Yesterday was Day 49 since my Bone Marrow Transplant, and my first followup visit with Dr. Horwitz since escaping from the grasp of the transplant clinic and returning home. Making yet another trip to Duke was actually not all that bad - kind of like seeing an old friend after you have been apart for a while. But I also look forward to seeing less and less of my buddy over the coming weeks and months, hopefully only getting together for routine annual visits.
My day began with another PET/CT scan, the most reliable method currently available for detecting the presence, or absence, of fast growing cancer cells anywhere in the body. That was followed by a pulmonary test, made necessary by the fact that a Bone Marrow Transplant can be very taxing on the lungs and respiratory system.
This makes my fourth PET scan since being diagnosed in June of last year. The first was just prior to my diagnosis, and indicated wide spread cancer throughout my entire body. They said that my scan "lit up like a christmas tree". The second and third scans were performed in September and January to determine how I was responding to my clinical trial chemotherapy regimen. Both of those scan showed that the treatments were being highly effective and showed no evidence cancer cells anywhere except one persistent lymph node in my abdomen. For some reason that one node was not responding to the chemo, even though everything else was being highly responsive. It looked the same on scan three as it did on scan one. Quite puzzling.
So I was anxious to find out if the High Dose Chemo part of the transplant process had been able to have any impact on that node. My hope and prayer was that because there were different drugs involved, and in much higher concentrations, it had been so effective that it killed all of the cancer cells in that persistent node. But having already had 24 chemo treatments, I was not expecting significant change. Dr. Horwitz walked into the room, sat down, and said that he had looked at the scans and they showed that there are no cancer cells anywhere, and that I am in complete remission. That node has been scrubbed clean. Complete remission! It took both Holly and I a few minutes to fully comprehend what he had just said. Our family motto has been "We're going to beat this", and that is just what we have done.
Ever since that meeting, all we can think about and talk about is what a mighty God we serve. The God that brought all that is, into existence; the God that created the heavens and the earth; the God that lives and reigns on high; that same God hears the prayers of each and everyone of His children, and knows the desires of our hearts. That is the same God that answered my hope and prayer. Complete remission - thank you Lord for your love, and your kindness, and your mercy.
It was Dr. Horwitz recommendation that we meet with a radiologist at Duke to get his opinion as to whether or not we should consider radiation for the area of that node. The scan indicates that there are no cancer cells present, but just to be on the safe side, since that node has been somewhat problematic and atypical, perhaps we should consider "zapping" it, just to be sure. It sounds reasonable, and having come this far, why not take this one last step as a bit more insurance.
Overall, yesterday was just about as good as it gets. It was certainly better than expected. And I can't begin to tell you how good it was to hear that, in something less than 12 months since I was diagnosed with Stage 4 Non-Hodgkins Peripheral Lymphoma, with a 5 year survival rate of about 20%, I am now told that I am in complete remission. It has not completely sunk in yet, but I am one very happy camper. Thank you Jesus.
http://0729jimd.blogspot.com
Thursday, April 25, 2013
Saturday, April 13, 2013
My train ride.
A little over six weeks ago I was admitted to the hospital at Duke to begin my autologus bone marrow transplant. And what a six weeks it has been. At the time of my admission, I was feeling as good as I had felt in quite a while. It had been about two months since I complete my clinical trail, which involved 24 chemotherapy treatments over a six month period. The collective effect of that much chemo had worn me down, and while I had avoided most of the normal chemo side effects, I was generally fatigued most of the time. But during my two month hiatus, I had regained some strength and was feeling pretty good.
A while back I read a comment somewhere that seems very fitting: First they hit me with a bus, and then as I was starting to get back up, they hit me with a train. During that six days in the hospital I received 14 chemo infusions, or what they refer to as High Dose Chemo. The actual six days in the hospital were not really all that bad. It was the next two weeks, living in an apartment near Duke, that things really hit bottom, and all those chemo drugs began to have their full effects. It was as if that train was two weeks long.
As was the case during the clinical trial, I was again blessed by being able to avoid most of the side effects of the chemotherapy treatments: nausea and vomiting, diarrhea, pain, loss of appetite and weight, etc. My two main problems were extreme fatigue, and mucositis, or mouth sores. There was also probably a brief encounter with chemo brain, also known as chemo fog, but I'm not sure if that is correct or not :-). For a period of a few weeks, just getting up, and getting from the bed to the breakfast table was a major undertaking. Then I had to get dressed and make my daily trip to the BMT clinic for blood tests and reassessment. Holly would drop me off at the front entrance to the clinic, where I would check in at the front desk, and then sit down to rest. Getting from the car to the check in was all I could handle. After my rest, I would walk probably 50 yards to the treatment area, get weighed in and assigned a nurses' area, only to be exhausted again and ready to sit back down.
I believe that it is only now, when I am beginning to feel better and stronger, that I can look back and see how bad I really was. My main focus back then was just getting through each hour. After we moved into the apartment, I was told that it was important to get some exercise each day, whether I felt like it or not. So each day we would do one lap around the parking lot, probably about 200 yards. For the first week I had to stop and rest twice during that one lap. Gradually I worked up to no rest stops, and then to two laps. I am now walking about one mile each day.
It is difficult to describe, but as I look back now, I can see much more clearly that I was really at the bottom of the well. As Robin Roberts said recently, they were really terrible, hard, yucky days. And I am so very glad that they are now behind me. I have come so very far since then, and am getting better each day. I get blood workups done locally each week to see how my various counts and measures are progressing. And I am glad to report that they are all showing improvement each and every week. Most of my counts are back up into the "normal" ranges, and the rest are not far behind. However, there is one very important attribute that cannot be measured, and that is my immune system. It was totally destroyed by the High Dose Chemo and is now in the process of being rebuilt. But it cannot be measured on a 10 point scale, and it takes many months to return to full functionality. For that reason I must be careful to avoid situations that might expose me to germs, viruses, infections, etc.
In about another week and a half we will return to Duke for my first followup visit since the transplant. This will involve another PET/CT scan, along with some other tests, and a meeting with Dr. Horwitz to review and discuss my situation. I look forward to finding out what is next on the agenda. Between the clinical trial, and then the transplant, I have definitely come through the worst part, but I am by no means at the end of my journey. This train will stop at many more stations before it reaches it's destination, but at least now I am riding on the train, rather than being hit by it.
http://0729jimd.blogspot.com
A while back I read a comment somewhere that seems very fitting: First they hit me with a bus, and then as I was starting to get back up, they hit me with a train. During that six days in the hospital I received 14 chemo infusions, or what they refer to as High Dose Chemo. The actual six days in the hospital were not really all that bad. It was the next two weeks, living in an apartment near Duke, that things really hit bottom, and all those chemo drugs began to have their full effects. It was as if that train was two weeks long.
As was the case during the clinical trial, I was again blessed by being able to avoid most of the side effects of the chemotherapy treatments: nausea and vomiting, diarrhea, pain, loss of appetite and weight, etc. My two main problems were extreme fatigue, and mucositis, or mouth sores. There was also probably a brief encounter with chemo brain, also known as chemo fog, but I'm not sure if that is correct or not :-). For a period of a few weeks, just getting up, and getting from the bed to the breakfast table was a major undertaking. Then I had to get dressed and make my daily trip to the BMT clinic for blood tests and reassessment. Holly would drop me off at the front entrance to the clinic, where I would check in at the front desk, and then sit down to rest. Getting from the car to the check in was all I could handle. After my rest, I would walk probably 50 yards to the treatment area, get weighed in and assigned a nurses' area, only to be exhausted again and ready to sit back down.
I believe that it is only now, when I am beginning to feel better and stronger, that I can look back and see how bad I really was. My main focus back then was just getting through each hour. After we moved into the apartment, I was told that it was important to get some exercise each day, whether I felt like it or not. So each day we would do one lap around the parking lot, probably about 200 yards. For the first week I had to stop and rest twice during that one lap. Gradually I worked up to no rest stops, and then to two laps. I am now walking about one mile each day.
It is difficult to describe, but as I look back now, I can see much more clearly that I was really at the bottom of the well. As Robin Roberts said recently, they were really terrible, hard, yucky days. And I am so very glad that they are now behind me. I have come so very far since then, and am getting better each day. I get blood workups done locally each week to see how my various counts and measures are progressing. And I am glad to report that they are all showing improvement each and every week. Most of my counts are back up into the "normal" ranges, and the rest are not far behind. However, there is one very important attribute that cannot be measured, and that is my immune system. It was totally destroyed by the High Dose Chemo and is now in the process of being rebuilt. But it cannot be measured on a 10 point scale, and it takes many months to return to full functionality. For that reason I must be careful to avoid situations that might expose me to germs, viruses, infections, etc.
In about another week and a half we will return to Duke for my first followup visit since the transplant. This will involve another PET/CT scan, along with some other tests, and a meeting with Dr. Horwitz to review and discuss my situation. I look forward to finding out what is next on the agenda. Between the clinical trial, and then the transplant, I have definitely come through the worst part, but I am by no means at the end of my journey. This train will stop at many more stations before it reaches it's destination, but at least now I am riding on the train, rather than being hit by it.
http://0729jimd.blogspot.com
Thursday, April 4, 2013
Random thoughts
Cancer sucks !!!!!!!!!
Thank God for the many dedicated medical professionals, who have committed their lives to helping cancer patients fight back against the disease that seeks to destroy them.
Prayer works.
Cancer helps you get your priorities straightened out.
No two battles with cancer are quite the same. Each individual travels a unique path, and deals with their situation based on their own characteristics, gifts and attitude.
I have felt the touch of God Almighty.
Cancer sucks !!!!!!!!!
Chemotherapy is simultaneously both good and bad.
I sincerely believe that one day cancer will be viewed in much the same way that we currently view polio or malaria.
Have you told someone lately that you love them?
My wife is amazing!
Caregivers are over worked and under appreciated.
Cancer sucks !!!!!!!!!!
Pain is temporary. Quiting is forever. You simply cannot stop fighting.
Cancer research is so critically important. And I feel that I contributed in some small way by participating in a clinical trial.
There is no guarantee that any of us will see the light of tomorrow.
Robin Roberts, Good Morning America co-anchor, after her recent bone marrow transplant, said "..... really terrible, hard, yucky days I never want to relive or think about again." I say amen.
Attitude is critical.
Never in a million years would I wish cancer on anyone. But I am a stronger and better person because of it.
Cancer sucks !!!!!!!!
Thank God for the many dedicated medical professionals, who have committed their lives to helping cancer patients fight back against the disease that seeks to destroy them.
Prayer works.
Cancer helps you get your priorities straightened out.
No two battles with cancer are quite the same. Each individual travels a unique path, and deals with their situation based on their own characteristics, gifts and attitude.
I have felt the touch of God Almighty.
Cancer sucks !!!!!!!!!
Chemotherapy is simultaneously both good and bad.
I sincerely believe that one day cancer will be viewed in much the same way that we currently view polio or malaria.
Have you told someone lately that you love them?
My wife is amazing!
Caregivers are over worked and under appreciated.
Cancer sucks !!!!!!!!!!
Pain is temporary. Quiting is forever. You simply cannot stop fighting.
Cancer research is so critically important. And I feel that I contributed in some small way by participating in a clinical trial.
There is no guarantee that any of us will see the light of tomorrow.
Robin Roberts, Good Morning America co-anchor, after her recent bone marrow transplant, said "..... really terrible, hard, yucky days I never want to relive or think about again." I say amen.
Attitude is critical.
Never in a million years would I wish cancer on anyone. But I am a stronger and better person because of it.
Cancer sucks !!!!!!!!
Subscribe to:
Posts (Atom)