My last experience with Non Hodgkins T-Cell Lymphoma, which started about 18 months ago, involved almost no symptoms of the disease itself, and very minimal side effects from the chemotherapy treatments. The only real evidence that I had to deal with on an ongoing basis was fatigue. My mobility was very normal and my pain or discomfort was not an issue.
This time, however, things are very different. The primary disease location is a tumor on my spine, in my lower back, and the swelling from the tumor is exerting pressure on my spine and the nerves leading to my right leg. The result is extreme pain in my lower back and right leg, which has significantly impacted the movement and use of my leg. I quickly reached the point where my entire day was spent in bed, dreading the need to move at all (including trips to the bathroom), and relying on pain pills to achieve any level of comfort.
Fortunately, my daily radiation treatments quickly began to impact the tumor, reducing the swelling and in turn the pressure. Over the past two weeks I have progressed from being bedridden, to a situation where I am now able to move around without undo pain or discomfort using a cane, get a decent night's sleep, and can see that there is light at the end of the tunnel. The radiation treatments end next week and hopefully will have pretty much eliminated the tumor. Our visit to Dr. Beaven at Duke will determine the next treatment phase.
During all of this, moving around silently in the background has been a force of nature that is a combination of mind reader, army medic, weight lifter, master chef and Florence Nightingale lookalike. It is actually my wife Holly, assuming the many roles associated with being a care giver. It is not a burden that she went looking for, but rather one that was thrust upon her. She could quite easily find things to fill her day, other than getting me a glass of water, helping me pull on my socks each morning, and driving me to the hospital every day. All the while she is acting as my motivational cheerleader and fitness instructor.
I don't know what I would do without her by my side. She happily accepts whatever task arises, no matter the hour day or night. I am the one who gets all the cards in the mail. At church this morning I was the one that everyone came to see and inquire as to my status. Yet there she was, quietly assessing my stamina, and suggesting that maybe it would be wiser to return home rather than stay for Sunday school.
I am so very fortunate and so very blessed in so many ways. And right at the top of the list is the fact that I am married to an absolute angel.
Sunday, February 2, 2014
Wednesday, January 29, 2014
Heading back to Duke.
Since my last post, we have continued with the radiation treatments and gleaned some additional information regarding the tumor on my spine, which seems to be the primary location where the cancer has taken up residence. My radiation will consist of a total of 10 treatments, 6 of which have been completed to date. The tumor was about 2" in size, and that added mass in my spinal area was exerting pressure on my spinal cord and the spinal nerve going to my right hip and leg. The result was some rather severe pain in my back, hip and leg areas. But the radiation quickly began to exact its toll on the tumor and the resulting pain has diminished quite a bit. That, coupled with an ever-present bottle of oxycodone, have allowed me to stay ahead of the pain most of the time. The final radiation treatment is next Monday, and by then we are hoping that the tumor area is largely resolved.
On Thursday of next week we begin a new round of trips to and from the Duke Cancer Center. We meet with Dr. Beaven to review the biopsy results and discuss possible options for clinical trial treatments in the coming weeks/months. Since Peripheral T-Cell Lymphoma is such a rare type of cancer, the oncology community has not yet been able to develop a standard treatment protocol that yields a satisfactory level of resulting outcome (that is a nice way of saying the survival rate is not at all good). That is why it is important to be receiving treatment at one of the highly regarded cancer research hospitals, where they are deeply involved in, and aware of, all of the research being done worldwide. Hopefully Dr. Beaven will have been able to identify one or more options for our consideration.
Needless to say we are anxious to find out what lies ahead. And whatever that may be, we know that our Lord and Savior, Our Loving Heavenly Father, will be with us every step along the way. We ask for your continued prayers as our latest journey unfolds.
On Thursday of next week we begin a new round of trips to and from the Duke Cancer Center. We meet with Dr. Beaven to review the biopsy results and discuss possible options for clinical trial treatments in the coming weeks/months. Since Peripheral T-Cell Lymphoma is such a rare type of cancer, the oncology community has not yet been able to develop a standard treatment protocol that yields a satisfactory level of resulting outcome (that is a nice way of saying the survival rate is not at all good). That is why it is important to be receiving treatment at one of the highly regarded cancer research hospitals, where they are deeply involved in, and aware of, all of the research being done worldwide. Hopefully Dr. Beaven will have been able to identify one or more options for our consideration.
Needless to say we are anxious to find out what lies ahead. And whatever that may be, we know that our Lord and Savior, Our Loving Heavenly Father, will be with us every step along the way. We ask for your continued prayers as our latest journey unfolds.
Wednesday, January 22, 2014
How quickly things can change.
We were fortunate enough to be able to spend the holidays with our families; Christmas with our daughter Jill and New Years with our son Adam. We returned home a few days into 2014 and I was having problems with a sore back. So I had an MRI done to see if we could determine the cause, and we were very surprised to find a 2" tumor on my spine in the L3/L4 region.
In a quick series of tests and diagnostic sessions, it has been determined that my cancer has returned and I have already started radiation therapy to treat the tumor area. The final biopsy results are not yet available, but we already know it is cancer, the question now is what specific type. A PET scan showed new areas of activity, although they appear to be small in number and size (except for the tumor).
We are scheduled for an early February appointment with Dr Beaven at Duke to discuss longer range options. My guess is that when we finish the radiation in two weeks, and the tumor has been destroyed or largely resolved, we will begin some type of systemic chemotherapy treatment at Duke as part of a clinical trial. That will be the focus of our discussions in early February.
Last summer and fall, after followup visits and tests at Duke, I was determined to be in complete remission and cancer free. By the end of 2013 it had returned, which is an example of how aggressive and nasty, Non Hodgkins Peripheral T-Cell Lymphoma can be. Everything about it is mean. I would be lying if I said I was not disappointed to hear it was back. But I was also well aware that recurrence was a definite possibility. My first experience with NHPTCL resulted in a hard fought and victorious outcome. But it has now returned for round two, and I fully expect to achieve another victory. I am prepared to do battle with this monster as often as necessary, until a cure is finally found and NHPTCL is an extinct disease.
Much information is still to be collected and analyzed, so we will be making numerous trips to Duke in the coming weeks and months. Please keep us in your prayers and we promise to keep you posted on our progress. Those of you who followed our earlier experience with NHPTCL know that we place our total trust and faith in the Lord God Almighty. And His loving faithfulness during our earlier struggles have only strengthened our belief that He will be with us during our upcoming time of need.
In a quick series of tests and diagnostic sessions, it has been determined that my cancer has returned and I have already started radiation therapy to treat the tumor area. The final biopsy results are not yet available, but we already know it is cancer, the question now is what specific type. A PET scan showed new areas of activity, although they appear to be small in number and size (except for the tumor).
We are scheduled for an early February appointment with Dr Beaven at Duke to discuss longer range options. My guess is that when we finish the radiation in two weeks, and the tumor has been destroyed or largely resolved, we will begin some type of systemic chemotherapy treatment at Duke as part of a clinical trial. That will be the focus of our discussions in early February.
Last summer and fall, after followup visits and tests at Duke, I was determined to be in complete remission and cancer free. By the end of 2013 it had returned, which is an example of how aggressive and nasty, Non Hodgkins Peripheral T-Cell Lymphoma can be. Everything about it is mean. I would be lying if I said I was not disappointed to hear it was back. But I was also well aware that recurrence was a definite possibility. My first experience with NHPTCL resulted in a hard fought and victorious outcome. But it has now returned for round two, and I fully expect to achieve another victory. I am prepared to do battle with this monster as often as necessary, until a cure is finally found and NHPTCL is an extinct disease.
Much information is still to be collected and analyzed, so we will be making numerous trips to Duke in the coming weeks and months. Please keep us in your prayers and we promise to keep you posted on our progress. Those of you who followed our earlier experience with NHPTCL know that we place our total trust and faith in the Lord God Almighty. And His loving faithfulness during our earlier struggles have only strengthened our belief that He will be with us during our upcoming time of need.
Tuesday, November 26, 2013
Continuing progress
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.
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.
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.
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