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
Friday, March 29, 2013
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.
Subscribe to:
Posts (Atom)