kill for a few hours. It wasn't so bad wasting time at the hospital. It was still early in the day and I was feeling well.
At 1:30 my Dad and Kate met up with me for my appointment. Things started off well, but again the team took a bit longer than expected to come back in. Kate began to feel nervous again about their news.
When they came back in, her thoughts were correct. The results of the Pet Scan showed signs of cancer on a right rib and at the bottom of my left lung. This was a change from what the doctors were expecting and what I went through the first time around with treatment. It was explained that my treatment plan needed to change now that the cancer was not isolated to the mediastinum. If the cancer was isolated to one spot, it would be easy to treat with radiation to eliminate it. Their is no connection between the lymphatic system and the bones, so it was explained that the cancer had to have spread through the blood. Even if the chemotherapy gets rid of the cancer activity in the rib and lung areas, it is presumed that ther could be small traces of cancer cells anywhere in the body at this point. Therefore the radiation process will be of no use, and the secondary intervention after the chemotherapy will be a bone marrow transplant.
This is the first time that a bone marrow transplant has been brougt up, so its not something I know a lot about yet. There are two general types of transplants that are used...autologus and allogeneic. My lead physician met with us and explained that while my current tumor looks like Hodgkins disease, he would not treat it like that. A HD relapse would usually be treated with an autologus transplant, which uses my own stem cells. His belief after watching how my tumor has attacked my body is that this treatment would not work.
So an allogeneic transplant, of which there are two options, is being pursued. I had my blood drawn last night to be used to find a match. With these type of bone marrow transplants, there is about a 25 percent chance that a sibling would be a match. 1 in 4 ain't bad...however, I have 4 siblings who because of adoption will not be matches. My dad helped me get papers in today to the courts to contact my birth mother. From the history I know about, it seems unlikely that my birth-parents would have had another child together. My doctor was not optimistic that a half sibling would have any better a chance of matching than anybody else in the general bone marrow donor pool. My brother Mike, people at my dad's workplace, and Kate's dad have already asked about getting tested to be a donor. Its unlikely that anybody who signs up now would a match for me, but I'll probably be relying on somebody who signed up for another person. So I'd encourage anybody who feels the desire to help anybody with this type of condition to become a potential bone marrow donor.
What I was told is that although the transplant takes just a few hours like a simple blood transfusion, the hospital stay will likely last from two weeks to forty days. Thats a hell of a lot of time to spend away from home. I spent 3 nights in the hospital back in January, and I felt like I was losing my mind then. So I can't imagine being away from home and Isaiah that long. However, its what I'll have to do. Kate and I will manage, however, I know it will be hard on her to not have me around.
The good news from yesterday is that I was able to get started on chemo. The change of plans from radiation to bone marrow transplant means an increase from two rounds of chemo to probably four. It is supposed to take three months for the transplant to fall in line, so the doctors want me to remain in treatment up until that point. Hopefully the EPOCH-C treatment will do in this tumor like the EPOCH-R did the first one. I took the Campath last night and had chills and a fever. My temperature went over 102 at one point, but came down fairly quickly over the next few hours. I didn't sleep for a few hours despite being exhausted. However, knowing how the chemo makes me feel I have no worries about sleeping a lot over the next few days. The doctors felt that my response to the Campath was pretty normal. Some people get a really bad rash as well with the infusion, but I seem to have avoided that. I was also told by my research nurse that the side effects don't always come back with the other rounds of Campath infusion. So if last night was as bad as it gets with this treatment, then I'll be much pleased.
After the Campath I got hooked up to the EPOCH. The EPOCH treatment is outpatient, which allows me to be at home with a daily bag refill every 24 hours for the next four days. It felt great to be home and see Isaiah tonight and to have dinner with Kate and my parents on the deck. It beats sitting in a small, uncomfortable hospital bed and eating the same food over and over again. So I'm back to taking one day at a time. The long term plan has changed, but I still have to take one day at a time and get through this with a great attitude. Thanks for all of the support from everybody who has read and commented. All of the prayers and well wishes definitely help the family and I out.
Finally back at home after a very long day and a half. My day started on Thursday with a Pet Scan before my meeting with my treatment team. It was a pain in the ass, having to remain motionless with my arms above my head for 40 minutes. However, it was done with and I just had time to kill for a few hours. It wasn't so bad wasting time at the hospital. It was still early in the day and I was feeling well.
At 1:30 my Dad and Kate met up with me for my appointment. Things started off well, but again the team took a bit longer than expected to come back in. Kate began to feel nervous again about their news.
When they came back in, her thoughts were correct. The results of the Pet Scan showed signs of cancer on a right rib and at the bottom of my left lung. This was a change from what the doctors were expecting and what I went through the first time around with treatment. It was explained that my treatment plan needed to change now that the cancer was not isolated to the mediastinum. If the cancer was isolated to one spot, it would be easy to treat with radiation to eliminate it. Their is no connection between the lymphatic system and the bones, so it was explained that the cancer had to have spread through the blood. Even if the chemotherapy gets rid of the cancer activity in the rib and lung areas, it is presumed that ther could be small traces of cancer cells anywhere in the body at this point. Therefore the radiation process will be of no use, and the secondary intervention after the chemotherapy will be a bone marrow transplant.
This is the first time that a bone marrow transplant has been brougt up, so its not something I know a lot about yet. There are two general types of transplants that are used...autologus and allogeneic. My lead physician met with us and explained that while my current tumor looks like Hodgkins disease, he would not treat it like that. A HD relapse would usually be treated with an autologus transplant, which uses my own stem cells. His belief after watching how my tumor has attacked my body is that this treatment would not work.
So an allogeneic transplant, of which there are two options, is being pursued. I had my blood drawn last night to be used to find a match. With these type of bone marrow transplants, there is about a 25 percent chance that a sibling would be a match. 1 in 4 ain't bad...however, I have 4 siblings who because of adoption will not be matches. My dad helped me get papers in today to the courts to contact my birth mother. From the history I know about, it seems unlikely that my birth-parents would have had another child together. My doctor was not optimistic that a half sibling would have any better a chance of matching than anybody else in the general bone marrow donor pool. My brother Mike, people at my dad's workplace, and Kate's dad have already asked about getting tested to be a donor. Its unlikely that anybody who signs up now would a match for me, but I'll probably be relying on somebody who signed up for another person. So I'd encourage anybody who feels the desire to help anybody with this type of condition to become a potential bone marrow donor.
What I was told is that although the transplant takes just a few hours like a simple blood transfusion, the hospital stay will likely last from two weeks to forty days. Thats a hell of a lot of time to spend away from home. I spent 3 nights in the hospital back in January, and I felt like I was losing my mind then. So I can't imagine being away from home and Isaiah that long. However, its what I'll have to do. Kate and I will manage, however, I know it will be hard on her to not have me around.
The good news from yesterday is that I was able to get started on chemo. The change of plans from radiation to bone marrow transplant means an increase from two rounds of chemo to probably four. It is supposed to take three months for the transplant to fall in line, so the doctors want me to remain in treatment up until that point. Hopefully the EPOCH-C treatment will do in this tumor like the EPOCH-R did the first one. I took the Campath last night and had chills and a fever. My temperature went over 102 at one point, but came down fairly quickly over the next few hours. I didn't sleep for a few hours despite being exhausted. However, knowing how the chemo makes me feel I have no worries about sleeping a lot over the next few days. The doctors felt that my response to the Campath was pretty normal. Some people get a really bad rash as well with the infusion, but I seem to have avoided that. I was also told by my research nurse that the side effects don't always come back with the other rounds of Campath infusion. So if last night was as bad as it gets with this treatment, then I'll be much pleased.
After the Campath I got hooked up to the EPOCH. The EPOCH treatment is outpatient, which allows me to be at home with a daily bag refill every 24 hours for the next four days. It felt great to be home and see Isaiah tonight and to have dinner with Kate and my parents on the deck. It beats sitting in a small, uncomfortable hospital bed and eating the same food over and over again. So I'm back to taking one day at a time. The long term plan has changed, but I still have to take one day at a time and get through this with a great attitude. Thanks for all of the support from everybody who has read and commented. All of the prayers and well wishes definitely help the family and I out.
EPOCH-C
WEDNESDAY, JULY 30, 2008 09:38 PM, CDT
I didn't go to the hospital today, but I got a lot of information. My parents went to meet with my treatment team, and I chose not to go so I could handle other business. I also will be spending a lot of time at the hospital tommorow, so I enjoyed not being there today.
The report back from my parents was that the biopsy last Friday gave good information. The nature of Grey Zone lymphoma is that it has signs of Hodgkins Disease and Non Hodgkins Lymphoma(NHL). My current tumor did not have signs of CD20 cells, which are the marker for B cell lymphoma. So the treatment I went through last year appears to have been successful in eliminating the aspects of my tumor that more closely resembled NHL. Therefore my current tumor is closer to Hodgkins Disease than the previous growth I had last year. However, the doctors are still classifying my tumor as Grey Zone lymphoma and not Hodgkins disease.
The best news about receiving results from the biopsy is that I should be able to start treatment tommorow. I will continue to receive EPOCH, the same base regimen that I received last time. I also received Rituxan last year, but don't think I will be receiving it this time around. Rituxan is an CD20 antibody, and since there is no presence of CD20 cells in my tissue sample, it doesn't appear to be necessary. There was evidence of CD52 cells, which are treated in Leukemia patients with Campath. The plan from my treatment team is to include Campth with this regimen of treatment. Campath has a lot of side effects and reading about them doesn't give me a reassuring feeling. However, my father explained that Leukemia patients will receive about 1000 mg of Campath over the course of their treatment, and I will be receiving only 30 mg per cycle. I am also younger than most Leukemia patients, so the likelihood of serious side effects should not be as big of an issue with my treatment. That was confusing and the best I could describe this issue. The science that goes into this process is truly amazing.
So tommorow is my big day. All of the talk ends, and I get down to curing this bitch for good. I have a Pet Scan tommorow, which isn't a big deal after undergoing two of these in the last year. My veins get filled with radioactive liquid, and some extremely detailed pictures of the cancer in my body will be taken. This should give the doctors an even better idea of what they are dealing with. I have a meeting with my doctors in the afternoon, and barring any unforseen obstacles I will have a PICC line inserted into my arm sometime before or after that meeting. That will leave some tubes hanging from my arm...kind of strange.
I'll start on my first medication, Prednisone, which is a steroid. That drug is legit, and makes me crave food like an addict. It helped me get back to a healthy weight last time around, but since I haven't shrank this time around, I wonder if it will make me put on extra weight. Oh well...there are worse side effects. Twelve hours after I take the prednisone they will start me on the Campath for 12 hours. That will keep me in the hospital overnight tommorow, which is usually not a fun thing. Hopefully I'll be able to sleep through it. After that I'll get my fanny pack and chemo bag for the next 4 days of chemotherapy joy!
Today has brought me several different feelings. I'm happy because I know I'll be able to start treatment right away and not let this cancer grow any more inside of me. However, the reality of all of the crappy issues I have to deal with is finally setting in. Well...I've got no other choice, so here it goes. Thanks for your prayers and support!
I didn't go to the hospital today, but I got a lot of information. My parents went to meet with my treatment team, and I chose not to go so I could handle other business. I also will be spending a lot of time at the hospital tommorow, so I enjoyed not being there today.
The report back from my parents was that the biopsy last Friday gave good information. The nature of Grey Zone lymphoma is that it has signs of Hodgkins Disease and Non Hodgkins Lymphoma(NHL). My current tumor did not have signs of CD20 cells, which are the marker for B cell lymphoma. So the treatment I went through last year appears to have been successful in eliminating the aspects of my tumor that more closely resembled NHL. Therefore my current tumor is closer to Hodgkins Disease than the previous growth I had last year. However, the doctors are still classifying my tumor as Grey Zone lymphoma and not Hodgkins disease.
The best news about receiving results from the biopsy is that I should be able to start treatment tommorow. I will continue to receive EPOCH, the same base regimen that I received last time. I also received Rituxan last year, but don't think I will be receiving it this time around. Rituxan is an CD20 antibody, and since there is no presence of CD20 cells in my tissue sample, it doesn't appear to be necessary. There was evidence of CD52 cells, which are treated in Leukemia patients with Campath. The plan from my treatment team is to include Campth with this regimen of treatment. Campath has a lot of side effects and reading about them doesn't give me a reassuring feeling. However, my father explained that Leukemia patients will receive about 1000 mg of Campath over the course of their treatment, and I will be receiving only 30 mg per cycle. I am also younger than most Leukemia patients, so the likelihood of serious side effects should not be as big of an issue with my treatment. That was confusing and the best I could describe this issue. The science that goes into this process is truly amazing.
So tommorow is my big day. All of the talk ends, and I get down to curing this bitch for good. I have a Pet Scan tommorow, which isn't a big deal after undergoing two of these in the last year. My veins get filled with radioactive liquid, and some extremely detailed pictures of the cancer in my body will be taken. This should give the doctors an even better idea of what they are dealing with. I have a meeting with my doctors in the afternoon, and barring any unforseen obstacles I will have a PICC line inserted into my arm sometime before or after that meeting. That will leave some tubes hanging from my arm...kind of strange.
I'll start on my first medication, Prednisone, which is a steroid. That drug is legit, and makes me crave food like an addict. It helped me get back to a healthy weight last time around, but since I haven't shrank this time around, I wonder if it will make me put on extra weight. Oh well...there are worse side effects. Twelve hours after I take the prednisone they will start me on the Campath for 12 hours. That will keep me in the hospital overnight tommorow, which is usually not a fun thing. Hopefully I'll be able to sleep through it. After that I'll get my fanny pack and chemo bag for the next 4 days of chemotherapy joy!
Today has brought me several different feelings. I'm happy because I know I'll be able to start treatment right away and not let this cancer grow any more inside of me. However, the reality of all of the crappy issues I have to deal with is finally setting in. Well...I've got no other choice, so here it goes. Thanks for your prayers and support!
Thoughts leading up to Chemotherapy
MONDAY, JULY 28, 2008 10:50 PM, CDT
So the past weekend was spent getting used to the fact that I have cancer again. I'm very lucky to have my parents living nearby, and they will do anything to help my family and I out. We spent a day out at a petting zoo followed by lunch on Saturday. It was a great way to spend time before the chemo knocks me out. We had a big discussion about the new regimen my team of doctors suggested on Thursday.
I received EPOCH-R last year, and did very well with that. The doctors were extremely confident about my remission, but of course here I am 6 months later with another tumor in my chest. They suggested an experimental regimen that is similar to my previous one called EPOCH-CR. The extra "C" is for Campath. Its a drug that is used to treat a type of Leukemia, but has not had much use with Lymphoma patients. It has a lot of side effects, which aren't very pleasing to look at. While I respect my team's reccomendations, I don't want to undergo any extra treatment than I need. Its hard to tell if this treatment would have any extra benefit that I wouldn't get from just repeating EPOCH-R again. I'm basically stuck comparing risk and reward of this Campath treatment, but with no published research about Campath and lymphoma, and just 6 previous patients who have undergone this treatment, its hard to understand if there is a realistic benefit to making myself as sick as Campath will. Its a decision that I have not yet made, despite the fact that I might start chemotherapy in less than 3 days.
Today I stopped by NIH for my bone marrow biopsy. This procedure involved me lying on my stomach while a very large needle is placed against my hip bone, then twisted in order to access the bone marrow cavity. At that point the bone marrow is sucked out.
Last year I had a BMB, and it was extremely painful while the marrow was sucked out. I don't think the body was designed to allow sucking of material located inside the bone. The doctor who did the procedure today was generous with the lidocaine, and it wasn't as painful as last year. However, it is still eery to feel the marrow being sucked out of my hip, despite the absence of severe pain.
I also had my echocardiogram to check on my heart. This is a pretty boring procedure when compared to all of the other stuff I have to go through. I didn't have any heart problems last year, and hopefully I won't this time around. Since the tumor is smaller this time, I'm confident there will be no damage there at this time.
I didn't receive any information about my biopsy from last Friday, so hopefully I'll get some news tommorrow. My next scheduled appointment is Thursday, when I'll have a Pet Scan and meet with the doctors to discuss all of my diagnostic tests. So Tuesday and Wednesday appear to be free of anything cancer related as of right now, but I know enough about this disease to know that things might change any day.
So the past weekend was spent getting used to the fact that I have cancer again. I'm very lucky to have my parents living nearby, and they will do anything to help my family and I out. We spent a day out at a petting zoo followed by lunch on Saturday. It was a great way to spend time before the chemo knocks me out. We had a big discussion about the new regimen my team of doctors suggested on Thursday.
I received EPOCH-R last year, and did very well with that. The doctors were extremely confident about my remission, but of course here I am 6 months later with another tumor in my chest. They suggested an experimental regimen that is similar to my previous one called EPOCH-CR. The extra "C" is for Campath. Its a drug that is used to treat a type of Leukemia, but has not had much use with Lymphoma patients. It has a lot of side effects, which aren't very pleasing to look at. While I respect my team's reccomendations, I don't want to undergo any extra treatment than I need. Its hard to tell if this treatment would have any extra benefit that I wouldn't get from just repeating EPOCH-R again. I'm basically stuck comparing risk and reward of this Campath treatment, but with no published research about Campath and lymphoma, and just 6 previous patients who have undergone this treatment, its hard to understand if there is a realistic benefit to making myself as sick as Campath will. Its a decision that I have not yet made, despite the fact that I might start chemotherapy in less than 3 days.
Today I stopped by NIH for my bone marrow biopsy. This procedure involved me lying on my stomach while a very large needle is placed against my hip bone, then twisted in order to access the bone marrow cavity. At that point the bone marrow is sucked out.
Last year I had a BMB, and it was extremely painful while the marrow was sucked out. I don't think the body was designed to allow sucking of material located inside the bone. The doctor who did the procedure today was generous with the lidocaine, and it wasn't as painful as last year. However, it is still eery to feel the marrow being sucked out of my hip, despite the absence of severe pain.
I also had my echocardiogram to check on my heart. This is a pretty boring procedure when compared to all of the other stuff I have to go through. I didn't have any heart problems last year, and hopefully I won't this time around. Since the tumor is smaller this time, I'm confident there will be no damage there at this time.
I didn't receive any information about my biopsy from last Friday, so hopefully I'll get some news tommorrow. My next scheduled appointment is Thursday, when I'll have a Pet Scan and meet with the doctors to discuss all of my diagnostic tests. So Tuesday and Wednesday appear to be free of anything cancer related as of right now, but I know enough about this disease to know that things might change any day.
My Lymphoma Journey from 2007 until July 2008
FRIDAY, JULY 25, 2008 11:33 PM, CDT
My name is John and I'm twenty-six years old. I'm married to Kate and the father of Isaiah, two years old.
I'm a pretty big guy who played football in college. I love to eat and drink, and I put on a lot of weight, about 40 pounds, between when I stopped playing football in 2003 and my heaviest in September 2006. I can blame the gain on exercising less, gaining sympathy weight during my wife's pregnancy and when Isaiah was a newborn, and a general lack of movement while commuting an average of three hours a day. At that point I knew I had to make a conscious effort to lose weight. I dropped about 15 pounds before the end of '06 and was planning on dropping more.
Two things happened during the late winter and early spring in 2007. The first was that I continued to lose weight. I wasn't working out as often, but my wife and I had bought our first home. This cut my 2-way commute from about 3 hours to 45 minutes each day. My son had also started walking and running. So I attributed my continued weight loss to a change in lifestyle that included less time sitting in the car and holding my infant son, to more time at home running after my toddler.
The other thing that happened was that I started itching my legs. I would find myself showering at night after getting home from waiting tables, and furiously itching my ankles. It got to the point where I was breaking the skin and scabs started to form on my ankles and lower legs. It wasn't normal, but as a tough guy I shook it off like it was no big deal. So during the first half of 2007 I continued to lose weight and itch my legs, all the while feeling completely fine.
It June, 2007 I began coughing. I remember hacking up green mucas which I know is a sign of bronchitis. I get this type of cough once or twice a year and knew it would go away in a week or so. It went away for a period of time, but I started coughing again towards the end of June.
This cough was different though. I wasn't coughing up mucas, but it was a violent, dry cough. I thought that whatever infection I had probably wasn't cured and just came back. I worked through the cough and didn't make an issue of it. During the summer my coworkers constantly made comments about how I was losing weight, and I had no answer when they asked how I was doing it.
My family took a vacation to Florida in August and I felt great. Still coughed a little...still itched a little. But there were no other problems. When we returned my wife and I had dinner with my parents who hadn't seen us in about a month. My dad's a doctor and was worried about the cough and how I looked. Apparently I had started getting pale. My wife had been bother me about the cough after it didn't go away for about a month, and my parents wanted me to get checked out as well. My dad the doctor was worried I might have picked up TB. So I found a local doctor and scheduled an appointment in early September. Between this point and when I saw the doctor, two new things popped up. One was a rash that itched on my sternum. The other was night sweats. I began sweating through several shirts and needing to rotate pillows throughout the night. I didn't get much sleep.
When I went to my Doctor's appointment I told him everything that was going on, and he didn't really share anything with me. He ran a TB skin test just in case, but also sent me for a chest X-ray. This was on a Saturday morning, and I was able to get in for the X-ray at another location just before they closed at noon. The X-ray tech asked if I was having a hard time breathing after he took the image. I told him "No."
On Monday I got a call from my Doctor that a mass was found next to my lung. He wanted to schedule a CT scan as soon as possible. I called up my doctor father, who is not the type of person to wait around to do things. My father contacted my local doctor, and then used his connections at the University of Maryland to have my seen on Wednesday by Dr. Meisenberg at the Greenbaum Cancer Center. Dr. Meisenberg was a great doctor, and explained that I had a mediastinal mass that was most likely lymphoma. He believed I had Hodgkins disease because of my B symptoms(itching, coughing, weight loss, and night sweats). I had an "Aha" type of moment putting together all of my symptoms with what was happening inside my body.
After this meeting on Wednesday I was scheduled for a biopsy on Friday. It was crazy to me that I had just gone in for an appointment on Saturday not knowing what was wrong but not expecting anything too serious. The biopsy was fine. I had lots of support from my family and spent the night in the hospital. I spent that weekend resting with a lot of attention from those who were around me.
During the next week we got word that the biopsy was inconclusive. Another biopsy was scheduled for that week, and I went under the knife again at University of Maryland. During this biopsy they got a better tissue sample, but the pathologists at Maryland were unsure about how the label the disease. My father and Dr. Meisenberg each independently reached out to colleagues at NIH. Slides were sent to NIH and it was determined that I had a rare lymphoma which has just recently started to be studied called Grey Zone Lymphoma.
When a diagnosis of Hodgkins disease is made, the pathologist will look for Reed Sternberg cells. These cells are a marker for that disease. For Non-Hodgkins Lymphoma CD20 cells are the primary marker. My tumor sample was interesting in that it contained both of these markers. Apparently my tumor has signs of both Hodgkins Disease and NHL. This is what they refer to as the grey zone. Its not a black and white diagnosis, but my tumor is somewhere in between. My father's connection at NIH suggessted meeting with the same doctor who Dr. Meisenberg has been consulting with. After the results of this second biopsy were fully understood, we were referred to Dr. Wyndham Wilson at NIH.
NIH is a unique place. It contains a fully functioning hospital, but it exists solely for research. It is funded by the federal government and payment is not required by patients. American taxpayers(THANKS EVERYBODY) foot the bill for significant medical research. Luckily for me I was able to fit into a current research study that was going on. The research study planned to administer EPOCH-R as a treatment regimen. EPOCH-R is an aggressive form of chemo-therapy, and the doctors' study strives to cure NHL and some with Grey Zone lymphoma with this therapy without the use of radiation. Skipping radiation sounded like a good plan to me. I agreed to the EPOCH-R treatment regimen and got started quickly.
EPOCH-R is unique because the patient receives a continuous injection of medicine for over 96 hours. I would start getting my chemotherapy on a Friday and wouldn't be done until Tuesday. The cool part is that most patients don't have to stay at the hospital. I was given a portable pump that was hooked up to an IV bag full of drugs. I carried the drugs around in a fanny pack while a tube led to a PICC(Peripherally Inserted Central Catheter) line in my arm. The PICC line essentially took the drugs through my vein and right into my heart. From there the drugs would be pumped throughout my body...slowly killing cells in my body.
The first round of chemo wasn't so bad. The biggest problem was going to the bathroom the week after chemo ended. I won't go into details but believe me it wasn't pleasant. Before I started treatment I had gone down to about 200 pounds. I hadn't been that small since my sophomore year in high school when I was still growing. I lost over 50 pounds in less than 6 months. One of the drugs I was on was Prednisone...a steroid. That drug made me eat like crazy. Unfortunately my taste buds were damaged by the chemo, so most things I ate required a lot of hot sauce for me to taste things. I started gaining weight again immediately. Its a great thing to gain weight and have people feel ecstatic for you!
My night sweats, itching, and coughing also stopped almost instantaneously. That EPOCH-R didn't mess around. However, I did begin to lose some sensitivity in my fingertips and my hair started falling off around day 15. I cut it short, but didn't go quite bald. It was kind of cool...I didn't lose all of my hair until after chemo was over. The nurses were shocked along the way that I wasn't losing it all through treatment.
Most rounds of chemo were tolerable. I had 6 of them scheduled and they lasted 21 days. I worked at school through this, and some of my coworkers were amazed and inspired. The students had a limited understanding of things, but loved to see the tubes coming out of my arm. I wasn't myself but I was getting by. After work though I would often come home and nap immediately. There were nights where I went to bed before 7 and didn't wake up until 7 the next morning.
I missed very few days early on, but my treatment was dose adjusted. That meant that each round I would be getting a stronger dose until I became neutropenic. Neutropenia is a condition where there is a lack of white blood cells. I didn't get sick through the first 4 cycles and had been doing fairly well. Unfortunately the 5th cycle fell over the Christmas holiday. The 25th was a Tuesday, which meant I had to spend a couple of hours in the hospital on Christmas. It wasn't all bad though. My family was at home and we had a great time. However, I finally became neutropenic the next week. My wife and I were planning a quiet New Year's Eve celebration together when I started getting a fever. It didn't come down after about 2 hours, and I was told to come in to the hospital. I spent the next 4 nights there and had an awful time. Sleep did not come easily if it came at all. I felt like an insomniac, and it was crappy having to eat only when the meal service was available. Luckily I did not get sick on the 6th cycle.
On January 31, 2008 I went in for my appointment after my 6th cycle. I had gotten back to a weight I felt comfortable at and was feeling good. I had a Pet Scan that showed no signs of disease, and I was declared to be in remission. The doctors seemed excited by my results, and my family and I celebrated my successful treatment. I lost my hair at that point, but my energy came back. At school I had more energy to deal with the kids. I started working my 2nd job waiting tables again, and had fun doing that. I no longer had to worry about picking up my son and being cautious with my health. I bought a new bike for the first time since I was a teenager and had fun times with that. In April I went in for my 3 month checkup and the doctors said the scar tissue where my tumor had been appeared to be shrinking even more. Things were great.
During the second week of June, 2008 I began itching my legs. I became angry but did not share it with anybody. I knew this wasn't a typical kind of itch. It was the same itch I had felt the previous year before my diagnosis. I remember telling myself, "It's Back." I knew it. However, I wasn't ready to share it. My family was going to Oregon for my cousin's wedding the next week, and I knew if I mentioned it or did anything about it, my family would have a terrible time on that trip. I forget how it came up, but my wife said something that made me mention it to her. She was obviously upset.
We went to Oregon and had a great time. During that trip we made plans to visit my sister for her 30th birthday around the 4th of July. I was itching more, but was in denial. Initially I started denying it so that I wouldn't cause my famil anxiety. I still felt great and there were no other pressing symptoms. I was aware of my denial at first. After returning from Florida I had started to believe that this wasn't a relapse. By staying silent I had put it in the back of my mind. My father had noticed my legs and had asked, and I told him what was going on. I know he wanted me to call the doctors immediately. My wife wanted me to call them as well. I supported my denial by reading about other survivors who continue to feel itching and get clean bills of health. It was about two weeks until my appointment, so I didn't make the call.
My six month checkup was July 24th. I had been nervous two nights before and slept little. The day of the appointment though I had no worries. My wife was with me and my father was flying back from overseas at the time. The nurse practicioner who sees me tried to find reasons, like travel, being outdoors, and staying in a hotel for my itching. I tried to let him know that I knew these weren't the reasons. He appeared nervous. While it is usually just a few minutes while the doctors consult and we are alone in the office, this time it took about 20 to 30 minutes. My wife knew at this time that it was bad news.
The research team came in and gave us the bad news. I didn't feel like it was bad news at this point. I was accepting what was going on. I asked a lot of questions...something I was accused of doing too little of the first time around. The situation and course of treatment were explained. My tumor had regrown to about 7 cms across. It was initially 10 by 10 when I was diagnosed a year ago. The plan right now is for two treatments of EPOCH-CR. This will be similar to my last treatment, except for the addition of Campath, a drug used to treat Leukemia patients. The team explained that they have only treated 6 people with this regimen before, so I will be one of the first guinea pigs to get this treatment. The Campath will knock out my CD4 cells, which will make me prone to infection. My father the AIDS researcher described that I'll pretty much be like an AIDS patient on this medicine.
After the tumor is decreased in size, I will have 5 to 6 weeks of radiation. That sucks! Avoiding radiation was the whole point of this trial to begin with. The research team explained that less than 10% of people with DLBC lymphoma have relapsed on this study. However, about half of Grey Zone patients, who are a small sample size, have had relapses. So far everybody who has relapsed on this regimen has gone into remission again with radiation. So it looks like my experience is helping to create a standard protocol for treating Grey Zone lymphoma. I'll be the first one in this study to get EPOCH-CR. I know I can't explain why I have this disease, but I feel like I have it because I'm strong enough to get through it. If my experience can help researchers help others down the line, then I am extremely happy.
This took a while to write down my experience so far. I have appointments scheduled next week, and if the results of the needle biopsy I had today are good, then I will start chemo within the week. Hopefully I will have the energy and desire to keep this blog up during my treatment.
My name is John and I'm twenty-six years old. I'm married to Kate and the father of Isaiah, two years old.
I'm a pretty big guy who played football in college. I love to eat and drink, and I put on a lot of weight, about 40 pounds, between when I stopped playing football in 2003 and my heaviest in September 2006. I can blame the gain on exercising less, gaining sympathy weight during my wife's pregnancy and when Isaiah was a newborn, and a general lack of movement while commuting an average of three hours a day. At that point I knew I had to make a conscious effort to lose weight. I dropped about 15 pounds before the end of '06 and was planning on dropping more.
Two things happened during the late winter and early spring in 2007. The first was that I continued to lose weight. I wasn't working out as often, but my wife and I had bought our first home. This cut my 2-way commute from about 3 hours to 45 minutes each day. My son had also started walking and running. So I attributed my continued weight loss to a change in lifestyle that included less time sitting in the car and holding my infant son, to more time at home running after my toddler.
The other thing that happened was that I started itching my legs. I would find myself showering at night after getting home from waiting tables, and furiously itching my ankles. It got to the point where I was breaking the skin and scabs started to form on my ankles and lower legs. It wasn't normal, but as a tough guy I shook it off like it was no big deal. So during the first half of 2007 I continued to lose weight and itch my legs, all the while feeling completely fine.
It June, 2007 I began coughing. I remember hacking up green mucas which I know is a sign of bronchitis. I get this type of cough once or twice a year and knew it would go away in a week or so. It went away for a period of time, but I started coughing again towards the end of June.
This cough was different though. I wasn't coughing up mucas, but it was a violent, dry cough. I thought that whatever infection I had probably wasn't cured and just came back. I worked through the cough and didn't make an issue of it. During the summer my coworkers constantly made comments about how I was losing weight, and I had no answer when they asked how I was doing it.
My family took a vacation to Florida in August and I felt great. Still coughed a little...still itched a little. But there were no other problems. When we returned my wife and I had dinner with my parents who hadn't seen us in about a month. My dad's a doctor and was worried about the cough and how I looked. Apparently I had started getting pale. My wife had been bother me about the cough after it didn't go away for about a month, and my parents wanted me to get checked out as well. My dad the doctor was worried I might have picked up TB. So I found a local doctor and scheduled an appointment in early September. Between this point and when I saw the doctor, two new things popped up. One was a rash that itched on my sternum. The other was night sweats. I began sweating through several shirts and needing to rotate pillows throughout the night. I didn't get much sleep.
When I went to my Doctor's appointment I told him everything that was going on, and he didn't really share anything with me. He ran a TB skin test just in case, but also sent me for a chest X-ray. This was on a Saturday morning, and I was able to get in for the X-ray at another location just before they closed at noon. The X-ray tech asked if I was having a hard time breathing after he took the image. I told him "No."
On Monday I got a call from my Doctor that a mass was found next to my lung. He wanted to schedule a CT scan as soon as possible. I called up my doctor father, who is not the type of person to wait around to do things. My father contacted my local doctor, and then used his connections at the University of Maryland to have my seen on Wednesday by Dr. Meisenberg at the Greenbaum Cancer Center. Dr. Meisenberg was a great doctor, and explained that I had a mediastinal mass that was most likely lymphoma. He believed I had Hodgkins disease because of my B symptoms(itching, coughing, weight loss, and night sweats). I had an "Aha" type of moment putting together all of my symptoms with what was happening inside my body.
After this meeting on Wednesday I was scheduled for a biopsy on Friday. It was crazy to me that I had just gone in for an appointment on Saturday not knowing what was wrong but not expecting anything too serious. The biopsy was fine. I had lots of support from my family and spent the night in the hospital. I spent that weekend resting with a lot of attention from those who were around me.
During the next week we got word that the biopsy was inconclusive. Another biopsy was scheduled for that week, and I went under the knife again at University of Maryland. During this biopsy they got a better tissue sample, but the pathologists at Maryland were unsure about how the label the disease. My father and Dr. Meisenberg each independently reached out to colleagues at NIH. Slides were sent to NIH and it was determined that I had a rare lymphoma which has just recently started to be studied called Grey Zone Lymphoma.
When a diagnosis of Hodgkins disease is made, the pathologist will look for Reed Sternberg cells. These cells are a marker for that disease. For Non-Hodgkins Lymphoma CD20 cells are the primary marker. My tumor sample was interesting in that it contained both of these markers. Apparently my tumor has signs of both Hodgkins Disease and NHL. This is what they refer to as the grey zone. Its not a black and white diagnosis, but my tumor is somewhere in between. My father's connection at NIH suggessted meeting with the same doctor who Dr. Meisenberg has been consulting with. After the results of this second biopsy were fully understood, we were referred to Dr. Wyndham Wilson at NIH.
NIH is a unique place. It contains a fully functioning hospital, but it exists solely for research. It is funded by the federal government and payment is not required by patients. American taxpayers(THANKS EVERYBODY) foot the bill for significant medical research. Luckily for me I was able to fit into a current research study that was going on. The research study planned to administer EPOCH-R as a treatment regimen. EPOCH-R is an aggressive form of chemo-therapy, and the doctors' study strives to cure NHL and some with Grey Zone lymphoma with this therapy without the use of radiation. Skipping radiation sounded like a good plan to me. I agreed to the EPOCH-R treatment regimen and got started quickly.
EPOCH-R is unique because the patient receives a continuous injection of medicine for over 96 hours. I would start getting my chemotherapy on a Friday and wouldn't be done until Tuesday. The cool part is that most patients don't have to stay at the hospital. I was given a portable pump that was hooked up to an IV bag full of drugs. I carried the drugs around in a fanny pack while a tube led to a PICC(Peripherally Inserted Central Catheter) line in my arm. The PICC line essentially took the drugs through my vein and right into my heart. From there the drugs would be pumped throughout my body...slowly killing cells in my body.
The first round of chemo wasn't so bad. The biggest problem was going to the bathroom the week after chemo ended. I won't go into details but believe me it wasn't pleasant. Before I started treatment I had gone down to about 200 pounds. I hadn't been that small since my sophomore year in high school when I was still growing. I lost over 50 pounds in less than 6 months. One of the drugs I was on was Prednisone...a steroid. That drug made me eat like crazy. Unfortunately my taste buds were damaged by the chemo, so most things I ate required a lot of hot sauce for me to taste things. I started gaining weight again immediately. Its a great thing to gain weight and have people feel ecstatic for you!
My night sweats, itching, and coughing also stopped almost instantaneously. That EPOCH-R didn't mess around. However, I did begin to lose some sensitivity in my fingertips and my hair started falling off around day 15. I cut it short, but didn't go quite bald. It was kind of cool...I didn't lose all of my hair until after chemo was over. The nurses were shocked along the way that I wasn't losing it all through treatment.
Most rounds of chemo were tolerable. I had 6 of them scheduled and they lasted 21 days. I worked at school through this, and some of my coworkers were amazed and inspired. The students had a limited understanding of things, but loved to see the tubes coming out of my arm. I wasn't myself but I was getting by. After work though I would often come home and nap immediately. There were nights where I went to bed before 7 and didn't wake up until 7 the next morning.
I missed very few days early on, but my treatment was dose adjusted. That meant that each round I would be getting a stronger dose until I became neutropenic. Neutropenia is a condition where there is a lack of white blood cells. I didn't get sick through the first 4 cycles and had been doing fairly well. Unfortunately the 5th cycle fell over the Christmas holiday. The 25th was a Tuesday, which meant I had to spend a couple of hours in the hospital on Christmas. It wasn't all bad though. My family was at home and we had a great time. However, I finally became neutropenic the next week. My wife and I were planning a quiet New Year's Eve celebration together when I started getting a fever. It didn't come down after about 2 hours, and I was told to come in to the hospital. I spent the next 4 nights there and had an awful time. Sleep did not come easily if it came at all. I felt like an insomniac, and it was crappy having to eat only when the meal service was available. Luckily I did not get sick on the 6th cycle.
On January 31, 2008 I went in for my appointment after my 6th cycle. I had gotten back to a weight I felt comfortable at and was feeling good. I had a Pet Scan that showed no signs of disease, and I was declared to be in remission. The doctors seemed excited by my results, and my family and I celebrated my successful treatment. I lost my hair at that point, but my energy came back. At school I had more energy to deal with the kids. I started working my 2nd job waiting tables again, and had fun doing that. I no longer had to worry about picking up my son and being cautious with my health. I bought a new bike for the first time since I was a teenager and had fun times with that. In April I went in for my 3 month checkup and the doctors said the scar tissue where my tumor had been appeared to be shrinking even more. Things were great.
During the second week of June, 2008 I began itching my legs. I became angry but did not share it with anybody. I knew this wasn't a typical kind of itch. It was the same itch I had felt the previous year before my diagnosis. I remember telling myself, "It's Back." I knew it. However, I wasn't ready to share it. My family was going to Oregon for my cousin's wedding the next week, and I knew if I mentioned it or did anything about it, my family would have a terrible time on that trip. I forget how it came up, but my wife said something that made me mention it to her. She was obviously upset.
We went to Oregon and had a great time. During that trip we made plans to visit my sister for her 30th birthday around the 4th of July. I was itching more, but was in denial. Initially I started denying it so that I wouldn't cause my famil anxiety. I still felt great and there were no other pressing symptoms. I was aware of my denial at first. After returning from Florida I had started to believe that this wasn't a relapse. By staying silent I had put it in the back of my mind. My father had noticed my legs and had asked, and I told him what was going on. I know he wanted me to call the doctors immediately. My wife wanted me to call them as well. I supported my denial by reading about other survivors who continue to feel itching and get clean bills of health. It was about two weeks until my appointment, so I didn't make the call.
My six month checkup was July 24th. I had been nervous two nights before and slept little. The day of the appointment though I had no worries. My wife was with me and my father was flying back from overseas at the time. The nurse practicioner who sees me tried to find reasons, like travel, being outdoors, and staying in a hotel for my itching. I tried to let him know that I knew these weren't the reasons. He appeared nervous. While it is usually just a few minutes while the doctors consult and we are alone in the office, this time it took about 20 to 30 minutes. My wife knew at this time that it was bad news.
The research team came in and gave us the bad news. I didn't feel like it was bad news at this point. I was accepting what was going on. I asked a lot of questions...something I was accused of doing too little of the first time around. The situation and course of treatment were explained. My tumor had regrown to about 7 cms across. It was initially 10 by 10 when I was diagnosed a year ago. The plan right now is for two treatments of EPOCH-CR. This will be similar to my last treatment, except for the addition of Campath, a drug used to treat Leukemia patients. The team explained that they have only treated 6 people with this regimen before, so I will be one of the first guinea pigs to get this treatment. The Campath will knock out my CD4 cells, which will make me prone to infection. My father the AIDS researcher described that I'll pretty much be like an AIDS patient on this medicine.
After the tumor is decreased in size, I will have 5 to 6 weeks of radiation. That sucks! Avoiding radiation was the whole point of this trial to begin with. The research team explained that less than 10% of people with DLBC lymphoma have relapsed on this study. However, about half of Grey Zone patients, who are a small sample size, have had relapses. So far everybody who has relapsed on this regimen has gone into remission again with radiation. So it looks like my experience is helping to create a standard protocol for treating Grey Zone lymphoma. I'll be the first one in this study to get EPOCH-CR. I know I can't explain why I have this disease, but I feel like I have it because I'm strong enough to get through it. If my experience can help researchers help others down the line, then I am extremely happy.
This took a while to write down my experience so far. I have appointments scheduled next week, and if the results of the needle biopsy I had today are good, then I will start chemo within the week. Hopefully I will have the energy and desire to keep this blog up during my treatment.
Start of the Blog
Hello...I started this blog back on July 25th on Caringbridge.com. I've decided to repost everything I posted there because I like the format of blogger. One of my reasons for doing this is that I don't believe that Caringbridge blogs come up on search engines. Caringbridge has been good for linking to family and friends, but I would also like my journaling to be available to anybody searching for relative information on Yahoo, Google, etc. While Caringbridge has a guestbook for visitors to sign, it does not have the option of commenting on specific posts. With blogger, a visitor can reply to a particular post that I've written, and it would be more clear to me what they are commenting on when I view it. So here is my blog, in another format. I think I'll continue to post on both outlets at this time.
Originally posted on Caringbridge.com/visit/johnblattner on 7/25/2008.
I did such a great job surviving cancer the first time, that the powers that be asked me to come back and do it one more time!
My name is John and I have Cancer...again!
I'm writing my story after receiving news yesterday that my cancer has returned. I'm going through the diagnostic process again, and preparing for more chemo. I didn't blog about my first experience with cancer. I kept the news pretty tight, and only told the people I had to. Word spread around to others, but I usually wasn't the one to inform them. I didn't want to appear as if I was looking for pity or sympathy.
This time around I want to be more open about everything that I'm going through. Of course it will probably be therapeutic for me to share my experiences, but thats not my only reason. I also want to give people who are curious or who may not know what is going on a chance to see what my cancer experience is like.
Originally posted on Caringbridge.com/visit/johnblattner on 7/25/2008.
I did such a great job surviving cancer the first time, that the powers that be asked me to come back and do it one more time!
My name is John and I have Cancer...again!
I'm writing my story after receiving news yesterday that my cancer has returned. I'm going through the diagnostic process again, and preparing for more chemo. I didn't blog about my first experience with cancer. I kept the news pretty tight, and only told the people I had to. Word spread around to others, but I usually wasn't the one to inform them. I didn't want to appear as if I was looking for pity or sympathy.
This time around I want to be more open about everything that I'm going through. Of course it will probably be therapeutic for me to share my experiences, but thats not my only reason. I also want to give people who are curious or who may not know what is going on a chance to see what my cancer experience is like.
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