Duke Cancer Center
Durham, North Carolina
My home away from home. Where I take my cancer to have it eradicated.
Friday, August 24, 2012
The road ahead.
Back in early July we made a trip up to Duke and met with Dr. Horwitz and his medical team at the Adult Bone Marrow Transplant center. The assessment at that meeting determined that I would be a candidate for what is called an autologus stem cell transplant. A bone marrow transplant and a stem cell transplant are two different terms describing the same process. An autologus transplant uses the patients' own stem cells and an allogenic transplant involves using donor cells. One of the big advantages of an autologus transplant is that the body is much less likely to reject the transplant because the cells being transplanted are it's own. So hearing that I would be able to have an auto transplant was indeed welcome news. We were given a fairly detailed briefing on what a stem cell transplant entails. To say that it is complex and complicated is a gross understatement. Our daughter Jill, who is now a stay at home mom with three children, spent a year as an RN in the Pediatric Bone Marrow Transplant unit at Duke, and has been an invaluable resource to us in understanding what things mean and what is involved. She describes a transplant as "pushing the reset button on your immune system". If only it were that simple.
Most of my posts up until now have dealt with my chemotherapy treatments, with a few digressions into genealogy and visits to the beach with the family. I am bringing up the subject of stem cell transplant because in about 4 more weeks I will be finishing a key check point in my chemotherapy treatment protocol and will have a CT scan, a bone marrow biopsy and blood tests to enable my oncologist, Dr. Beaven, to "restage" of my cancer. Depending on the results of those tests, I will either be scheduled for 14 more weeks (2 cycles) of chemotherapy, or, if we have achieved the hoped for word "remission", I will then be transferred to the BMT center to begin the transplant process. Regardless of whether remission is achieved at the end of 2 cycles, or 4 or 6, I will then undergo a stem cell transplant. The only reason for not getting a transplant would be if the cancer is not responding and is in fact getting worse. But the latter is not even an option for our consideration. Being a stubborn fighter with an iron clad constitution and a strong faith in The Most High God, coupled with the support and prayers of a large group of friends and family, the end result is We're Going To Beat This.
The transplant process will start shortly after the remission determination. While the overall transplant process will be spread over 9 to 12 months, the first 2 months are the most intense and potentially problematic. Within the first couple of weeks I will be admitted to the hospital at Duke for the actual transplant and remain an inpatient for about a week to 10 days. I will then be dismissed but will have to make daily visits to the clinic for checkups and medications. During this time, 6/8 weeks, we will actually be living in an apartment near Duke, to facilitate our frequent visits. After that we will be able to return home but will be frequent visitors in Durham for several months.
The coming transition from chemotherapy to transplant is but one more phase on the emotional roller coaster ride of being a cancer patient, and the wife of a cancer patient, and the son or daughter, or a friend. While on the one hand we are dealing with this fight and all that it entails one day at a time, a certain amount of thought and planning must still be invested in what lies ahead. Chemotherapy was a scary thing before I started getting treatments, but now that I am traveling down that road it is not nearly so worrisome or daunting. Now a stem cell transplant is on the horizon, and with that thought comes fears and worries about the unknown path that lies ahead. But I know that many, many, many other people, just like me, have gone through transplants and are now living cancer free lives as a result. So if they can do it, so can I. And most importantly I know that my God will be with me every step of the way, so I have nothing to fear.
Some might ask why a transplant is required if the chemotherapy treatments have gotten the cancer into remission. A large part of the answer lies with the type of lymphoma that I have. Non-Hodgkin's Peripheral T-Cell Lymphoma NOS (Not Otherwise Specified) is a very aggressive form of the disease that is difficult to get into remission and, once in remission, it has an unacceptably high rate of recurrence. The clinical trial that I am participating in is a research study targeted at improving the rate of achieving remission. Remission really means "no signs" of the cancer, but is not a guarantee that there are not a few stray cancer cells still hiding out somewhere, waiting to cause trouble later. The transplant process involves giving high dose chemotherapy early on, which is far more destructive than regular chemo, and greatly improves the chances that any remaining cancer cells are destroyed. It still is not a guarantee but it does improve the odds of not having a recurrence. Since my form of lymphoma is so rare, only 340 cases last year worldwide, the experience with this specific type is very limited and the treatment protocol is not as refined as it someday will be. So we are simply trying to hedge our bets and go with the combination of treatments that will provide us the best odds in the longer term. My body is still strong, and that coupled with my faith and my team of prayer warriors, will see me through this ordeal.
This post is longer than most, but there is a lot to consider as we look at what is before us in the coming months. It is my hope that, in addition to keeping you up-to-date on my status, this may be helpful to others who may be on the same journey that I am on. This blog website gives me the ability to see where the viewers are from, and I see regular visits internationally, particularly from Russia. If I can somehow be a resource to help someone better cope with their own situation, I will consider that a blessing. That is why I have added a section with links to other blogs and informational websites. And if my faith and my belief in the power of God Almighty can help others learn to lean on Him, I will feel even more blessed.
Most of my posts up until now have dealt with my chemotherapy treatments, with a few digressions into genealogy and visits to the beach with the family. I am bringing up the subject of stem cell transplant because in about 4 more weeks I will be finishing a key check point in my chemotherapy treatment protocol and will have a CT scan, a bone marrow biopsy and blood tests to enable my oncologist, Dr. Beaven, to "restage" of my cancer. Depending on the results of those tests, I will either be scheduled for 14 more weeks (2 cycles) of chemotherapy, or, if we have achieved the hoped for word "remission", I will then be transferred to the BMT center to begin the transplant process. Regardless of whether remission is achieved at the end of 2 cycles, or 4 or 6, I will then undergo a stem cell transplant. The only reason for not getting a transplant would be if the cancer is not responding and is in fact getting worse. But the latter is not even an option for our consideration. Being a stubborn fighter with an iron clad constitution and a strong faith in The Most High God, coupled with the support and prayers of a large group of friends and family, the end result is We're Going To Beat This.
The transplant process will start shortly after the remission determination. While the overall transplant process will be spread over 9 to 12 months, the first 2 months are the most intense and potentially problematic. Within the first couple of weeks I will be admitted to the hospital at Duke for the actual transplant and remain an inpatient for about a week to 10 days. I will then be dismissed but will have to make daily visits to the clinic for checkups and medications. During this time, 6/8 weeks, we will actually be living in an apartment near Duke, to facilitate our frequent visits. After that we will be able to return home but will be frequent visitors in Durham for several months.
The coming transition from chemotherapy to transplant is but one more phase on the emotional roller coaster ride of being a cancer patient, and the wife of a cancer patient, and the son or daughter, or a friend. While on the one hand we are dealing with this fight and all that it entails one day at a time, a certain amount of thought and planning must still be invested in what lies ahead. Chemotherapy was a scary thing before I started getting treatments, but now that I am traveling down that road it is not nearly so worrisome or daunting. Now a stem cell transplant is on the horizon, and with that thought comes fears and worries about the unknown path that lies ahead. But I know that many, many, many other people, just like me, have gone through transplants and are now living cancer free lives as a result. So if they can do it, so can I. And most importantly I know that my God will be with me every step of the way, so I have nothing to fear.
Some might ask why a transplant is required if the chemotherapy treatments have gotten the cancer into remission. A large part of the answer lies with the type of lymphoma that I have. Non-Hodgkin's Peripheral T-Cell Lymphoma NOS (Not Otherwise Specified) is a very aggressive form of the disease that is difficult to get into remission and, once in remission, it has an unacceptably high rate of recurrence. The clinical trial that I am participating in is a research study targeted at improving the rate of achieving remission. Remission really means "no signs" of the cancer, but is not a guarantee that there are not a few stray cancer cells still hiding out somewhere, waiting to cause trouble later. The transplant process involves giving high dose chemotherapy early on, which is far more destructive than regular chemo, and greatly improves the chances that any remaining cancer cells are destroyed. It still is not a guarantee but it does improve the odds of not having a recurrence. Since my form of lymphoma is so rare, only 340 cases last year worldwide, the experience with this specific type is very limited and the treatment protocol is not as refined as it someday will be. So we are simply trying to hedge our bets and go with the combination of treatments that will provide us the best odds in the longer term. My body is still strong, and that coupled with my faith and my team of prayer warriors, will see me through this ordeal.
This post is longer than most, but there is a lot to consider as we look at what is before us in the coming months. It is my hope that, in addition to keeping you up-to-date on my status, this may be helpful to others who may be on the same journey that I am on. This blog website gives me the ability to see where the viewers are from, and I see regular visits internationally, particularly from Russia. If I can somehow be a resource to help someone better cope with their own situation, I will consider that a blessing. That is why I have added a section with links to other blogs and informational websites. And if my faith and my belief in the power of God Almighty can help others learn to lean on Him, I will feel even more blessed.
Thursday, August 23, 2012
Links to other blogs.
My chemo treatment last Tuesday went well. I don't feel any different after that treatment than I did before, and that is always a good sign. And even though I don't feel any different, I still believe that all those cancer cells are definitely feeling a lot different as they continue their life and death battle with that new dose of Pralatrexate. Go Pralatrexate!!
As I have mentioned before, I do a lot of reading these days and one of my favorites things to read are other blogs by people, just like me, who are either going through treatment therapies or have completed their treatment regimen and are getting on with their cancer-free lives. Their thoughts, their feelings, their concerns and their joys are things that I can relate to so closely. Just this morning I was reading a recent posting and thought how I would like to share that with others. Realistically I can't really copy all of those posts over here to my blog, so I got real adventuresome and figured out how to add links to other websites onto my blog. So if you look on the right side of my blog, just under my profile, you will see a section titled "Links to other blogs". One of my favorites is The Voice: A Christian cancer blog. Hopefully, these links will prove interesting to others, especially someone who is currently battling cancer and has somehow found my blog.
As I have mentioned before, I do a lot of reading these days and one of my favorites things to read are other blogs by people, just like me, who are either going through treatment therapies or have completed their treatment regimen and are getting on with their cancer-free lives. Their thoughts, their feelings, their concerns and their joys are things that I can relate to so closely. Just this morning I was reading a recent posting and thought how I would like to share that with others. Realistically I can't really copy all of those posts over here to my blog, so I got real adventuresome and figured out how to add links to other websites onto my blog. So if you look on the right side of my blog, just under my profile, you will see a section titled "Links to other blogs". One of my favorites is The Voice: A Christian cancer blog. Hopefully, these links will prove interesting to others, especially someone who is currently battling cancer and has somehow found my blog.
Monday, August 20, 2012
It is well.
Tomorrow is another treatment day at Duke so we will hitch the team and head up the road to see our world class medical team. Fortunately, the second part of my treatment cycle is not as intense as the first, as far as the impact on my body is concerned. Hopefully, the second part is even more intense than the first, as far as it's impact on my cancer is concerned. Tomorrow is the first of three consecutive Tuesdays of doctor visits and Pralatrexate infusions, with no other treatments mixed in between, and then I get a break for 2 weeks. That will complete my 2nd cycle of treatments and I will have several tests that will allow the doctors to assess my progress and determine the next steps. I have a lot of confidence that the test results will show that the disease is losing the fight and a couple more cycles of treatment is all we will need to get it in comploete remission. For all you prayer warriors out there, that is my prayer request and I'll take all the help I can get. We're going to beat this!
This afternoon the words to an old familiar hymn came to my mind and seem especially fitting. In the midst of this battle, which can leave many in the pits of worry and dispair, I have a blessed peace in my spirit. The first verse says it all:
This afternoon the words to an old familiar hymn came to my mind and seem especially fitting. In the midst of this battle, which can leave many in the pits of worry and dispair, I have a blessed peace in my spirit. The first verse says it all:
When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.
Refrain:
It is well, with my soul,
It is well, it is well, with my soul.
Friday, August 17, 2012
Looking back.
I have mentioned before that a few years ago I started researching the family trees for both Holly and me and I now have a bad case of addiction to genealogy. I enjoy spending hour upon hour on the Internet trying to turn up new details on our ancestors and even once in a while a whole new ancestor or two. It has been a good way for me to keep my mind occupied over these past few months when I didn't feel like doing much that involved physical exertion. Something that I try to determine is the cause of death for each individual. One was killed in the Civil War, one drowned and one was even kicked by a horse. But most of them died of more common and recognizable causes, including several who died from cancer. Back in the early 1800's, cancer was a known disease but there was not any real treatment available. All through the 19th century and most of the 20th, the patient likely suffered a slow and agonizing death. It wasn't until the latter part of the 1900's that the medical community began to develop cancer treatment techniques that could sometimes reverse and even cure the cancer. Unfortunately, in most cases the treatment was harder on the patient than the disease itself. I can remember, probably 50 years ago, going to visit an uncle who was dying at home from lung cancer. I remember, after the visit, asking my mother if it would be OK if I didn't go to visit my uncle again, because he was experiencing such terrible suffering that I couldn't bear to watch him that way.
Things have come a long way since then. Modern cancer treatments can sometimes still be debilitating and horrible, but many new drugs are far more effective at reducing or eliminating the awful side effects of chemotherapy. The medical research community is moving ever closer to finding cures for cancer and maybe even developing vaccines that will make it disappear, like polio or tuberculosis. What a glorious day that will be when our descendants can talk about cancer in the past tense. In the meantime, we work with what we have. We thank God that there are facilities like Duke Cancer Center, and that there are clinical research trials like the one that I am in, that are helping to find new ways to treat and eventually eradicate this ugly monster. Whether the disease is cancer or diabetes or kidney disease or meningitis, we are so fortunate to live in this time and place, and have access to the medical knowledge and facilities that are available to us. And even better, next Tuesday when I head to Duke for another treatment I won't have to harness the team and hook up the wagon. Praise the Lord!
Things have come a long way since then. Modern cancer treatments can sometimes still be debilitating and horrible, but many new drugs are far more effective at reducing or eliminating the awful side effects of chemotherapy. The medical research community is moving ever closer to finding cures for cancer and maybe even developing vaccines that will make it disappear, like polio or tuberculosis. What a glorious day that will be when our descendants can talk about cancer in the past tense. In the meantime, we work with what we have. We thank God that there are facilities like Duke Cancer Center, and that there are clinical research trials like the one that I am in, that are helping to find new ways to treat and eventually eradicate this ugly monster. Whether the disease is cancer or diabetes or kidney disease or meningitis, we are so fortunate to live in this time and place, and have access to the medical knowledge and facilities that are available to us. And even better, next Tuesday when I head to Duke for another treatment I won't have to harness the team and hook up the wagon. Praise the Lord!
Wednesday, August 15, 2012
Better days.
I posted last Saturday that I was seemingly feeling the effects of my 3 chemo treatments last week. Well I am glad to report that I am doing much better, not that I was feeling all that poorly before. My energy level has returned and I don't feel like I need to take a nap all the time. I still haven't begun training to run a marathon yet but getting around isn't such a chore. I have decided that 3 heavy days of chemo just knock all the wind out of my sails and it takes several days before the drugs have run their course and my body can begin to rebuild. Fortunately I only have to endure that once every 7 weeks. The rest of the time I only have one less powerful drug infusion per week, with even a couple of weeks off mixed in. So the next 5 weeks should be more pleasant and we will deal with the future when it gets here. As I have said before, we are taking it one day at a time. And today is going well :-)
Monday, August 13, 2012
My morning walk.
That subject line "My morning walk" seems to come up a lot here but my morning walks are a special time for me. I addition to getting some exercise and fresh air, they give me a chance to just get quiet and reflect on things. This morning I was walking a bit slower since my chemo seems to have sapped some of my energy but I was noticing that I am feeling a bit better. Hopefully I am rebounding from my treatments last week and things will be improving each day.
This morning my thoughts alternated between how much the Lord has blessed me, and how I am so much more fortunate than so many other people. In His goodness and mercy the Lord has surrounded me with a wonderful family that loves and supports me, a safe and comfortable life that more than meets all my needs, a peace in times of trouble, a knowledge that He loves me and a belief that no matter what lies ahead He will be there with me. What more could I want?? And then I would think about some of the people I see each week in the chemo treatment center and how they are suffering, both physically and mentally. And there are those without enough to eat or without a place to live, or those in broken homes or relationships, or mired in deep dispair or depression, or in parts of the world where war rages daily. There are so many other places that I could be, that are so much worse than where I am, and I am so blessed and so fortunate to be out there walking around my neighborhood with my Lord. Oh how I enjoy those morning walks.
This morning my thoughts alternated between how much the Lord has blessed me, and how I am so much more fortunate than so many other people. In His goodness and mercy the Lord has surrounded me with a wonderful family that loves and supports me, a safe and comfortable life that more than meets all my needs, a peace in times of trouble, a knowledge that He loves me and a belief that no matter what lies ahead He will be there with me. What more could I want?? And then I would think about some of the people I see each week in the chemo treatment center and how they are suffering, both physically and mentally. And there are those without enough to eat or without a place to live, or those in broken homes or relationships, or mired in deep dispair or depression, or in parts of the world where war rages daily. There are so many other places that I could be, that are so much worse than where I am, and I am so blessed and so fortunate to be out there walking around my neighborhood with my Lord. Oh how I enjoy those morning walks.
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