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.
Saturday, October 12, 2013
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.
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