In my last post I was discussing aspects of the somewhat unexpected and/or potential difficulties that a cancer survivor may encounter when adjusting to life after cancer. I indicated that my fatigue and my depression seem to be the only two latent symptoms that I sensed at that point. Not wanting to leave everyone wondering about my current status, I am happy to report good progress on both fronts.
My doctors had indicated that it could take quite a while before my fatigue problem was resolved and that I needed to be faithful in getting regular daily exercise. For the most part I have been successful in incorporating exercise into my daily routine, although I acknowledge that it could always be increased in intensity. But overall I am definitely feeling much better than at any time since my treatments ended. Slowly but surely I seem to be gaining strength and my endurance is improving. I still have a long way to go, and at times wonder how much of it is from my physical ordeal and how much is the fact that I will turn 70 next year. But I am making progress and it feels good to feel good for a change.
On the depression front, shortly after my last post I had a regular visit to my family doctor and he prescribed a small dosage of an antidepressant, which has really proven to be beneficial. My overall attitude and outlook have improved noticeably and I think that little daily pill 'is just what the doctor ordered'. As the holidays approach it is good to know that I will be experiencing them more in the spirit of Bob Cratchit, rather than Ebenezer Scrooge. And my family will no doubt appreciate it also.
Tuesday, November 26, 2013
Saturday, October 12, 2013
Life after cancer.
It has been about 16 months since my initial cancer diagnosis, which started me and my family on a journey that none of us expected or wanted. It has been about 5 months since I was told that the collective effect of the chemotherapy and the bone marrow transplant had eliminated any signs of cancer from my body, and I was now in complete remission. It has been about 4 months since I finished my last radiation treatment, ending 12 long months of aggressive and unpleasant therapies, all designed to remove the cancer from my system and allow me to continue with my life. My physical battle is complete and I am now able to get on with my "normal" life.
But what I am just now beginning to sense, what I am beginning to find, is that life after cancer is anything but "normal". I can understand and appreciate many of the physical processes and changes that have taken place. I can still feel some of the residual effects of my treatments when I am called upon to physically exert myself. My endurance and stamina are still a long way from "normal"and I am told that the more I exercise and push myself, the quicker will be my recovery. But what is just now beginning to come into focus is the impact that this ordeal has had on my emotional and psychological well being.
Up to this point the primary goal of the medical community, as relates to cancer, has been to find new and better ways to treat cancer, and hopefully eventually find a cure. It has only been recently that they have begun to appreciate and address the need for developing a program to benefit cancer survivors. It is being recognized that after the physical treatment ends, there is a distinct phase of the cancer experience, and those who study cancer survivors have suggested a strategy for the ongoing clinical care of cancer survivors. At the heart of this strategy is a survivorship care plan (SCP), a document that includes details not only about the patient's diagnosis and treatment but also essential information needed for long-term health care. Designed for discussion at the end of treatment, the SCP should include summaries of the key diagnostic and staging results, treatments and dosages received, as well as the potential later effects of those treatments. It should prompt discussion about recurrent and new cancers; genetic implications; possible long-term and late effects; explanation of legal rights affecting employment and insurance; recommendations for nutrition, exercise, lifestyle changes and rehabilitation; and referrals for psychological and support assessments. But because the recognition of this need is so new, most cancer treatment centers do not yet have SCP's in active use.
Unfortunately this whole new field is just now being studied and guidelines developed. That is not much help for someone like me, already designated as a survivor, and beginning to discover areas of need as they develop. Rather reactive in nature, and unfortunately not especially proactive. In my own personal case, I am beginning to sense a feeling of deepening depression setting in. Holly has also detected this (as you would naturally expect she would) and suggests that it could well be a result of the 12+ months of intense emotional stress and strain, the ongoing conscious efforts to stay positive and upbeat (a drain in itself), dealing with the more recent fatigue and who knows what other unseen burdens. I have an appointment shortly with my regular family doctor and will discuss it with him, and will probably ask for a prescription for an antidepressant as an assist.
My fatigue and my depression seem to be the only two latent symptoms that I sense at this point. But in my reading I find a wealth of information about this area of cancer survivorship and many of the other symptoms or side effects, covering such areas as worry, feeling stress, depression and anxiety, anger, feeling alone, religion and spirituality, etc. I am listing a few links here to give anyone interested a place to start.
After Treatment: Developing a Survivorship Care Plan
Survivor Defined
Facing Forward: Life After Cancer Treatment
Cancer survivors: Managing your emotions after cancer treatment
Your Emotions after Treatment
I am adding this post to my blog to acknowledge that life after cancer can, and very probably will, involve previously unseen and unexpected aspects that everyone should be aware of. Being a cancer survivor is wonderful beyond description. But being an informed and aware cancer survivor is even better. God bless.
But what I am just now beginning to sense, what I am beginning to find, is that life after cancer is anything but "normal". I can understand and appreciate many of the physical processes and changes that have taken place. I can still feel some of the residual effects of my treatments when I am called upon to physically exert myself. My endurance and stamina are still a long way from "normal"and I am told that the more I exercise and push myself, the quicker will be my recovery. But what is just now beginning to come into focus is the impact that this ordeal has had on my emotional and psychological well being.
Up to this point the primary goal of the medical community, as relates to cancer, has been to find new and better ways to treat cancer, and hopefully eventually find a cure. It has only been recently that they have begun to appreciate and address the need for developing a program to benefit cancer survivors. It is being recognized that after the physical treatment ends, there is a distinct phase of the cancer experience, and those who study cancer survivors have suggested a strategy for the ongoing clinical care of cancer survivors. At the heart of this strategy is a survivorship care plan (SCP), a document that includes details not only about the patient's diagnosis and treatment but also essential information needed for long-term health care. Designed for discussion at the end of treatment, the SCP should include summaries of the key diagnostic and staging results, treatments and dosages received, as well as the potential later effects of those treatments. It should prompt discussion about recurrent and new cancers; genetic implications; possible long-term and late effects; explanation of legal rights affecting employment and insurance; recommendations for nutrition, exercise, lifestyle changes and rehabilitation; and referrals for psychological and support assessments. But because the recognition of this need is so new, most cancer treatment centers do not yet have SCP's in active use.
Unfortunately this whole new field is just now being studied and guidelines developed. That is not much help for someone like me, already designated as a survivor, and beginning to discover areas of need as they develop. Rather reactive in nature, and unfortunately not especially proactive. In my own personal case, I am beginning to sense a feeling of deepening depression setting in. Holly has also detected this (as you would naturally expect she would) and suggests that it could well be a result of the 12+ months of intense emotional stress and strain, the ongoing conscious efforts to stay positive and upbeat (a drain in itself), dealing with the more recent fatigue and who knows what other unseen burdens. I have an appointment shortly with my regular family doctor and will discuss it with him, and will probably ask for a prescription for an antidepressant as an assist.
My fatigue and my depression seem to be the only two latent symptoms that I sense at this point. But in my reading I find a wealth of information about this area of cancer survivorship and many of the other symptoms or side effects, covering such areas as worry, feeling stress, depression and anxiety, anger, feeling alone, religion and spirituality, etc. I am listing a few links here to give anyone interested a place to start.
After Treatment: Developing a Survivorship Care Plan
Survivor Defined
Facing Forward: Life After Cancer Treatment
Cancer survivors: Managing your emotions after cancer treatment
Your Emotions after Treatment
I am adding this post to my blog to acknowledge that life after cancer can, and very probably will, involve previously unseen and unexpected aspects that everyone should be aware of. Being a cancer survivor is wonderful beyond description. But being an informed and aware cancer survivor is even better. God bless.
Friday, September 13, 2013
A healthy and thankful me.
Just over 16 months ago, on June 6, 2012, I was told that I had a rare and aggressive form of Lymphoma, that is very difficult to get into remission, and has a 5 year survival rate of 20%. That news was about as close to a death sentence as I ever care to receive. Yesterday was my followup visit with Dr. Horwitz at Duke. After a CT scan and some blood work, I was told that my scan was fabulous, showing no signs whatsoever of residual cancer, my blood work was about as perfect as it gets, and I am not scheduled for another followup visit for 6 months. Hallelujah !!!!!!!!!!!!!!!
As we were driving home, I said to Holly that I was have some difficulty processing all that I had heard during our visit. Certainly I understood that I am now in complete remission, and the cancer has been totally eliminated from my body. And I understood that I no longer have any restrictions on my activities because my immune system, by this point, is totally reestablished and is capable of fighting off most any germs/viruses/infections/etc. that it routinely encounters. In other words, I am able to resume my life as I knew it before Non Hodgkins Peripheral T-Cell Lymphoma entered, temporarily, into my life and my body.
The reason I am still having some difficulty completely absorbing this most recent positive report is that up until now there has always been a BUT, or a PENDING, somewhere in the conversation. "Everything looks really good but we need to finish up the radiation treatments." "You are in complete remission but we want to get a look at another scan in 3 months just to be sure." "......but...." This time, however, there was no BUT. We don't need to wait and see what some additional test tells us. I don't need anymore treatments of any type. There is nothing pending except for me, and my amazing family, to get on with our lives. Why is that so hard to grasp ? It really isn't that tough, and I look forward to letting it totally sink in.
There is something that I keep thinking about from time to time, and it concerns the people who are right now in the process of going through some form of cancer treatment. My battle is over and it is time for me to move on. But someone else out there just got their cancer diagnosis yesterday, or is nervously awaiting the outcome of that biopsy, which will not be good news. As I sat in the waiting area yesterday at the Duke Bone Marrow Transplant clinic, I saw patients come and go, and could tell that they were in the process of going through their own bone marrow transplant, and feeling absolutely terrible. I looked at the door that I had gone through so many times, and thought about the men and women sitting back there hooked up to IV pumps, getting the medications that will keep them alive and hasten their recovery.
I know that I will never forget about those who are going through their own personal ordeal. And I will always be mindful of the fact that none of us is promised a tomorrow. I will always remember to say a prayer for them and their families. Thanks to all of those who remembered to pray for me and my family. I will be eternally grateful.
As we were driving home, I said to Holly that I was have some difficulty processing all that I had heard during our visit. Certainly I understood that I am now in complete remission, and the cancer has been totally eliminated from my body. And I understood that I no longer have any restrictions on my activities because my immune system, by this point, is totally reestablished and is capable of fighting off most any germs/viruses/infections/etc. that it routinely encounters. In other words, I am able to resume my life as I knew it before Non Hodgkins Peripheral T-Cell Lymphoma entered, temporarily, into my life and my body.
The reason I am still having some difficulty completely absorbing this most recent positive report is that up until now there has always been a BUT, or a PENDING, somewhere in the conversation. "Everything looks really good but we need to finish up the radiation treatments." "You are in complete remission but we want to get a look at another scan in 3 months just to be sure." "......but...." This time, however, there was no BUT. We don't need to wait and see what some additional test tells us. I don't need anymore treatments of any type. There is nothing pending except for me, and my amazing family, to get on with our lives. Why is that so hard to grasp ? It really isn't that tough, and I look forward to letting it totally sink in.
There is something that I keep thinking about from time to time, and it concerns the people who are right now in the process of going through some form of cancer treatment. My battle is over and it is time for me to move on. But someone else out there just got their cancer diagnosis yesterday, or is nervously awaiting the outcome of that biopsy, which will not be good news. As I sat in the waiting area yesterday at the Duke Bone Marrow Transplant clinic, I saw patients come and go, and could tell that they were in the process of going through their own bone marrow transplant, and feeling absolutely terrible. I looked at the door that I had gone through so many times, and thought about the men and women sitting back there hooked up to IV pumps, getting the medications that will keep them alive and hasten their recovery.
I know that I will never forget about those who are going through their own personal ordeal. And I will always be mindful of the fact that none of us is promised a tomorrow. I will always remember to say a prayer for them and their families. Thanks to all of those who remembered to pray for me and my family. I will be eternally grateful.
Sunday, September 8, 2013
Duke followup
Next Thursday I have an appointment with Dr. Horwitz at Duke for my 3 month followup exam. He has me scheduled for a CT scan rather than a PET scan. Interesting that he said he prefers doing CT scans for routine followup visits because the PET scans are too sensitive. They tend to pick up so much that they sometimes give false positives, which then prompt further testing and mental anxiety. So he feels like the CT is sufficient.
It has been a couple of months since I posted here on my blog. What a great feeling it has been. Not being consumed by thoughts about treatments, doctors visits, immune system problems, medications, and the whole raft of things that occupy a cancer patients mind. Holly and I have enjoyed making the transition back to our "normal" lives. We have even gone so far as to put a For Sale By Owner sign out in front of the house. It has been our intent for quite some time to relocate closer to our son and daughter, but our plans got put on hold when the Lymphoma showed up. But with that behind us, we can begin to pick back up where we left off.
I will report back after we return from Duke, but I did want to post something here in advance of our visit.
It has been a couple of months since I posted here on my blog. What a great feeling it has been. Not being consumed by thoughts about treatments, doctors visits, immune system problems, medications, and the whole raft of things that occupy a cancer patients mind. Holly and I have enjoyed making the transition back to our "normal" lives. We have even gone so far as to put a For Sale By Owner sign out in front of the house. It has been our intent for quite some time to relocate closer to our son and daughter, but our plans got put on hold when the Lymphoma showed up. But with that behind us, we can begin to pick back up where we left off.
I will report back after we return from Duke, but I did want to post something here in advance of our visit.
Sunday, July 7, 2013
My ebook
I have heard from many people that my blog has been very informative and inspirational. In fact, several have said that I have a gift for writing, and that I should write a book. So over the last few weeks I have done some reading about how to write an ebook, and the result is that I have just published my first Kindle ebook on Amazon.com. I took the posts from my blog and turned them into an electronic publication that can be accessed by anyone who has a Kindle ereader, or any other device (ipad, iphone, etc) that has a Kindle app.
My book is titled My Cancer, My Faith and can be accessed here or from the link on the right side of this page.
By their nature, blogs can be difficult to read if you want to start at the beginning and read through numerous posts clear to the end. In ebook form, this is much easier and is just like reading a hardback book. Just the other day, someone mentioned that they had recently found out that two friends had been diagnosed with stage 4 cancer. While those friends could be given the link to my blog, which is free, to read about my experience, this ebook is yet another option ( $4.99).
So to those that said I should become an author and write a book, thanks for the idea.
My book is titled My Cancer, My Faith and can be accessed here or from the link on the right side of this page.
By their nature, blogs can be difficult to read if you want to start at the beginning and read through numerous posts clear to the end. In ebook form, this is much easier and is just like reading a hardback book. Just the other day, someone mentioned that they had recently found out that two friends had been diagnosed with stage 4 cancer. While those friends could be given the link to my blog, which is free, to read about my experience, this ebook is yet another option ( $4.99).
So to those that said I should become an author and write a book, thanks for the idea.
Tuesday, June 25, 2013
Moving on
I recall that, in reading the blogs of other cancer patients/survivors, it is quite common that the frequency of posts begins to go down after their treatment ends. I guess this is a phenomena that should be expected, as the focus begins to shift from daily attention to the details of doctor visits and treatment routines, to a less consuming emphasis on getting back into a life cycle that does not center on cancer. I now find that it is possible to go an entire day, or even two, without even thinking about cancer, or at least not more than a passing thought. Six months ago that would have been inconceivable. As a result my mind does not tend to settle on subjects like 'blog posts'. But today I wanted to take some time and update my current status.
It has been 2 1/2 weeks since my last radiation treatment, and it is such a joy to know that there are no more treatments, of any type, in my future. It is such a sublime and wonderful feeling. However, I do still have a problem with fatigue, as a side effect of the radiation. My sense is that the fatigue continued to worsen for about a week and a half after my last treatment, before it stabilized, and now I have started to s-l-o-w-l-y regain some of my strength and stamina. It is so frustrating because I have been in various states of fatigue for most of the last year, and I am just plain tired of being tired !!! But hopefully sometime in the not too distant future, I will begin to feel more "normal".
As I mentioned earlier, it is quite refreshing to be able to think about things without having cancer exert it's unwelcome influence. It was about two years ago, after Holly and I had both retired, that we decided to put our house up for sale, and move to Asheville, NC to be closer to our son and daughter, and their families. Our daughter lives in Asheville, and our son lives in Greenville, SC, about one hour away, and both of these locations is a 4 hour drive from here in Whispering Pines. Eliminating that 4 hour drive seemed appropriate and desirable. Then along came Non Hodgkins Lymphoma, and my intimately close relationship with Duke Cancer Center, which is a 1 1/2 hour drive from here. Had we already moved to Asheville, it would have been a 4 hour drive. So we decided to take the house off the market until my cancer battle was resolved. Fast forward many months, and we now find that it is realistic to once again consider relocating to either Asheville or Greenville. It remains to be seen how this will unfold, with the uncertain real estate market, but we trust that God will guide us along the way.
One aspect of dealing with cancer, is finding something to focus your attention on, other that the cancer itself. The cancer will get more than it's fair share of your attention, but it simply cannot be allowed to consume 100% of your waking moments. The patient, and the caregiver and family as well, must find something else to occupy their thoughts and actions, lest they fall into a state of complete depression and despair. Strangely, one of the things that I have stumbled upon, that has engaged my hands and mind for untold hours, is making jewelry. That's right - this 6'6", 250 # macho guy, who has always been active in sports and other more manly pursuits, is now crafting beads and chains into bracelets and necklaces. Will wonders never cease. And I somewhat shamelessly provide a link to my ETSY website, in case you would like to see what I am now doing with all my spare time.
I know that there are a wide range of people that read and follow this blog. Some of those people are themselves cancer patients, who are just beginning their journey and their battle, or who are well into their treatment regimen. It has been my hope and prayer, all along, as I have maintained this blog, that I might be a source of hope and inspiration to some of those brothers or sisters. My battle and my journey have been unique to me. My emotional and physical make up are different than anyone else. My treatment routine and my reaction thereto, has been uniquely my own. How someone else reacts, or what their outcome may be, will be unique to their situation. But some aspects of my experience can be shared, and perhaps be of benefit or encouragement. My faith, my attitude and outlook, my support network, my determination and perseverance, any and all of these can be adopted or utilized by others in varying degrees, to help them along their path. Some stories about cancer, and it's treatment, are filled with sickness, pain, anguish and depression, hardship and strife. I have seen and met these people during my time at Duke Cancer Center. But those are not part of my story. My path has included both highs and lows. But my lows have not been as low as those of many others. And my highs have been higher and more frequent than the levels of other brothers and sisters. I can not tell others how to fight their fight, or how to rise above their situation. Only they can determine that. But I can offer hope. I can say that my experience indicates that it does not have to be total suffering and absolute hell on earth. If only one person can draw hope and strength from reading about my experience, then I will have been blessed beyond measure.
It has been 2 1/2 weeks since my last radiation treatment, and it is such a joy to know that there are no more treatments, of any type, in my future. It is such a sublime and wonderful feeling. However, I do still have a problem with fatigue, as a side effect of the radiation. My sense is that the fatigue continued to worsen for about a week and a half after my last treatment, before it stabilized, and now I have started to s-l-o-w-l-y regain some of my strength and stamina. It is so frustrating because I have been in various states of fatigue for most of the last year, and I am just plain tired of being tired !!! But hopefully sometime in the not too distant future, I will begin to feel more "normal".
As I mentioned earlier, it is quite refreshing to be able to think about things without having cancer exert it's unwelcome influence. It was about two years ago, after Holly and I had both retired, that we decided to put our house up for sale, and move to Asheville, NC to be closer to our son and daughter, and their families. Our daughter lives in Asheville, and our son lives in Greenville, SC, about one hour away, and both of these locations is a 4 hour drive from here in Whispering Pines. Eliminating that 4 hour drive seemed appropriate and desirable. Then along came Non Hodgkins Lymphoma, and my intimately close relationship with Duke Cancer Center, which is a 1 1/2 hour drive from here. Had we already moved to Asheville, it would have been a 4 hour drive. So we decided to take the house off the market until my cancer battle was resolved. Fast forward many months, and we now find that it is realistic to once again consider relocating to either Asheville or Greenville. It remains to be seen how this will unfold, with the uncertain real estate market, but we trust that God will guide us along the way.
One aspect of dealing with cancer, is finding something to focus your attention on, other that the cancer itself. The cancer will get more than it's fair share of your attention, but it simply cannot be allowed to consume 100% of your waking moments. The patient, and the caregiver and family as well, must find something else to occupy their thoughts and actions, lest they fall into a state of complete depression and despair. Strangely, one of the things that I have stumbled upon, that has engaged my hands and mind for untold hours, is making jewelry. That's right - this 6'6", 250 # macho guy, who has always been active in sports and other more manly pursuits, is now crafting beads and chains into bracelets and necklaces. Will wonders never cease. And I somewhat shamelessly provide a link to my ETSY website, in case you would like to see what I am now doing with all my spare time.
I know that there are a wide range of people that read and follow this blog. Some of those people are themselves cancer patients, who are just beginning their journey and their battle, or who are well into their treatment regimen. It has been my hope and prayer, all along, as I have maintained this blog, that I might be a source of hope and inspiration to some of those brothers or sisters. My battle and my journey have been unique to me. My emotional and physical make up are different than anyone else. My treatment routine and my reaction thereto, has been uniquely my own. How someone else reacts, or what their outcome may be, will be unique to their situation. But some aspects of my experience can be shared, and perhaps be of benefit or encouragement. My faith, my attitude and outlook, my support network, my determination and perseverance, any and all of these can be adopted or utilized by others in varying degrees, to help them along their path. Some stories about cancer, and it's treatment, are filled with sickness, pain, anguish and depression, hardship and strife. I have seen and met these people during my time at Duke Cancer Center. But those are not part of my story. My path has included both highs and lows. But my lows have not been as low as those of many others. And my highs have been higher and more frequent than the levels of other brothers and sisters. I can not tell others how to fight their fight, or how to rise above their situation. Only they can determine that. But I can offer hope. I can say that my experience indicates that it does not have to be total suffering and absolute hell on earth. If only one person can draw hope and strength from reading about my experience, then I will have been blessed beyond measure.
Friday, June 7, 2013
What a week, what a month, what a year
Several significant dates and events have all come together this week, and what a grand week it has been.
Yesterday was the one year anniversary of my cancer diagnosis. It has been a year filled with many emotional, physical and spiritual challenges, but we have met them all and have emerged victorious.
Today is my 20th and final radiation treatment. The only side effect I have noticed is the return of my fatigue. I was just beginning to get my strength back and the cumulative effects of the radiation have knocked me back down again. But the good news is that this should be the last series of treatments that I have to go through, and I should now be able to regain my strength and stamina permanently.
Last Tuesday was Day 90. I can't believe it has been 3 months since my bone marrow transplant, and that is a very significant milestone for an autologus transplant patient. While my recovery is not totally complete, and my immune system is still being reestablished, I can now resume most of my normal activities.
And yesterday we headed back to Duke to meet with Dr. Horwitz, for my 3 month followup visit. My blood work looked just fine, his list of questions was answered satisfactorily, and the visit could not have gone better. He confirmed I have reached the point that we all hoped and prayed would arrive: I am now in complete remission, will need no further treatment, and will simply be on a routine followup schedule for the next several years with periodic scans to confirm that the cancer has not returned.
Praise the Lord! Twelve months ago we were struggling to figure out how to deal with devistating news. Today we are rejoicing in my clean bill-of-health, and looking forward to living our lives without having cancer as a central focus of our daily existence.
All in all I would say this has been a pretty darn good week.
Yesterday was the one year anniversary of my cancer diagnosis. It has been a year filled with many emotional, physical and spiritual challenges, but we have met them all and have emerged victorious.
Today is my 20th and final radiation treatment. The only side effect I have noticed is the return of my fatigue. I was just beginning to get my strength back and the cumulative effects of the radiation have knocked me back down again. But the good news is that this should be the last series of treatments that I have to go through, and I should now be able to regain my strength and stamina permanently.
Last Tuesday was Day 90. I can't believe it has been 3 months since my bone marrow transplant, and that is a very significant milestone for an autologus transplant patient. While my recovery is not totally complete, and my immune system is still being reestablished, I can now resume most of my normal activities.
And yesterday we headed back to Duke to meet with Dr. Horwitz, for my 3 month followup visit. My blood work looked just fine, his list of questions was answered satisfactorily, and the visit could not have gone better. He confirmed I have reached the point that we all hoped and prayed would arrive: I am now in complete remission, will need no further treatment, and will simply be on a routine followup schedule for the next several years with periodic scans to confirm that the cancer has not returned.
Praise the Lord! Twelve months ago we were struggling to figure out how to deal with devistating news. Today we are rejoicing in my clean bill-of-health, and looking forward to living our lives without having cancer as a central focus of our daily existence.
All in all I would say this has been a pretty darn good week.
Saturday, May 18, 2013
Day 73
Today is Day 73 post transplant. The magic number for an autologus transplant (using my own cells) seems to be 90 days and I am getting close. After 90 days the immune system has gotten fairly well reestablished, and while due caution is still in order, I can begin getting out and around more than before. I have started back going to church on Sundays, arriving 2 minutes after the service starts, sitting in the back row, and leaving 2 minutes before the service ends. After the service is over, that is still an awful lot of people mulling around in a small space, shaking hands and sometimes hugging your neck, so we will reserve that for later.
I am feeling pretty well on most fronts, although my main problem continues to be fatigue. I can tell a difference and some improvement if I look back a week or two, but I still tire easily after any exertion and can tell that it will be a long and slow journey back. I started radiation treatments this week, and while there should be few if any side effects from that, it is common to have fatigue after a few weeks of accumulated treatments. That's all I need - I was just getting headed in the right direction and then bumped into this big radiation machine. But that only lasts 3 more weeks and then I should be DONE with all the treatments the doctors have been able to dream up. Not sure how I will react to not having my body poked, poisoned, radiated and otherwise abused, but I am sure looking forward to it.
I read an article in the radiation waiting room this week that started out as follows.
Moving forward as a survivor. Your active treatment is finished. You have come through an incredible journey, and now you're ready to embrace life as a cancer survivor. You may look at things differently now and feel more grateful than ever for your life and health. But your also deeply concerned about what comes next.
It then goes on to talk about finding your "new normal". Much has happened, and much has changed, and finding out where and how you will experience changes to the "old normal" can be difficult. But somehow I think that I will do just fine adapting to life without cancer. And considering that about a year ago I was wondering if I would even be alive in May of 2013, I look forward with great joy to addressing each and every one of those changes as they arise.
I am feeling pretty well on most fronts, although my main problem continues to be fatigue. I can tell a difference and some improvement if I look back a week or two, but I still tire easily after any exertion and can tell that it will be a long and slow journey back. I started radiation treatments this week, and while there should be few if any side effects from that, it is common to have fatigue after a few weeks of accumulated treatments. That's all I need - I was just getting headed in the right direction and then bumped into this big radiation machine. But that only lasts 3 more weeks and then I should be DONE with all the treatments the doctors have been able to dream up. Not sure how I will react to not having my body poked, poisoned, radiated and otherwise abused, but I am sure looking forward to it.
I read an article in the radiation waiting room this week that started out as follows.
Moving forward as a survivor. Your active treatment is finished. You have come through an incredible journey, and now you're ready to embrace life as a cancer survivor. You may look at things differently now and feel more grateful than ever for your life and health. But your also deeply concerned about what comes next.
It then goes on to talk about finding your "new normal". Much has happened, and much has changed, and finding out where and how you will experience changes to the "old normal" can be difficult. But somehow I think that I will do just fine adapting to life without cancer. And considering that about a year ago I was wondering if I would even be alive in May of 2013, I look forward with great joy to addressing each and every one of those changes as they arise.
Wednesday, May 8, 2013
Off to see the wizard.
If you were to look at my cancer treatment in phases, the first phase was my diagnosis in June of last year and the subsequent chemotherapy treatments at Duke, as part of a clinical trial. Lasting for about 6 months, phase one was successful in eradicating the cancer cells throughout my body, with the exception of one lone persistent lymph node in my abdomen. That node seemed to able to resist any of the effects of the chemotherapy, and the scans at the end of treatment looked just like the scans at the beginning. But at least everything else was gone.
Phase two was my Bone Marrow Transplant, also at Duke. While much shorter than phase one in duration, it was definitely much more intense. My particular type of Lymphoma is a very aggressive cancer, and has a strong tendency for recurrence. The decision to undergo a BMT was based on the fact that even though the best available testing techniques (PET/CT scans) did not indicate the presence of any cancer cells (other than that one node), there could still be some cancer cells present that defy detection. The high dose chemotherapy utilized in the transplant process, while certainly not a guarantee, would further increase the likely hood that all cancer cells had been destroyed.
The PET/CT scan after my transplant provided a somewhat unexpected determination that the one persistent node had been completely resolved, and I was now considered to be in complete remission. When I say that this determination was somewhat unexpected, it serves as yet another example of how God can work above and beyond all that we often ask or hope for. As a friend of ours often says, "You can't put God in a box".
Phase three will begin next week. Even though there is no detectable evidence of cancer cells anywhere, that formerly persistent node is still concerning. My team of physicians, in whom I have the utmost confidence, advise that if my Lymphoma should return, it would most likely start in that node. So to add another level of insurance, starting next week I will begin radiation treatments to further "zap" that one node. So for the next four weeks I will undergo radiation treatments 5 days per week, for a total of 20 treatments. That is 20 times I will travel down the yellow brick road to see the radiation wizard. Fortunately, the radiology department here at our local medical complex has the requisite equipment and capabilities that I need. So the wizard is only a ten minute drive down the yellow brick road, rather than a 1 1/2 hour trip back to Duke. The difference in travel time is huge.
So next week I begin what I expect to be the final phase of my cancer treatment journey. I suppose you could say that there is still a phase four because for the next 5 years or so I will need to get periodic testing to confirm that the cancer is still gone. But this phase will be the final active treatment phase. It should conclude within just a few days of the one year anniversary of my initial diagnosis. And what a year it has been !!!
Phase two was my Bone Marrow Transplant, also at Duke. While much shorter than phase one in duration, it was definitely much more intense. My particular type of Lymphoma is a very aggressive cancer, and has a strong tendency for recurrence. The decision to undergo a BMT was based on the fact that even though the best available testing techniques (PET/CT scans) did not indicate the presence of any cancer cells (other than that one node), there could still be some cancer cells present that defy detection. The high dose chemotherapy utilized in the transplant process, while certainly not a guarantee, would further increase the likely hood that all cancer cells had been destroyed.
The PET/CT scan after my transplant provided a somewhat unexpected determination that the one persistent node had been completely resolved, and I was now considered to be in complete remission. When I say that this determination was somewhat unexpected, it serves as yet another example of how God can work above and beyond all that we often ask or hope for. As a friend of ours often says, "You can't put God in a box".
Phase three will begin next week. Even though there is no detectable evidence of cancer cells anywhere, that formerly persistent node is still concerning. My team of physicians, in whom I have the utmost confidence, advise that if my Lymphoma should return, it would most likely start in that node. So to add another level of insurance, starting next week I will begin radiation treatments to further "zap" that one node. So for the next four weeks I will undergo radiation treatments 5 days per week, for a total of 20 treatments. That is 20 times I will travel down the yellow brick road to see the radiation wizard. Fortunately, the radiology department here at our local medical complex has the requisite equipment and capabilities that I need. So the wizard is only a ten minute drive down the yellow brick road, rather than a 1 1/2 hour trip back to Duke. The difference in travel time is huge.
So next week I begin what I expect to be the final phase of my cancer treatment journey. I suppose you could say that there is still a phase four because for the next 5 years or so I will need to get periodic testing to confirm that the cancer is still gone. But this phase will be the final active treatment phase. It should conclude within just a few days of the one year anniversary of my initial diagnosis. And what a year it has been !!!
Thursday, April 25, 2013
And the doctor said.....
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
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
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 !!!!!!!!
Friday, March 29, 2013
Day 23
Looking at the calendar, I find that this is Day 23, after my transplant. So 24 days ago I had my baby stem cells transplanted back into my blood stream, to begin reestablishing my bone marrow and my immune system. I am pleased to report that everything seems to be coming along nicely, and while I still have a long way to go, my progress seems to be slow and steady.
We have been back home for a little over a week now, and while I grew to love and cherish all of the staff at Duke's Adult Bone Marrow Transplant, I much prefer being back in my more comfortable and familiar surroundings. Like the young lady from Kansas said, "There's no place like home".
Earlier this week, I visited my local Oncologist's office for some blood work and an assessment exam. The blood work was the first I had received since leaving Duke. I must admit that it was very reassuring to get lab results daily while at Duke, so that we could see the progress on various measures. When Duke said we were discharged and free to return home, it was exceedingly welcome news, but it was also a bit scary not being able to get those daily report cards. So this latest set of test results was viewed with much anticipation. The details indicated that I am gaining ground on ALL fronts, some quite significantly and others less impressive but still well within acceptable levels. Praise the Lord! I am scheduled for weekly testing for the foreseeable future.
So much for the more measurable and quantifiable metrics. The main thing I tend to pay the most attention to is how I feel, and I am pleased to report that we are also making good progress on that front. I have developed my own sort of Richter Scale to measure my status: I Feel Bad, I Feel OK, I Feel Good, I Feel Great. At the present time the needle is pointing to I Feel OK. Having spent more time that I really wanted on the I Feel Bad level right after my transplant, I am very satisfied to just be feeling OK. OK beats Bad every day. Each day I seem to make a little more progress, although some days are about the same or even a little backwards, but the overall trend line is definitely headed in the right direction. Our daughter describes it as taking baby steps. But when I look back to where I was a week ago, I can see definite improvement. I am getting out for a mile or so walk each day since it is well established that exercise is a definite aid to recovery. My appetite is very good, so I am able to maintain a continual intake of good, nourishing foods (with a little junk food mixed in here and there too).
My biggest problem continues to be fatigue, and I know that this aspect will be one of the later facets to respond and improve. So my patience quotient needs to remain high, as I await with much anticipation moving the needle up to the I Feel Good level.
http://0729jimd.blogspot.com
We have been back home for a little over a week now, and while I grew to love and cherish all of the staff at Duke's Adult Bone Marrow Transplant, I much prefer being back in my more comfortable and familiar surroundings. Like the young lady from Kansas said, "There's no place like home".
Earlier this week, I visited my local Oncologist's office for some blood work and an assessment exam. The blood work was the first I had received since leaving Duke. I must admit that it was very reassuring to get lab results daily while at Duke, so that we could see the progress on various measures. When Duke said we were discharged and free to return home, it was exceedingly welcome news, but it was also a bit scary not being able to get those daily report cards. So this latest set of test results was viewed with much anticipation. The details indicated that I am gaining ground on ALL fronts, some quite significantly and others less impressive but still well within acceptable levels. Praise the Lord! I am scheduled for weekly testing for the foreseeable future.
So much for the more measurable and quantifiable metrics. The main thing I tend to pay the most attention to is how I feel, and I am pleased to report that we are also making good progress on that front. I have developed my own sort of Richter Scale to measure my status: I Feel Bad, I Feel OK, I Feel Good, I Feel Great. At the present time the needle is pointing to I Feel OK. Having spent more time that I really wanted on the I Feel Bad level right after my transplant, I am very satisfied to just be feeling OK. OK beats Bad every day. Each day I seem to make a little more progress, although some days are about the same or even a little backwards, but the overall trend line is definitely headed in the right direction. Our daughter describes it as taking baby steps. But when I look back to where I was a week ago, I can see definite improvement. I am getting out for a mile or so walk each day since it is well established that exercise is a definite aid to recovery. My appetite is very good, so I am able to maintain a continual intake of good, nourishing foods (with a little junk food mixed in here and there too).
My biggest problem continues to be fatigue, and I know that this aspect will be one of the later facets to respond and improve. So my patience quotient needs to remain high, as I await with much anticipation moving the needle up to the I Feel Good level.
http://0729jimd.blogspot.com
Saturday, March 23, 2013
My support network.
My battle with cancer over the last nine months has been a very consuming journey. While I would not recommend it to anyone, there have been some positive and enlightening aspects, that most likely would have been missed if I had continued on with my "normal" lifestyle.
Without question, one of the major areas I have grown to appreciate more than ever, is my support network. All of those family and friends that have always been there but I just took them for granted. To paraphrase an old saying, the members of your support team are like stars. You don't always see them, but you know they are always there....
The shining star of my support network is my amazing and wonderful wife Holly. Without her I don't know what I would have done. After 45 years of marriage, she knows me better than anyone else, and in spite of that she has stood by me through thick and thin. And lately it has been pretty trying. But she has never wavered in being my rock and my primary care giver. I am so very, very blessed.
Then there are the other 10 members of the Davis family. I could not be more proud of them, individually and as a group. This picture is from last Christmas. We had taken a regular family photo, and then someone said to take one with everyone looking scary. The scary one is my favorite, and captures the spirit of this bunch of goof balls. Their love, and support, and prayers have always been so special to me, but during these recent times, even more so. I am so very, very blessed.
Our church family has also provided a wealth of support and strength. Between choir members, a couple of bible studies, a Sunday school class, and those many smiling faces you see each week, we have received enough cards and letters of encouragement to open our own Hallmark store. Talk about an amazing group of prayer warriors. I am so very, very blessed.
Last, but by no means least, is a long list of neighbors and friends, who have picked up our mail, watered our plants, brought by meals, and even the fellow next door who cut the grass.
Without question, one of the major areas I have grown to appreciate more than ever, is my support network. All of those family and friends that have always been there but I just took them for granted. To paraphrase an old saying, the members of your support team are like stars. You don't always see them, but you know they are always there....
The shining star of my support network is my amazing and wonderful wife Holly. Without her I don't know what I would have done. After 45 years of marriage, she knows me better than anyone else, and in spite of that she has stood by me through thick and thin. And lately it has been pretty trying. But she has never wavered in being my rock and my primary care giver. I am so very, very blessed.
Then there are the other 10 members of the Davis family. I could not be more proud of them, individually and as a group. This picture is from last Christmas. We had taken a regular family photo, and then someone said to take one with everyone looking scary. The scary one is my favorite, and captures the spirit of this bunch of goof balls. Their love, and support, and prayers have always been so special to me, but during these recent times, even more so. I am so very, very blessed.
Our church family has also provided a wealth of support and strength. Between choir members, a couple of bible studies, a Sunday school class, and those many smiling faces you see each week, we have received enough cards and letters of encouragement to open our own Hallmark store. Talk about an amazing group of prayer warriors. I am so very, very blessed.
It is unfortunate that it sometimes takes difficult times for many of us to fully appreciate those around us who care for and about us, and who can rise to any circumstance to provide love and support. I am so very, very blessed.
Tuesday, March 19, 2013
Surprise, surprise
Over the last several weeks I have developed a much deeper understanding of my body and how it works, and I have learned to be able to discern when things begin to change, whether that is for the better or the worse. I don't know that I have ever been this aware of what is going on inside of me, but going through this bone marrow transplant process has been very enlightening in many respects.
After the high dose chemotherapy, the subsequent death of many of my fast growing cells, and the transplant of my stem cells back into my bloodstream, many of my blood counts and blood chemistries fell far below the levels considered minimums for the continuance of life itself. Drugs, antibiotics, blood transfusions, platelet infusions and electrolytic supplements kept my body functioning in spite of itself, until it had reestablished the capability to produce all of these by itself. It took somewhere between 7 and 10 days for this capability to return.
The last several days have been spent letting my body rebuild and regenerate. Gradually my daily blood test results have indicated that my bone marrow has been recreated, and is functioning to reestablish the building blocks I need to improve from here. Slowly, but steadily, my counts have been climbing and my need for supplements has been falling. My body is working harder than it ever has, around the clock, to maintain and rebuild. So while the numbers have been increasing in amazing proportions, I am constantly in a state of total exhaustion. In time, when my body has a chance to ease off a bit, I should begin to notice an increase in my energy level. But first things first - I'll just be taking a few extra naps along the way.
The human body is an amazing and wondrous creation, and the One who created it, in all of it's glory, has been with me through every second of this transplant process. By His hand I am being rebuilt and restored. I have seen so vividly, during this entire process, that being able to rest in His love and His grace is of such monumental importance. Having a close and abiding relationship with Him, BEFORE stepping into the fiery furnace, is so terribly important. That relationship is not something that can be put off until the last minute.
This morning I went to the clinic for my usual daily lab tests, expecting to hear that I needed a few supplements. Instead, I was informed that I needed only a slight dose of magnesium and was free to return to our apartment. Further, if tomorrow's lab results are as good as today's, I will be discharged from the transplant program and free to return home. Holly and I can hardly contain our excitement. Our original target date for being able to return home was next Tuesday, so we are running almost a week ahead of schedule. Praise The Lord!!
Much remains ahead in terms of followup visits and reassessment testing, but to say that we have reached another major milestone is to understate the obvious. God is so good.
After the high dose chemotherapy, the subsequent death of many of my fast growing cells, and the transplant of my stem cells back into my bloodstream, many of my blood counts and blood chemistries fell far below the levels considered minimums for the continuance of life itself. Drugs, antibiotics, blood transfusions, platelet infusions and electrolytic supplements kept my body functioning in spite of itself, until it had reestablished the capability to produce all of these by itself. It took somewhere between 7 and 10 days for this capability to return.
The last several days have been spent letting my body rebuild and regenerate. Gradually my daily blood test results have indicated that my bone marrow has been recreated, and is functioning to reestablish the building blocks I need to improve from here. Slowly, but steadily, my counts have been climbing and my need for supplements has been falling. My body is working harder than it ever has, around the clock, to maintain and rebuild. So while the numbers have been increasing in amazing proportions, I am constantly in a state of total exhaustion. In time, when my body has a chance to ease off a bit, I should begin to notice an increase in my energy level. But first things first - I'll just be taking a few extra naps along the way.
The human body is an amazing and wondrous creation, and the One who created it, in all of it's glory, has been with me through every second of this transplant process. By His hand I am being rebuilt and restored. I have seen so vividly, during this entire process, that being able to rest in His love and His grace is of such monumental importance. Having a close and abiding relationship with Him, BEFORE stepping into the fiery furnace, is so terribly important. That relationship is not something that can be put off until the last minute.
This morning I went to the clinic for my usual daily lab tests, expecting to hear that I needed a few supplements. Instead, I was informed that I needed only a slight dose of magnesium and was free to return to our apartment. Further, if tomorrow's lab results are as good as today's, I will be discharged from the transplant program and free to return home. Holly and I can hardly contain our excitement. Our original target date for being able to return home was next Tuesday, so we are running almost a week ahead of schedule. Praise The Lord!!
Much remains ahead in terms of followup visits and reassessment testing, but to say that we have reached another major milestone is to understate the obvious. God is so good.
Sunday, March 17, 2013
Day 11
My post from 3 days ago was just about at the low point of everything. But since then I have started to rebound. My white blood cell count, one of the most closely followed metrics, was at less than 0.1 for 3 or 4 consecutive days. Then all of a sudden yesterday it jumped to 0.7 and today reached 2.2 (normal range is 3.2 to 9.8). This is solid evidence that my stem cells have begun rebuilding my bone marrow, which in turn produces lots of the good things my body needs, like white cells, red cells, hemoglobin, platelets, etc., and last but not least my immune system. I am on the road back and could not be more thrilled
As a result of having some semblance of an immune system, things are starting to healing again, like my mouth sores. They are still there but not as severely as before, which means that eating is becoming less of a chore. My energy level for the last few days has been somewhat better than before, but a long way from being acceptable. The whole process has left my mind in a bit of a state of disarray. Not sure how much has been the drugs and how much has been the stress, but sleep has been fitful at times and it is difficult to focus on much of anything.
But I definitely would say that I feel I have turned the corner. I wouldn't say that I feel good, but I have certainly felt worse and expect that things will continue to improve over the coming days. There is still a long way to go before things will be back to "normal", but I am now finally heading in the right direction.
As a result of having some semblance of an immune system, things are starting to healing again, like my mouth sores. They are still there but not as severely as before, which means that eating is becoming less of a chore. My energy level for the last few days has been somewhat better than before, but a long way from being acceptable. The whole process has left my mind in a bit of a state of disarray. Not sure how much has been the drugs and how much has been the stress, but sleep has been fitful at times and it is difficult to focus on much of anything.
But I definitely would say that I feel I have turned the corner. I wouldn't say that I feel good, but I have certainly felt worse and expect that things will continue to improve over the coming days. There is still a long way to go before things will be back to "normal", but I am now finally heading in the right direction.
Thursday, March 14, 2013
Day 8.
We are approaching the end of Day 8 and my various counts have all pretty much reached zero. Typically, transplant patients hit bottom about Day 7 to Day 10 and I am proving to be very typical. After hitting bottom, the body slowly but steadily begins to rebuild what was previously destroyed during the high dose chemotherapy. But in the interim I have no immune system, which makes me highly susceptible to any germ or infection that might come my way. My gas tank gauge is below empty and I have barely enough energy to get from bed to the breakfast table. My bodily reserves have been depleted. Over the last 3 days I have received three platelet infusions, two blood transfusions, two infusions each of potassium and magnesium, plus a few others that promptly slipped my mind. We spent four hours Tuesday night in the hospital getting infused with various antibiotics to counteract a temperature that I developed (which is quite common). And then there are the mouth sores that have formed in my mouth, esophagus and stomach, which makes eating a bit more difficult.
Other than that I feel just fine.
Seriously, I would say this has been one of the least pleasant weeks of my entire life. But I seem to be sleeping well and food continues to taste "good", both of which are critical in the rebuilding process. Do I feel good - No! Do I feeling like I am going to die - No! Thanks to all for your thoughts and prayers. More later.
Other than that I feel just fine.
Seriously, I would say this has been one of the least pleasant weeks of my entire life. But I seem to be sleeping well and food continues to taste "good", both of which are critical in the rebuilding process. Do I feel good - No! Do I feeling like I am going to die - No! Thanks to all for your thoughts and prayers. More later.
Saturday, March 9, 2013
Details, details.
My transplant started last Wednesday, which means that this is Day 3. I have been making daily visits to the ABMT Clinic to have blood samples drawn and analysis performed. The results are reviewed and if any type of treatment is required, such as adding potassium or magnesium, that is performed, after which I am sent back to our apartment to repeat the cycle again tomorrow. This will continue until approximately Day 21, by which time I will hopefully be showing enough progress to be released to finally return home.
Each day, twenty-one different tests are run on my blood samples. While all are reviewed carefully, there are three that are monitored most closely. The first is hemoglobin, which carries oxygen to cells throughout the body. Low hemoglobin levels cause anemia, which in turn causes fatigue or weakness. The normal range for hemoglobin is 13.7/17.3. My level is 10.0 and if it drops below 9.0, they will probably give me a blood transfusion to boost my levels. The second is platelet count, which is a measure of the blood's clotting capability. The normal range is 150/450 and my count is 36 which means I am at risk for excessive bleeding. Most likely I will receive an infusion of platelets in the next day or so. Finally, there is the white blood cell count, which has a normal range of 3.2/9.8, and my level is 0.9. White cells are cells of the immune system involved in defending the body against both infectious disease and foreign materials. So at the present time I have essentially no immune system.
While all three of these are alarmingly low, they are also expected to be falling below normal levels. In the next few days my white cell count will probably fall literally to zero. All are the unfortunate casualties of the high dose chemotherapy treatments I received a week ago. High dose chemotherapy is more effective than standard chemotherapy at destroying cancer cells, but it also does so much damage to the bone marrow that the marrow cannot recover on it's own. That is where the stem cell transplant 'rescues' the patient by providing healthy stem cells to begin rebuilding the bone marrow, which in turn begins producing new hemoglobin, platelets, white cells, etc. But it takes time for the marrow to be rebuilt and new cells to begin being made. In the meantime, the counts fall to very low levels.
One thing that I did not really understand until just recently was, if the high dose chemotherapy destroys fast growing cells (like cancer) and I received my last high dose treatment on Tuesday, followed on Wednesday by transplanting my stem cells, why wouldn't the chemo kill the stems cells too? Good question, they said. The answer is that the chemo itself attaches to the fast growing cells within the first 24 hours after being infused. After that period, there is little 'active' chemo left in the system, most having already attached to cells and the actual destruction takes place over the next 1 to 5 days. So when the stem cells are reintroduced into the blood stream, they are relatively safe and can begin their migration into the bone marrow to begin the rebuilding process.
While the rebuilding begins slowly, the destruction is in high gear, so for a short period of time the body can not replace cells as fast as they are being destroyed and the counts fall. That is where I am right now, and that is why they watch you so very closely during this period. Hopefully a week from now my counts will begin to recover, but in the meantime, please excuse me if I seem to go out of my way to avoid contact with other people, who carry potentially lethal 'bugs'. But until my counts recover, that is the way it shall remain.
I sometimes go into far more detail here than most will find necessary, and this is probably one of my deeper excursions. But I do find it very fascinating, and have received comments that some of you do so also. Other than being tired all the time, a definite result of my low hemoglobin, I am doing amazingly well otherwise. I continue to be blessed by being able to avoid most of the undesirable side effects of chemotherapy, and I continue to give the praise to my gracious Heavenly Father. PTL!
Each day, twenty-one different tests are run on my blood samples. While all are reviewed carefully, there are three that are monitored most closely. The first is hemoglobin, which carries oxygen to cells throughout the body. Low hemoglobin levels cause anemia, which in turn causes fatigue or weakness. The normal range for hemoglobin is 13.7/17.3. My level is 10.0 and if it drops below 9.0, they will probably give me a blood transfusion to boost my levels. The second is platelet count, which is a measure of the blood's clotting capability. The normal range is 150/450 and my count is 36 which means I am at risk for excessive bleeding. Most likely I will receive an infusion of platelets in the next day or so. Finally, there is the white blood cell count, which has a normal range of 3.2/9.8, and my level is 0.9. White cells are cells of the immune system involved in defending the body against both infectious disease and foreign materials. So at the present time I have essentially no immune system.
While all three of these are alarmingly low, they are also expected to be falling below normal levels. In the next few days my white cell count will probably fall literally to zero. All are the unfortunate casualties of the high dose chemotherapy treatments I received a week ago. High dose chemotherapy is more effective than standard chemotherapy at destroying cancer cells, but it also does so much damage to the bone marrow that the marrow cannot recover on it's own. That is where the stem cell transplant 'rescues' the patient by providing healthy stem cells to begin rebuilding the bone marrow, which in turn begins producing new hemoglobin, platelets, white cells, etc. But it takes time for the marrow to be rebuilt and new cells to begin being made. In the meantime, the counts fall to very low levels.
One thing that I did not really understand until just recently was, if the high dose chemotherapy destroys fast growing cells (like cancer) and I received my last high dose treatment on Tuesday, followed on Wednesday by transplanting my stem cells, why wouldn't the chemo kill the stems cells too? Good question, they said. The answer is that the chemo itself attaches to the fast growing cells within the first 24 hours after being infused. After that period, there is little 'active' chemo left in the system, most having already attached to cells and the actual destruction takes place over the next 1 to 5 days. So when the stem cells are reintroduced into the blood stream, they are relatively safe and can begin their migration into the bone marrow to begin the rebuilding process.
While the rebuilding begins slowly, the destruction is in high gear, so for a short period of time the body can not replace cells as fast as they are being destroyed and the counts fall. That is where I am right now, and that is why they watch you so very closely during this period. Hopefully a week from now my counts will begin to recover, but in the meantime, please excuse me if I seem to go out of my way to avoid contact with other people, who carry potentially lethal 'bugs'. But until my counts recover, that is the way it shall remain.
I sometimes go into far more detail here than most will find necessary, and this is probably one of my deeper excursions. But I do find it very fascinating, and have received comments that some of you do so also. Other than being tired all the time, a definite result of my low hemoglobin, I am doing amazingly well otherwise. I continue to be blessed by being able to avoid most of the undesirable side effects of chemotherapy, and I continue to give the praise to my gracious Heavenly Father. PTL!
Wednesday, March 6, 2013
Day Zero.
In bone marrow transplant parlance, the actual day when the stem cells are transplanted back into the bloodstream is referred to as Day Zero. Prior to that, days are referred to with negatives, so my high dose chemptherapy was on days -6, -5, -4, -3, -2 and -1. The transplant is performed on Day Zero and subsequent days a referred to as Day 1, Day 2, Day 3, etc.
Yesterday, Day -1, I was discharged from the hospital and we moved into our apartment, just a short distance from the Transplant Clinic. The high dose chemo treatments I received while in the hospital were not something I would recommend if you happen to be looking for something different to do for a few days. My fatigue level has increased, but other than that, there were almost no side effects. My track record of being able to successfully endure almost all of the rigors of chemotherapy, remains intact.
Today was Day Zero and I reported to the ABMT Clinic to have my previously harvested stem cells returned to my bloodstream. This day is also referred to as your "Birthday". For as terribly significant as this day is in the transplant process, it was in fact very anticlimactic. Today only required about one hour to complete.
I was told that my transplant would actually be spread over two days, today and tomorrow, given that there were so many stem cells harvested that it was decided to transplant them over two days. I guess that is good news that I have so many stem cells to get back, although it seems like it is going to mess up that highly scientific day numbering system. Maybe tomorrow will be Day 1/2 :-)
From this point forward everything is focused on recovery. No more chemotherapy, no more Apheresis, no more invasive and toxic drugs or procedures. Once my stem cells are back in place, they will begin to rebuild my bone marrow, blood cells and immune system. It is a slow process but now everything is geared towards building up, not tearing down. The Bone Marrow Transplant process is an amazing scientific event, and can be quite intimidating and scary if you dwell on it, and allow it to plant fear in your spirit. Having a high degree of trust and confidence in my medical team goes a long way towards allaying any concerns. Even more important, however, is the belief that my Heavenly Father is watching over me every second of every minute of every day. It says in Hebrews 11:1, "Faith is the substance of things hoped for, the evidence of things not seen. " This battle with cancer has had many facets, but one of the most important is how it has increased my faith in God Almighty. Without that, this journey would have been far more arduous and burdensome. Not that it has not had it's lower points, but without question my faith has been a crucial element in my response to a life threatening situation.
http://0729jimd.blogspot.com
Yesterday, Day -1, I was discharged from the hospital and we moved into our apartment, just a short distance from the Transplant Clinic. The high dose chemo treatments I received while in the hospital were not something I would recommend if you happen to be looking for something different to do for a few days. My fatigue level has increased, but other than that, there were almost no side effects. My track record of being able to successfully endure almost all of the rigors of chemotherapy, remains intact.
Today was Day Zero and I reported to the ABMT Clinic to have my previously harvested stem cells returned to my bloodstream. This day is also referred to as your "Birthday". For as terribly significant as this day is in the transplant process, it was in fact very anticlimactic. Today only required about one hour to complete.
I was told that my transplant would actually be spread over two days, today and tomorrow, given that there were so many stem cells harvested that it was decided to transplant them over two days. I guess that is good news that I have so many stem cells to get back, although it seems like it is going to mess up that highly scientific day numbering system. Maybe tomorrow will be Day 1/2 :-)
From this point forward everything is focused on recovery. No more chemotherapy, no more Apheresis, no more invasive and toxic drugs or procedures. Once my stem cells are back in place, they will begin to rebuild my bone marrow, blood cells and immune system. It is a slow process but now everything is geared towards building up, not tearing down. The Bone Marrow Transplant process is an amazing scientific event, and can be quite intimidating and scary if you dwell on it, and allow it to plant fear in your spirit. Having a high degree of trust and confidence in my medical team goes a long way towards allaying any concerns. Even more important, however, is the belief that my Heavenly Father is watching over me every second of every minute of every day. It says in Hebrews 11:1, "Faith is the substance of things hoped for, the evidence of things not seen. " This battle with cancer has had many facets, but one of the most important is how it has increased my faith in God Almighty. Without that, this journey would have been far more arduous and burdensome. Not that it has not had it's lower points, but without question my faith has been a crucial element in my response to a life threatening situation.
http://0729jimd.blogspot.com
Sunday, March 3, 2013
Half way through.
I have reached a milestone of sorts. After 3 days in the hospital and 7 chemo infusions, I have crossed the halfway mark in the high dose chemo phase of my treatment. I know that some are wondering how I am doing, and I am happy to report that so far things are going just fine. No real side effects from a seemingly endless stream of nurses toting IV bags full of "goodies". My appetite is good and I am getting out for a few walks each day with my IV pole. The only real negative is that I have not been sleeping all that well, which isn't unusual for a stay in the hospital, but even that was better last night.
This is a shorter post since my keying skills and hospital beds don't get along too well, but I did want to let everyone know that so far I am doing nicely, and looking forward to getting this period of my treatment in the rear view mirror.
This is a shorter post since my keying skills and hospital beds don't get along too well, but I did want to let everyone know that so far I am doing nicely, and looking forward to getting this period of my treatment in the rear view mirror.
Thursday, February 28, 2013
Out for a stroll.
Well I am all checked into the Duke Hospital Transplant Unit (9200) and ready to start my high dose chemo regimen. I am scheduled to receive the BEAM protocol, BEAM standing for BCNU, Etoposide, ARA-C, and Melphalen. (Who in the world sits around and dreams up the names and acronyms for these drugs.) But before rushing right into my first treatment, they put me on a fluid IV to get me hydrated for my first infusion later today. So in the meantime, I went out for a stroll on the floor to get some exercise.
14 laps equals one mile and they say that regular exercise is one good way to assist in quicker recovery from chemptherapy treatments, so I have been trying to keep up my daily exercise. Learning how to steer an IV pole is not especially difficult, but when you get two or three patients in the halls at the same time, it can be an exciting, and sometime hazardous experience.
The chemotherpy infusions are broken into one hour doses. Today I start with a one hour infusion of BCNU, also known as Carmustine, which is a derivative of a mustard gas compound. Now doesn't that just give you a warm and fuzzy feeling. On Friday, Saturday, Sunday and Monday I get two doses each day of ARA-C (Cytarabine) at 9:00 AM and 9:00 PM , and one dose daily of Etoposide at 10:00 AM. This continues for 4 days, and then on Tuesday I get 1 hour of Melphalen, only to be discharged and sent home to our apartment. So for the next 6 days I will never go longer than 12 hours without getting another chemo infusion. Now I better understand why this is referred to as the high dose chemo phase.
My nurse just brought me a small chocolate milk shake from a batch that was just mixed up. I can see that the next several days will be a series of highs and a series of lows. Have to go now and enjoy one of my highs.
14 laps equals one mile and they say that regular exercise is one good way to assist in quicker recovery from chemptherapy treatments, so I have been trying to keep up my daily exercise. Learning how to steer an IV pole is not especially difficult, but when you get two or three patients in the halls at the same time, it can be an exciting, and sometime hazardous experience.
The chemotherpy infusions are broken into one hour doses. Today I start with a one hour infusion of BCNU, also known as Carmustine, which is a derivative of a mustard gas compound. Now doesn't that just give you a warm and fuzzy feeling. On Friday, Saturday, Sunday and Monday I get two doses each day of ARA-C (Cytarabine) at 9:00 AM and 9:00 PM , and one dose daily of Etoposide at 10:00 AM. This continues for 4 days, and then on Tuesday I get 1 hour of Melphalen, only to be discharged and sent home to our apartment. So for the next 6 days I will never go longer than 12 hours without getting another chemo infusion. Now I better understand why this is referred to as the high dose chemo phase.
My nurse just brought me a small chocolate milk shake from a batch that was just mixed up. I can see that the next several days will be a series of highs and a series of lows. Have to go now and enjoy one of my highs.
Monday, February 25, 2013
Here we go.
On Wednesday of this week we head back to Duke for an appointment with Dr. Horwitz, followed by a few final tests. Then on Thursday I am admitted to the Adult Bone Marrow Transplant (ABMT) unit of the hospital, where I will receive 5 consecutive days of high dose chemotherapy, which is referred to as the conditioning or preparative regimen. On the following Tuesday I will be discharged from the hospital and on that Wednesday my stem cells, collected last week, will be re infused back into my bloodstream. That is followed by a minimum of 21 days of rest and recovery, under the close and watchful eyes of the ABMT medical staff. For those of you who like the short version, you can stop reading here and check back in a few days for updates.
For those with more curious minds, the high dose chemo serves the purpose of eradicating or destroying the bone marrow and any remaining cancer cells throughout the body. Unfortunately, the levels of chemotherapy are so high that it also destroys the body's immune system, including most red and white blood cells, and platelets. During this period I will be at high risk for infections since my immune system is basically nonexistent. The re-infusion of my stored stem cells, while referred to as the transplant, is actually a rescue, in the sense that without those cells my body would most likely not be able to continue to sustain life. The high dose chemo destroys the cancer, and the stem cells rescue me from the unavoidable side effects of the chemo. The infused cells will find their way back into the marrow portion of the bones, where they will reestablish my bone marrow and then begin the production of new blood components, most notably red and white blood cells, and platelets.
For minimum period of 21 days, following the transplant, Holly and I will be living in an apartment very close to the ABMT clinic. Each morning we will go to the clinic to have blood samples drawn and the results reviewed. If everything looks satisfactory we will be released and will return to the apartment for the rest of the day. If any problems or areas of concern are identified, we will stay at the clinic for as long as necessary to address the issue. This might involve a blood transfusion to elevate platelet counts, administering one or more drugs to boost calcium or potassium levels, etc., etc. When the issues are resolved we will return to the apartment, only to return the next day and repeat the process all over. Doesn't that sound like an exciting routine to look forward to. During this period I will be the guy you see wearing the little blue face mask every where I go.
At the end of 21 days, if everything looks satisfactory, we will be released from the daily clinic routine and be allowed to return to our home-sweet-home. The recovery and rebuilding process will continue over the next 6 to 9 months, before things will be back to "normal". Periodic visits back to the ABMT clinic will continue until they are satisfied than my system can be trusted to maintain itself naturally.
For those of you who selected the earlier option to continue reading, you now know more about bone marrow transplants than most of the people you meet each day. The concept is fairly simple. The actual implementation is terribly complex. Fortunately, I have an unbelievable team of specialists that will be watching me day and night to be sure that the end result is achieved as desired. And I have a Lord that created the universe, caused the mountains and seas to be formed, and formed me in my mother's womb. His omnipotent knowledge and perfect love will be with me every second of every moment. What more could I ask for?
For those with more curious minds, the high dose chemo serves the purpose of eradicating or destroying the bone marrow and any remaining cancer cells throughout the body. Unfortunately, the levels of chemotherapy are so high that it also destroys the body's immune system, including most red and white blood cells, and platelets. During this period I will be at high risk for infections since my immune system is basically nonexistent. The re-infusion of my stored stem cells, while referred to as the transplant, is actually a rescue, in the sense that without those cells my body would most likely not be able to continue to sustain life. The high dose chemo destroys the cancer, and the stem cells rescue me from the unavoidable side effects of the chemo. The infused cells will find their way back into the marrow portion of the bones, where they will reestablish my bone marrow and then begin the production of new blood components, most notably red and white blood cells, and platelets.
For minimum period of 21 days, following the transplant, Holly and I will be living in an apartment very close to the ABMT clinic. Each morning we will go to the clinic to have blood samples drawn and the results reviewed. If everything looks satisfactory we will be released and will return to the apartment for the rest of the day. If any problems or areas of concern are identified, we will stay at the clinic for as long as necessary to address the issue. This might involve a blood transfusion to elevate platelet counts, administering one or more drugs to boost calcium or potassium levels, etc., etc. When the issues are resolved we will return to the apartment, only to return the next day and repeat the process all over. Doesn't that sound like an exciting routine to look forward to. During this period I will be the guy you see wearing the little blue face mask every where I go.
At the end of 21 days, if everything looks satisfactory, we will be released from the daily clinic routine and be allowed to return to our home-sweet-home. The recovery and rebuilding process will continue over the next 6 to 9 months, before things will be back to "normal". Periodic visits back to the ABMT clinic will continue until they are satisfied than my system can be trusted to maintain itself naturally.
For those of you who selected the earlier option to continue reading, you now know more about bone marrow transplants than most of the people you meet each day. The concept is fairly simple. The actual implementation is terribly complex. Fortunately, I have an unbelievable team of specialists that will be watching me day and night to be sure that the end result is achieved as desired. And I have a Lord that created the universe, caused the mountains and seas to be formed, and formed me in my mother's womb. His omnipotent knowledge and perfect love will be with me every second of every moment. What more could I ask for?
Friday, February 22, 2013
One more step completed.
On Tuesday I was the proud recipient of a "central line", or Hickman Port, which enabled me to spend the next two days tethered to this delightful piece of equipment.
I spent Wednesday and Thursday, for 6 hours each day, letting my new best friend extract approximately 4 million stems cells from my blood stream. I'm sure it wasn't exactly 4 million, but at that level what's a few thousand plus or minus. Those cells were then sent to the freezer, where they will remain until I am finished with the high dose chemo, and ready to have them "transplanted" back into my blood stream. They will then reestablish my bone marrow and begin rebuilding my white blood cells, red blood cells, platelets, plasma, etc. So getting a good supply of stem cells is a rather important step in the transplant process. Mission accomplished!
I can't say that this week has been an easy visit to Duke, but it really wasn't all that bad either. The main side effect was fatigue, or better make that exhaustion. I received 12 super doses of Neupogen and one super booster over the prior week and a half, to get my body kicked into high gear producing stem cells. Then the Apheresis machine recirculated my entire blood volume 3 to 4 times per day. All of that, coupled with the very normal apprehension of this unknown procedure, takes it's toll. I would say I slept 3 or 4 hours of the six that I was attached to the machine. The nursing staff said that is very normal, and it will probably take 2 or 3 days after returning home, before I get feeling better.
I am home now and taking full advantage of the peace and quiet to get rested up. I have a week before heading back to Duke for the high dose chemo, followed immediately by the transplant. But that is all several days away. In the meantime I plan to take it easy and get prepared to be reunited with my 4 million little buddies.
I spent Wednesday and Thursday, for 6 hours each day, letting my new best friend extract approximately 4 million stems cells from my blood stream. I'm sure it wasn't exactly 4 million, but at that level what's a few thousand plus or minus. Those cells were then sent to the freezer, where they will remain until I am finished with the high dose chemo, and ready to have them "transplanted" back into my blood stream. They will then reestablish my bone marrow and begin rebuilding my white blood cells, red blood cells, platelets, plasma, etc. So getting a good supply of stem cells is a rather important step in the transplant process. Mission accomplished!
I can't say that this week has been an easy visit to Duke, but it really wasn't all that bad either. The main side effect was fatigue, or better make that exhaustion. I received 12 super doses of Neupogen and one super booster over the prior week and a half, to get my body kicked into high gear producing stem cells. Then the Apheresis machine recirculated my entire blood volume 3 to 4 times per day. All of that, coupled with the very normal apprehension of this unknown procedure, takes it's toll. I would say I slept 3 or 4 hours of the six that I was attached to the machine. The nursing staff said that is very normal, and it will probably take 2 or 3 days after returning home, before I get feeling better.
I am home now and taking full advantage of the peace and quiet to get rested up. I have a week before heading back to Duke for the high dose chemo, followed immediately by the transplant. But that is all several days away. In the meantime I plan to take it easy and get prepared to be reunited with my 4 million little buddies.
Monday, February 18, 2013
God is so good.
Tomorrow is another visit to our home away from home, Duke Medical Center. I will get a Hickman port installed, which is just a fancy way of saying they will install a couple of plastic lines in my chest that connect to some large veins. These will be used to administer my chemotherapy, and the raft of other drugs that I will be receiving over the next few weeks. It keeps down the wear and tear of getting stuck with needles every time you turn around.
This week we will be staying in Durham on Tuesday, Wednesday and Thursday nights, before returning home on Friday. A few nights of sleeping in our own bed, and then it is back to Duke next Wednesday. I will be admitted to the hospital for high dose chemotherapy, but Holly will have to stay close by, until I am discharged from the hospital the following Tuesday. We will then need to stay nearby for a minimum of three weeks, so that I can make daily visits to the transplant clinic for my daily blood work and reassessment. That works out to about 30 nights that we will need to be staying somewhere near Duke in the next 5 weeks.
When someone is diagnosed with cancer, there are a multitude of issues and concerns that must be dealt with, some right away and others later on. One of these issues is finances. Treating cancer is not cheap. and depending on the type of treatment required, whether or not you will be able to work, what type of insurance coverage is available, etc., the financial consequences of a cancer diagnosis can be, in some instances, almost as devastating as the disease itself. Having to spend 30 nights in a hotel with no cooking capabilities, can add up to very large expenses very quickly. Staying in some type of apartment may reduce the cost of eating out, but generally is much more expensive than hotels. Trying to determine answers to this aspect of treatment simply adds to the stress and anxiety levels, that are already excessive.
Back in the early days of our journey with this monster, we knew that this would be something that we would need to address at some later time. But we knew that the Lord was well aware of our many needs, and that somehow he would prepare the way. Whenever we reached that point, he would show us the where and how. Part way through the clinical trial chemotherapy phase, we met with Dr. Horwitz and the bone marrow transplant team, to explore BMT as a possible future option. During that visit we were told that Duke would provide us with a local apartment from the time I was discharged from the hospital until we were released to return home. This apartment would be made available to us at no cost. What a blessing. We were so relieved and so grateful.
As suprising and wonderful as the news about the apartment was, that still left 6 or 8 nights, before and during my hospital stay, that would need to be addressed. With the majority of our housing requirement already taken care of, we would see about making arrangements for the remainder as the time grew nearer. Our daughter lives about 4 hours away in western North Carolina, and attends a weekly bible study group with some of friends. She had asked them to pray for me, and provided them with periodic updates on my progress. She had apparently mentioned our temporary housing need at some point, because one of her friends commented that her in-laws lived not far from Duke and had a guest house, and she would mention this to them. Recently, we were told that we were welcome to stay at their guest house as needed, at no expense to us.
Often, we get so busy with our daily lives, with our worries and aches and pains, with our relationships with other people, with the many things that occupy our minds, that we miss the many ways that God is working in our lives. The many ways, both large and small, that He is preparing our paths and providing for our needs. He doesn't always do things in quite the way that we might have imagined or preferred, because I have yet to get that fancy sports car that would just thrill my heart. But He is always there, and always watching out for each and every one of us. His blessing are many and His love is so pure and complete. God is so good.
This week we will be staying in Durham on Tuesday, Wednesday and Thursday nights, before returning home on Friday. A few nights of sleeping in our own bed, and then it is back to Duke next Wednesday. I will be admitted to the hospital for high dose chemotherapy, but Holly will have to stay close by, until I am discharged from the hospital the following Tuesday. We will then need to stay nearby for a minimum of three weeks, so that I can make daily visits to the transplant clinic for my daily blood work and reassessment. That works out to about 30 nights that we will need to be staying somewhere near Duke in the next 5 weeks.
When someone is diagnosed with cancer, there are a multitude of issues and concerns that must be dealt with, some right away and others later on. One of these issues is finances. Treating cancer is not cheap. and depending on the type of treatment required, whether or not you will be able to work, what type of insurance coverage is available, etc., the financial consequences of a cancer diagnosis can be, in some instances, almost as devastating as the disease itself. Having to spend 30 nights in a hotel with no cooking capabilities, can add up to very large expenses very quickly. Staying in some type of apartment may reduce the cost of eating out, but generally is much more expensive than hotels. Trying to determine answers to this aspect of treatment simply adds to the stress and anxiety levels, that are already excessive.
Back in the early days of our journey with this monster, we knew that this would be something that we would need to address at some later time. But we knew that the Lord was well aware of our many needs, and that somehow he would prepare the way. Whenever we reached that point, he would show us the where and how. Part way through the clinical trial chemotherapy phase, we met with Dr. Horwitz and the bone marrow transplant team, to explore BMT as a possible future option. During that visit we were told that Duke would provide us with a local apartment from the time I was discharged from the hospital until we were released to return home. This apartment would be made available to us at no cost. What a blessing. We were so relieved and so grateful.
As suprising and wonderful as the news about the apartment was, that still left 6 or 8 nights, before and during my hospital stay, that would need to be addressed. With the majority of our housing requirement already taken care of, we would see about making arrangements for the remainder as the time grew nearer. Our daughter lives about 4 hours away in western North Carolina, and attends a weekly bible study group with some of friends. She had asked them to pray for me, and provided them with periodic updates on my progress. She had apparently mentioned our temporary housing need at some point, because one of her friends commented that her in-laws lived not far from Duke and had a guest house, and she would mention this to them. Recently, we were told that we were welcome to stay at their guest house as needed, at no expense to us.
Often, we get so busy with our daily lives, with our worries and aches and pains, with our relationships with other people, with the many things that occupy our minds, that we miss the many ways that God is working in our lives. The many ways, both large and small, that He is preparing our paths and providing for our needs. He doesn't always do things in quite the way that we might have imagined or preferred, because I have yet to get that fancy sports car that would just thrill my heart. But He is always there, and always watching out for each and every one of us. His blessing are many and His love is so pure and complete. God is so good.
Wednesday, February 13, 2013
Taking it easy
The last week has been restful, and there are still a few more days remaining before my transplant kicks into high gear. The middle of last week was spent getting a chemo treatment to begin conditioning my body for the stem cell collection. All this week I have been receiving daily Neupogen shots to boost the rebuilding of my cell counts, and then next week those new cells will be harvested in a process called Apheresis. To facilitate the Apheresis, next Tuesday I will have a Hickman Port installed, which is a central venous line used to access my blood stream and/or administer chemotherapy, without having to turn the veins in my arms into pin cushions. Then on Wednesday and Thursday they will connect to that Hickman and the collection begins.
Aside from having to make a daily trip to my local Oncologist's office for the shots, which will continue through next Wednesday, I have not had any other cancer related activities going on in my life (which is hard to comprehend). It has just been a restful period to rebuild my strength and enjoy some down time. Periods like that have been hard to come by since last June. The activity levels will be increasing dramatically in the coming weeks, but for now we are making the most of the peace and quiet. As I have said numerous times before, we are taking things one day at a time, and these days aren't at all hard to handle. Gotta run - I think it is time for a nap :-)
Aside from having to make a daily trip to my local Oncologist's office for the shots, which will continue through next Wednesday, I have not had any other cancer related activities going on in my life (which is hard to comprehend). It has just been a restful period to rebuild my strength and enjoy some down time. Periods like that have been hard to come by since last June. The activity levels will be increasing dramatically in the coming weeks, but for now we are making the most of the peace and quiet. As I have said numerous times before, we are taking things one day at a time, and these days aren't at all hard to handle. Gotta run - I think it is time for a nap :-)
Thursday, February 7, 2013
A post from Duke
As I write this post I am sitting in my hospital bed at Duke Medical Center. Yesterday I was admitted to the "9200 unit", which is the section on the 9th floor dedicated exclusively to Bone Marrow Transplant inpatient treatments. All outpatient services are handled at the ABMT clinic about a block away. Over the coming weeks I will become very familiar with both of these locations. Yesterday, after arriving in my room, I met a series of medical staff personnel who were all quite impressive. This is the same TEAM that will be taking care of me when I return in two weeks for my high dose chemotherapy, the heavy duty 'hit', used to wipe out my bone marrow and immune system, as well as any remaining hidden cancer cells.
My current stay began with infusing lots of liquids so that my system would later flush out the chemo and dead cells more effectively. I also received some IV premeds to help prevent some side effects, including nausea. The actual chemo infusion, which was a new drug for me called Cytoxan, only lasted about 2 hours. Apparently it has the potential for some definite side effects, but 18 hours later I am pleased to report that, other that a mild headache, I have experienced none. My track record of avoiding side effects continues to serve me well, although I'm not sure how much longer that will be the case. I'm hoping that history continues to repeat itself, but am prepared for the high dose chemo to be an altogether different experience. People are telling me to be prepared, but then I have also heard that before. We shall see.
Yesterday's chemo will cause my cell counts to drop. Then next week I will receive daily Neupogen shots to help increase the rebuilding of my cell counts, including stem cells. After that, two weeks from yesterday I will spend at least two days as an outpatient at the clinic, having my stem cells collected for later use. That procedure, while perceived by some as a painful process of sucking something out of my bone marrow, is actually accomplished by hooking me up to a piece of equipment that circulates my blood out through a catheter, extracts the stem cells, and then returns the blood to my system. I will be attached to that amazing and miraculous machine, for about 6 hours each day. At the end of each day they actually count the number of cells collected to determine if they have enough. For a very non medical type person, who is learning a lot through the school of hard knocks, I am just blown away by what medical science can do these days.
Enough for now from my hospital bed. We get to return home this afternoon, where I look forward to a good night's sleep, which is something that is hard to come by in a hospital.
My current stay began with infusing lots of liquids so that my system would later flush out the chemo and dead cells more effectively. I also received some IV premeds to help prevent some side effects, including nausea. The actual chemo infusion, which was a new drug for me called Cytoxan, only lasted about 2 hours. Apparently it has the potential for some definite side effects, but 18 hours later I am pleased to report that, other that a mild headache, I have experienced none. My track record of avoiding side effects continues to serve me well, although I'm not sure how much longer that will be the case. I'm hoping that history continues to repeat itself, but am prepared for the high dose chemo to be an altogether different experience. People are telling me to be prepared, but then I have also heard that before. We shall see.
Yesterday's chemo will cause my cell counts to drop. Then next week I will receive daily Neupogen shots to help increase the rebuilding of my cell counts, including stem cells. After that, two weeks from yesterday I will spend at least two days as an outpatient at the clinic, having my stem cells collected for later use. That procedure, while perceived by some as a painful process of sucking something out of my bone marrow, is actually accomplished by hooking me up to a piece of equipment that circulates my blood out through a catheter, extracts the stem cells, and then returns the blood to my system. I will be attached to that amazing and miraculous machine, for about 6 hours each day. At the end of each day they actually count the number of cells collected to determine if they have enough. For a very non medical type person, who is learning a lot through the school of hard knocks, I am just blown away by what medical science can do these days.
Enough for now from my hospital bed. We get to return home this afternoon, where I look forward to a good night's sleep, which is something that is hard to come by in a hospital.
Friday, February 1, 2013
Ready to go.
Yesterday was a very full day. We left home at 7:30 AM and returned back at 7:00 PM. Needless to say we slept well last night. The subject of the day was Bone Marrow Transplant, and while we didn't learn anything new in terms of the overall scope of my transplant, we did assimilate a lot of details that helped fill in some of the holes in our understanding, or answered questions we had on our list. We had a meeting with Dr. Horwitz, where we reviewed various details of the procedures, and then went through several consent forms, which detailed every possible complication that might occur. At least we are now well informed. We attended a New Patients Class, which is required as part of the overall preparation phase. They really got into quite a bit of detail, and gave us some realistic expectations of how things will go at each step along the way. After 2 hours of discussion, and lots of Q&A, our brains were starting to reach the saturation point. Add to that 5 or 6 different tests (ie pulmonary and cardio) and it filled out our day with not much time to spare.
On the way home, Holly and I were discussing what we had heard and seen, and many of the new people we had met. Our conclusion was that we picked up a lot more understanding about the many steps that we will take in the coming days and weeks, and we also had the opportunity to meet several of the people who make up the team that will be taking us on our journey. Looking at my chemotherapy treatments over the last 7 months, during my typical 7 week chemotherapy cycle, I would see the doctors 4 times and receive 6 infusions. The rest of the time was spent at home resting and recuperating. By contrast, the main part of my transplant will be much shorter and much more intense. I have compared it to getting hit with a bat during the chemo, and getting hit by a bus during transplant. During the heart of the procedure, the high dose chemo will destroy most of my white and red blood cells, as well as my marrow and immune system. The harvested stem cells will then be infused (transplanted) back into my body to rescue me, and begin the cellular rebuilding process. During this period of several weeks my body has almost no defenses against any type of infection, and I am extremely vulnerable. It is during this period that I will be watched like a hawk, day and night, for any signs of trouble, so that antibiotics or other measures can be started immediately. So during this period I will be monitored and treated by what can literally be described as a TEAM. 24/7 there will be several medical professionals nearby, with the knowledge and skills to recognize and respond to any signs of trouble. This Team will have my life in their hands, so I had better have a lot of confidence in each and everyone of them. Our visit yesterday went a long way towards beginning to establish that feeling of confidence and trust. The Duke Adult Bone Marrow Transplant Clinic is a very impressive place.
Next Wednesday I will be admitted to the hospital for an overnight stay, and will receive 2 days of chemotherapy, which is described as "priming" my body to produce more stem cells. Several days of growth factor injections (Neupogen) and then the following week they will begin to harvest my stem cells. Up to this point, my transplant was an event that was somewhere off in the future, and reasonably easy to push into the back of my mind. That is no longer the case. It is now time to get this show on the road, and I am ready to go, so as they say "Bring it on". I'm psyched, my TEAM (including my amazing wife) is at the top of their game, and the whistle is ready to blow. All of that, and God Almighty as my coach, and this victory is almost assured. Who needs a Super Bowl. We're going to beat this!!
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| Duke Adult Bone Marrow Transplant Clinic |
On the way home, Holly and I were discussing what we had heard and seen, and many of the new people we had met. Our conclusion was that we picked up a lot more understanding about the many steps that we will take in the coming days and weeks, and we also had the opportunity to meet several of the people who make up the team that will be taking us on our journey. Looking at my chemotherapy treatments over the last 7 months, during my typical 7 week chemotherapy cycle, I would see the doctors 4 times and receive 6 infusions. The rest of the time was spent at home resting and recuperating. By contrast, the main part of my transplant will be much shorter and much more intense. I have compared it to getting hit with a bat during the chemo, and getting hit by a bus during transplant. During the heart of the procedure, the high dose chemo will destroy most of my white and red blood cells, as well as my marrow and immune system. The harvested stem cells will then be infused (transplanted) back into my body to rescue me, and begin the cellular rebuilding process. During this period of several weeks my body has almost no defenses against any type of infection, and I am extremely vulnerable. It is during this period that I will be watched like a hawk, day and night, for any signs of trouble, so that antibiotics or other measures can be started immediately. So during this period I will be monitored and treated by what can literally be described as a TEAM. 24/7 there will be several medical professionals nearby, with the knowledge and skills to recognize and respond to any signs of trouble. This Team will have my life in their hands, so I had better have a lot of confidence in each and everyone of them. Our visit yesterday went a long way towards beginning to establish that feeling of confidence and trust. The Duke Adult Bone Marrow Transplant Clinic is a very impressive place.
Next Wednesday I will be admitted to the hospital for an overnight stay, and will receive 2 days of chemotherapy, which is described as "priming" my body to produce more stem cells. Several days of growth factor injections (Neupogen) and then the following week they will begin to harvest my stem cells. Up to this point, my transplant was an event that was somewhere off in the future, and reasonably easy to push into the back of my mind. That is no longer the case. It is now time to get this show on the road, and I am ready to go, so as they say "Bring it on". I'm psyched, my TEAM (including my amazing wife) is at the top of their game, and the whistle is ready to blow. All of that, and God Almighty as my coach, and this victory is almost assured. Who needs a Super Bowl. We're going to beat this!!
Saturday, January 26, 2013
Phase II
This coming week will begin the second phase of my treatment for Non Hodgkins Peripheral T-Cell Lymphoma. Phase I was a Clinical Trial at Duke Cancer Center, consisting of 24 chemotherapy treatments spread over 28 weeks. That phase was successfully completed last month, and I am now entering Phase II of my treatment. This new phase involves a stem cell transplant (aka bone marrow transplant), also to be performed at Duke. I will be receiving an Autologus Transplant, which means that the transplant will utilize my own stem cells, rather that cells from a donor. One of the main advantages of a "Auto" transplant is that my body will be much less likely to reject my own cells, versus those from another person.
To say that stem cells transplants are complex (and expensive) is an understatement. The Adult Bone Marrow Transplant at Duke began in 1983 and has performed over 2000 transplants. They currently perform about 200 adult transplants each year. Duke also has a Pediatric Bone Marrow Transplant Program, which is separate from the ABMT program. Our daughter was an RN in the pediatric program a few years ago and has been a tremendous resource in helping us understand what lies ahead. The concept is fairly simple and consists of 3 basic steps: 1. Remove a quantity of stem cells from the blood stream and freeze them for later use. 2. Administer high dose chemotherapy which is meant to destroy any remaining cancer cells. Unfortunately, this also destroys the normal cells of the bone marrow and the immune system. 3. Transplant or infuse the stored stem cells back into the bloodstream, where they migrate to the bone marrow. Usually, within a couple of weeks, they begin making new white blood cells, followed by new platelet and new red blood cell production. This rebuilding process takes months, before the patient has reestablished their immune system and is capable of resuming more normal activities.
Next week we head for Duke again, to meet with Dr. Michael Horwitz and his transplant team. A series of tests will be performed to evaluate heart and lung functions, and of course a complete blood workup since it is not possible to enter a cancer related facility without having blood drawn. Then we will attend a class for New Tranplant Patients, designed to cover the very long list of details and duties for patients and caregivers. Finally, a meeting with Dr. Horwitz will review status, answer questions, and hopefully get the green light to proceed.
The stem cell collection or "harvesting" will take place the week of February 18, and the following week I will be admitted to the hospital, for 5 days, to complete the high dose chemotherapy. Then we will move into an apartment near the hospital, which will serve as home base for our daily visits to the transplant clinic for testing and evaluation. So the last part of February and most of March will be spent as residents of Durham. Where better to be located during March madness (an epic basketball event, should you not be aware).
We are beginning to pack boxes with toothpaste, underwear, food, computers, shampoo, dish soap, coffee filters, books to read, and the myriad of other items it takes to live away from home for 6 weeks. We're making a list and checking it twice. We are trying to look at it as an adventure, although I doubt I will be feeling like doing a lot of activities. But it is what it is and we will get through it just fine. In June we will look back and smile, glad that we have moved beyond transplant, and thankful for all our blessings along the way.
In the meantime, keep us in your thoughts and prayers.
To say that stem cells transplants are complex (and expensive) is an understatement. The Adult Bone Marrow Transplant at Duke began in 1983 and has performed over 2000 transplants. They currently perform about 200 adult transplants each year. Duke also has a Pediatric Bone Marrow Transplant Program, which is separate from the ABMT program. Our daughter was an RN in the pediatric program a few years ago and has been a tremendous resource in helping us understand what lies ahead. The concept is fairly simple and consists of 3 basic steps: 1. Remove a quantity of stem cells from the blood stream and freeze them for later use. 2. Administer high dose chemotherapy which is meant to destroy any remaining cancer cells. Unfortunately, this also destroys the normal cells of the bone marrow and the immune system. 3. Transplant or infuse the stored stem cells back into the bloodstream, where they migrate to the bone marrow. Usually, within a couple of weeks, they begin making new white blood cells, followed by new platelet and new red blood cell production. This rebuilding process takes months, before the patient has reestablished their immune system and is capable of resuming more normal activities.
Next week we head for Duke again, to meet with Dr. Michael Horwitz and his transplant team. A series of tests will be performed to evaluate heart and lung functions, and of course a complete blood workup since it is not possible to enter a cancer related facility without having blood drawn. Then we will attend a class for New Tranplant Patients, designed to cover the very long list of details and duties for patients and caregivers. Finally, a meeting with Dr. Horwitz will review status, answer questions, and hopefully get the green light to proceed.
The stem cell collection or "harvesting" will take place the week of February 18, and the following week I will be admitted to the hospital, for 5 days, to complete the high dose chemotherapy. Then we will move into an apartment near the hospital, which will serve as home base for our daily visits to the transplant clinic for testing and evaluation. So the last part of February and most of March will be spent as residents of Durham. Where better to be located during March madness (an epic basketball event, should you not be aware).
We are beginning to pack boxes with toothpaste, underwear, food, computers, shampoo, dish soap, coffee filters, books to read, and the myriad of other items it takes to live away from home for 6 weeks. We're making a list and checking it twice. We are trying to look at it as an adventure, although I doubt I will be feeling like doing a lot of activities. But it is what it is and we will get through it just fine. In June we will look back and smile, glad that we have moved beyond transplant, and thankful for all our blessings along the way.
In the meantime, keep us in your thoughts and prayers.
Tuesday, January 22, 2013
The beard is back.
My last chemo treatment was on December 11, which was almost 6 weeks ago. And all of a sudden my hair has begun to grow again - on the head and on the chin. So I thought I would post a picture of my latest effort to grow a beard again. It is not quite as full as it was before, but with a little more time I think I may be able to get close to where I was before this whole cancer thing decided to crash my party.
I'm not sure how long it will last since I will need to go through a brief period of High Dose Chemotherapy at the beginning of my transplant. I may go bald and beardless again before this is over, but since we are taking everything one day at a time, I'm just going to enjoy the beard on a day by day basis. Just thought I would share my "progress" with everyone :-)
I'm not sure how long it will last since I will need to go through a brief period of High Dose Chemotherapy at the beginning of my transplant. I may go bald and beardless again before this is over, but since we are taking everything one day at a time, I'm just going to enjoy the beard on a day by day basis. Just thought I would share my "progress" with everyone :-)
Saturday, January 19, 2013
Rest of the answer.
Dr. Beaven called again Friday morning to advise that she had talked with Drs. Horwitz and Kelsy, and they have agreed on a course of treatment. It is different than what had been discussed just the day before, but that was before the 'wizards' had been able to confer with each other. The plan is to proceed to bone marrow transplant now, and followup with radiation on the persistent node in my abdomen as soon as possible after the transplant is complete. So off we go.
Exact timing is still uncertain, but I have an appointment with Dr. Horwitz on Thursday, 1/31, to discuss transplant details and have several tests, including breathing, EKG, etc. The transplant should begin shortly thereafter. So it looks like Holly and I will be spending February in Durham, living in an apartment very near the hospital and transplant clinic. We will have a lot of details to take care of in the next couple of weeks, so the time will probably pass quickly. The specific timing and sequence of events will become clearer over the coming days, but we have enough to run with in the meantime.
One thing that we do know for sure in that the Lord will be with us every step of the way. He has demonstrated His might presence in so many ways during the first phase of my treatment, spread over the last 7 months. And if there is one thing that I know for sure, it is that His spirit will be within me, and all around me, every moment of every day. That knowledge is a great source of comfort during a time of uncertainty and anxiety, but that knowledge is also the source of my strength and confidence.
I will post additional information as it becomes available, so keep checking back and staying in touch.
Exact timing is still uncertain, but I have an appointment with Dr. Horwitz on Thursday, 1/31, to discuss transplant details and have several tests, including breathing, EKG, etc. The transplant should begin shortly thereafter. So it looks like Holly and I will be spending February in Durham, living in an apartment very near the hospital and transplant clinic. We will have a lot of details to take care of in the next couple of weeks, so the time will probably pass quickly. The specific timing and sequence of events will become clearer over the coming days, but we have enough to run with in the meantime.
One thing that we do know for sure in that the Lord will be with us every step of the way. He has demonstrated His might presence in so many ways during the first phase of my treatment, spread over the last 7 months. And if there is one thing that I know for sure, it is that His spirit will be within me, and all around me, every moment of every day. That knowledge is a great source of comfort during a time of uncertainty and anxiety, but that knowledge is also the source of my strength and confidence.
I will post additional information as it becomes available, so keep checking back and staying in touch.
Friday, January 18, 2013
Part of the answer.
After several days of waiting (cancer helps teach you patience) Dr. Beaven finally called yesterday with the results of the biopsy done last Friday. As expected, it showed that the persistent lymph node in my abdomen contains Peripheral T-Cell Lymphoma cells. The 6 months of chemotherapy treatments were quite successful at eradicating the diseased cells everywhere else in my body, but for reasons not totally understood, that one lymph node resisted the effects of the chemo. It must now be dealt with in a different manner.
The biopsy was done last Friday and the results had been expected by about Tuesday. But Tuesday came and went, and it took 2 more days before the final determination was available. Apparently the Pathologists had to go back and do some additional tests to confirm their findings. Although we had forgotten, the same thing happened back in June with the initial biopsy. Those results were also delayed for additional testing. Apparently my particular form of cancer is so rare that it is seldom seen in the pathology labs. If it was something they see everyday, the determination would be made more quickly. But when it is rarely ever seen, additional testing, and confirmation by other experts, is needed to be positive. So my advise is, if you are going to get cancer, pick one that is more common and more easily recognizable :-)
While the biopsy results are now known, the various doctors have not yet had a chance to meet and discuss their recommendations. The results of that consultation probably won't be ready until early next week. But based on Dr. Beaven's comments, it would appear that they will want to treat that lymph node with a combination of radiation and chemotherapy. There are two reasons for this combined approach. First, the chemotherapy makes the cancer cells more sensitive to the radiation. So this combined treatment is likely to be more successful than radiotherapy alone. It will also allow the use of lower levels of radiation. Secondly, the whole reason behind the decision to have a bone marrow transplant, is that my particular type of lymphoma has a strong tendency to recur or come back. So the longer the period since the completion of the chemotherapy, and the start of the transplant process, the more opportunity for the cancer to reappear. By combining chemo and radiation therapies, the chemo will help insure that the cancer elsewhere in my body is kept in check.
Assuming that this combined approach is confirmed, the only remaining questions are when it will start and how long it will last. Hopefully we can get started with this second phase of treatment late next week, and earlier discussions with the Radiologist suggest that it could last as long as 4 or 5 weeks. So we may be only a few days away from starting daily trips to Duke for treatment. Does anyone have a helicopter we could borrow for a few weeks?
The biopsy was done last Friday and the results had been expected by about Tuesday. But Tuesday came and went, and it took 2 more days before the final determination was available. Apparently the Pathologists had to go back and do some additional tests to confirm their findings. Although we had forgotten, the same thing happened back in June with the initial biopsy. Those results were also delayed for additional testing. Apparently my particular form of cancer is so rare that it is seldom seen in the pathology labs. If it was something they see everyday, the determination would be made more quickly. But when it is rarely ever seen, additional testing, and confirmation by other experts, is needed to be positive. So my advise is, if you are going to get cancer, pick one that is more common and more easily recognizable :-)
While the biopsy results are now known, the various doctors have not yet had a chance to meet and discuss their recommendations. The results of that consultation probably won't be ready until early next week. But based on Dr. Beaven's comments, it would appear that they will want to treat that lymph node with a combination of radiation and chemotherapy. There are two reasons for this combined approach. First, the chemotherapy makes the cancer cells more sensitive to the radiation. So this combined treatment is likely to be more successful than radiotherapy alone. It will also allow the use of lower levels of radiation. Secondly, the whole reason behind the decision to have a bone marrow transplant, is that my particular type of lymphoma has a strong tendency to recur or come back. So the longer the period since the completion of the chemotherapy, and the start of the transplant process, the more opportunity for the cancer to reappear. By combining chemo and radiation therapies, the chemo will help insure that the cancer elsewhere in my body is kept in check.
Assuming that this combined approach is confirmed, the only remaining questions are when it will start and how long it will last. Hopefully we can get started with this second phase of treatment late next week, and earlier discussions with the Radiologist suggest that it could last as long as 4 or 5 weeks. So we may be only a few days away from starting daily trips to Duke for treatment. Does anyone have a helicopter we could borrow for a few weeks?
Sunday, January 13, 2013
Family tree.
As some of you may recall from some of my earlier posts, I enjoy researching our family trees (both mine and Holly's) and finding out new details about some relatives from times past, or even finding an occasional brand new relative. So since retiring, I have invested a fair amount of time and effort exploring the Davis and Lloyd ancestries. I just love the excitement and mystery of the hunt.
This year, we were fortunate enough to be able to spend Christmas eve with both of our kids and their families, all at the same time. What a blessing that was. "Santa" brought me one particularly large box, beautifully wrapped, and sat it at my feet. Of course your imagination runs wild when you get a large gift, and mine considered several different possibilities. After I could stand it no more, I began to open the present, with some help from a pair of 2 and 4 year olds. Inside I found a handmade blanket, or quilt, 5' by 3 1/2 ' in size. On it was a tree with several limbs, and on the limbs were several leaves. Each of the leaves was personally designed and made by one of my kids, my kids-in-law, or my grand kids. Each leaf contained something very specific to that person, and their name. Near the base of the tree is a heart, with my and Holly's initials. And then on the branches are the ten leaves representing the next two generations.
In the box was a card, which read as follows:
Since the 10 of us aren't able to be with you as much as we would like, we needed something to "fill in" for us. Each leaf and every stitch on this blanket was made while thinking of you....praying that this guilt will keep you warm, comfort you, make you smile, soften your discomfort, warm your heart and remind you of the incredible love that we all have for you....during the next few months and for many, many years to come. We are so blessed to be leaves on your beautiful tree. Jill, Jeff, Ben, Max, Rose, Adam, Annie, Grace, Eliza, Owen.
This year, we were fortunate enough to be able to spend Christmas eve with both of our kids and their families, all at the same time. What a blessing that was. "Santa" brought me one particularly large box, beautifully wrapped, and sat it at my feet. Of course your imagination runs wild when you get a large gift, and mine considered several different possibilities. After I could stand it no more, I began to open the present, with some help from a pair of 2 and 4 year olds. Inside I found a handmade blanket, or quilt, 5' by 3 1/2 ' in size. On it was a tree with several limbs, and on the limbs were several leaves. Each of the leaves was personally designed and made by one of my kids, my kids-in-law, or my grand kids. Each leaf contained something very specific to that person, and their name. Near the base of the tree is a heart, with my and Holly's initials. And then on the branches are the ten leaves representing the next two generations.
In the box was a card, which read as follows:
Since the 10 of us aren't able to be with you as much as we would like, we needed something to "fill in" for us. Each leaf and every stitch on this blanket was made while thinking of you....praying that this guilt will keep you warm, comfort you, make you smile, soften your discomfort, warm your heart and remind you of the incredible love that we all have for you....during the next few months and for many, many years to come. We are so blessed to be leaves on your beautiful tree. Jill, Jeff, Ben, Max, Rose, Adam, Annie, Grace, Eliza, Owen.
Saturday, January 12, 2013
The waiting game.
Last Thursday we met with Dr. Kelsey in Radiation Oncology at Duke. The purpose was to discuss the options for radiation treatment of that remaining persistent node in my abdomen. The good news was that Lymphoma is highly responsive to radiation and he sees no obstacles to being able to treat Mr. Persistent. The bad news was that it could involve up to 4 or 5 weeks of treatment, 5 days per week. I had been thinking more in the range of 2 or 3 weeks so that was a bit of a shocker. But the final period has yet to be finalized.
Then on Friday we headed back to Duke for a CT-Guided Needle Biopsy of Mr. Persistent. The procedure went far more smoothly than I had anticipated. There are times when you want and need to be well read and well informed on various aspects of your treatment. This, however, was one of those instances where I felt that knowing less was probably more advisable. Sometimes ignorance is bliss. But I was still not looking forward to Friday morning. Much to my surprise and delight everything went well and they wound up taking 9 samples for further study.
The pathology report on the biopsy will probably not be available until next Tuesday. At that point Drs. Beaven, Horwitz and Kelsy (the wizards as I call them) will collectively review the results and develop a plan of treatment, most likely involving some level of radiation and then proceeding on to stem cell (bone marrow) transplant. Whatever the result of their review, it will undoubtedly take place over the next 4 or 5 months and have a profound impact on our daily lives during that period. We are prepared for whatever lies ahead and know that, with God's help, and the support of family and friends, we will get through this just fine. Our family motto "We're going to beat this" is still in place and this is just another phase towards that end.
Still, the next several days, until we know more details from the wizards, will be long and filled with much anticipation.
Then on Friday we headed back to Duke for a CT-Guided Needle Biopsy of Mr. Persistent. The procedure went far more smoothly than I had anticipated. There are times when you want and need to be well read and well informed on various aspects of your treatment. This, however, was one of those instances where I felt that knowing less was probably more advisable. Sometimes ignorance is bliss. But I was still not looking forward to Friday morning. Much to my surprise and delight everything went well and they wound up taking 9 samples for further study.
The pathology report on the biopsy will probably not be available until next Tuesday. At that point Drs. Beaven, Horwitz and Kelsy (the wizards as I call them) will collectively review the results and develop a plan of treatment, most likely involving some level of radiation and then proceeding on to stem cell (bone marrow) transplant. Whatever the result of their review, it will undoubtedly take place over the next 4 or 5 months and have a profound impact on our daily lives during that period. We are prepared for whatever lies ahead and know that, with God's help, and the support of family and friends, we will get through this just fine. Our family motto "We're going to beat this" is still in place and this is just another phase towards that end.
Still, the next several days, until we know more details from the wizards, will be long and filled with much anticipation.
Thursday, January 3, 2013
The graduate moves on
We met with Dr. Beaven at Duke yesterday to review the results of the reassessment testing I completed last week. After 28 weeks of chemotherapy, as a participant in a clinical trial for T-cell Lymphoma, I have completed my course of treatment. I have graduated from the program and am ready to move on. There was no formal graduation ceremony, and I will not receive a diploma to hang on the wall, but my body has been cleansed of that horrible disease, and my prognosis is significantly better than it was just 6 months ago. God is so good.
Having successfully completed my initial course of study, I am now ready to move on to graduate school. Dr. Beaven and Dr. Horwitz reviewed my test results and agree that I am ready to begin preparing for my bone marrow transplant. But before we can start that process, a couple of other interim steps are required. I still have that one persistent lymph node in my abdomen that has not been responsive to my chemo treatments. While the doctors do not feel that the presence of this node represents a problem, they would like to see if they can get some additional information about it. So on Friday of next week I am scheduled for a CT-guided biopsy of that lymph node. Hopefully, that will provide a definitive diagnosis, which will allow the doctors to better understand the nature of the cells in that node. The expectation is that the cells are also Lymphoma. Most likely, the biopsy will be followed by 2 or 3 weeks of radiation treatments, to start to knock down that stubborn area.
Following the biopsy/radiation period, I will then begin the transplant process. Back on August 24, 2012, I wrote a more lengthy post containing information about the why's and wherefore's of bone marrow transplants. You may wish to go back in the Blog Archives, on the right of the screen, to read that post. Certainly I will be posting more about it in the coming weeks, but we have a few things to complete before that transplant comes into focus.
Overall, we are thrilled with the progress that has taken place since my diagnosis on June 6, 2012. The rare and aggressive cancer that was discovered almost by accident (a.k.a. God's divine intervention) has been essentially wiped out. I can think of many pursuits, other than a bone marrow transplant, that I would prefer to undertake in the months ahead. But for someone who wasn't sure he would even be alive to see the year 2013, having graduated from Clinical Trial University, and now pursuing an advanced degree in Total Disease Eradication is pretty darn exciting. And my goal is to graduate summa cum laude (with highest honor).
Having successfully completed my initial course of study, I am now ready to move on to graduate school. Dr. Beaven and Dr. Horwitz reviewed my test results and agree that I am ready to begin preparing for my bone marrow transplant. But before we can start that process, a couple of other interim steps are required. I still have that one persistent lymph node in my abdomen that has not been responsive to my chemo treatments. While the doctors do not feel that the presence of this node represents a problem, they would like to see if they can get some additional information about it. So on Friday of next week I am scheduled for a CT-guided biopsy of that lymph node. Hopefully, that will provide a definitive diagnosis, which will allow the doctors to better understand the nature of the cells in that node. The expectation is that the cells are also Lymphoma. Most likely, the biopsy will be followed by 2 or 3 weeks of radiation treatments, to start to knock down that stubborn area.
Following the biopsy/radiation period, I will then begin the transplant process. Back on August 24, 2012, I wrote a more lengthy post containing information about the why's and wherefore's of bone marrow transplants. You may wish to go back in the Blog Archives, on the right of the screen, to read that post. Certainly I will be posting more about it in the coming weeks, but we have a few things to complete before that transplant comes into focus.
Overall, we are thrilled with the progress that has taken place since my diagnosis on June 6, 2012. The rare and aggressive cancer that was discovered almost by accident (a.k.a. God's divine intervention) has been essentially wiped out. I can think of many pursuits, other than a bone marrow transplant, that I would prefer to undertake in the months ahead. But for someone who wasn't sure he would even be alive to see the year 2013, having graduated from Clinical Trial University, and now pursuing an advanced degree in Total Disease Eradication is pretty darn exciting. And my goal is to graduate summa cum laude (with highest honor).
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