My usual practice is to get complete bloodwork done in advance of my quarterly follow-up visits to Dr. Hema. In that way, the details are available to the doctor at the time of my visit; they can be discussed at the visit, rather than speculate and then get a call from a nurse a couple of days later. My blood was taken at my local doctor's lab on Monday and the results faxed to Dr. Hema.
Nurse Kim just telephoned with excitement in her voice. She reported that the numbers are in and they're very good. The M-spike is now 0.21, down from 0.30 in April and 0.28 in October. The hemaglobin reading is now 12.3 against a normal range beginning at 13. These numbers are a further improvement and support my belief that my overall health is excellent.
I can hardly wait to see Dr. Hema on Tuesday and crow about my great progress and, of course, thank him for his skill and dedication. What a wonderful way to start the new year.
Woo hoo, indeed!!!
Thursday, December 30, 2010
Tuesday, November 16, 2010
Wednesday, October 6, 2010
Follow up with Dr. Hema
Yesterday, I had a quarterly follow up visit with Dr. Hema. My blood tests were performed by Dr. Primary's office, so were available to Dr. Hema at my visit.
The two biggest indicators of the effects of lymphoma are IgM and M-spike. For reference, in April, they were 359 and 0.3, respectively. M-spike has been as high as 3.16. In a normal, lymphoma-free person, it is zero.
Yesterday's result was IgM of 284, teetering very close to the normal range of 60-263. That's a very nice improvement from 359 in April!
My M-spike number is 0.28. Now, I don't know if there is any real statistically significant difference between 0.3 and 0.28, but it sure isn't higher. All of this, according to Dr. Hema, indicates that my 90% remission is holding steady. My numbers may be steady, or, at best, very slightly better, but the good news is that they are certainly no worse.
I see Dr. Hema again in three months.
Dr. Hema's parting comment was to go enjoy my life. I intend to follow his orders strictly!
The two biggest indicators of the effects of lymphoma are IgM and M-spike. For reference, in April, they were 359 and 0.3, respectively. M-spike has been as high as 3.16. In a normal, lymphoma-free person, it is zero.
Yesterday's result was IgM of 284, teetering very close to the normal range of 60-263. That's a very nice improvement from 359 in April!
My M-spike number is 0.28. Now, I don't know if there is any real statistically significant difference between 0.3 and 0.28, but it sure isn't higher. All of this, according to Dr. Hema, indicates that my 90% remission is holding steady. My numbers may be steady, or, at best, very slightly better, but the good news is that they are certainly no worse.
I see Dr. Hema again in three months.
Dr. Hema's parting comment was to go enjoy my life. I intend to follow his orders strictly!
Friday, October 1, 2010
A new development
At my last annual physical, my tests showed somewhat elevated triglycerides. Dr. Primary recommended I treat it with Omega-3 fish oil and return for a follow-up in six months. I had the follow-up on Wednesday. Dr. Primary reports that my triglycerides are even higher. He asked me to discontinue Omega-3 fish oil and prescribed Tricor, a treatment for elevated triglycerides.
A search of the internet shows that elevated triglycerides, lymphoma and chemotherapy are often linked.
I think my cardiologist knew something was happening; at my last visit, he asked that I provide my blood test results at my next visit. I asked Dr. Primary to send them along to Dr. Cardio along with any observations.
I will discuss this with Dr. Hema when I see him October 5. I shall also moderate my gluttony and, especially, my appetite for greasy, fatty, yummy southern breakfasts!
Yeah, I know, but this time I really mean it.
A search of the internet shows that elevated triglycerides, lymphoma and chemotherapy are often linked.
I think my cardiologist knew something was happening; at my last visit, he asked that I provide my blood test results at my next visit. I asked Dr. Primary to send them along to Dr. Cardio along with any observations.
I will discuss this with Dr. Hema when I see him October 5. I shall also moderate my gluttony and, especially, my appetite for greasy, fatty, yummy southern breakfasts!
Yeah, I know, but this time I really mean it.
Wednesday, September 8, 2010
I feel good!
...like I knew that I would.
My health continues to be very good. I have energy and a general sense of well-being. I sleep very well and I look forward to my daily two-mile walk and photo expedition.
My adorable wife and I had planned for a short cruise this autumn, however, the cruise we wanted is booked for 2010 and the waiting list is long. Instead, we will take a trip to Cape Cod to see friends and family.
I looked back at photos of me on a trip we took about a year ago and I looked, frankly, ghastly. If I may say so, I look immensely more healthy today. A year ago, my weight was 157; pretty puny for a guy 6' tall! Today, I am a slightly soft 183.
I see the wonderful people at Dr. Hema's office on October 5. I almost feel like I can hardly wait to show off my great blood test numbers!
Thank you again for all your prayers and well-wishes. I am very grateful for your caring concern.
Monday, July 12, 2010
Finally! A good report.
After not hearing from Dr. Hema's office neither last Wednesday nor Thursday, I telephoned for Nurse K. She explained that Dr. Hema was out of town and she was therefor not yet asked to report the result. We both realize, nonetheless, that the usual procedure is to call the patient and report the numbers.
She reported the M-spike number is now 0.3, which is, she said, "very good." That is actually lower, just a bit, than the previous report, which was 0.35. Needless to say, I am very happy that my number is so good. It appears that, so far, my 90% remission is holding.
My general health and energy certainly supports this. I feel very fine. My adorable wife and I expect to enjoy two vacations yet this year. I hope our New England friends will warm up their lobster pots. We are going to see them very soon!
She reported the M-spike number is now 0.3, which is, she said, "very good." That is actually lower, just a bit, than the previous report, which was 0.35. Needless to say, I am very happy that my number is so good. It appears that, so far, my 90% remission is holding.
My general health and energy certainly supports this. I feel very fine. My adorable wife and I expect to enjoy two vacations yet this year. I hope our New England friends will warm up their lobster pots. We are going to see them very soon!
Tuesday, July 6, 2010
Follow-up visit to Dr. Hema
It was off to Big City today for a regularly scheduled follow-up visit to Dr. Hema. After my weight, blood pressure and other vital signs were taken, blood was drawn for testing. Dr. Hema reported that my hemoglobin and platelet counts showed slight improvements, but improvements nonetheless. He confirmed that the most important indicator of my health, the M-spike number, would not be available until Wednesday or Thursday.
We discussed that curing lymphoma is unlikely at this time, given the state of medical science. However, remission, leading to a normal quality of life, is realistic. In his and my opinion, we have achieved it.
Of course, the question remains: how long will it last. We hope, long enough to enjoy a normal life expectancy or longer, even if it takes a few more rounds of treatments over a span of many years.
I will report the M-spike report as soon as I have it.
Thank you again for your well wishes. They buoy me up!
We discussed that curing lymphoma is unlikely at this time, given the state of medical science. However, remission, leading to a normal quality of life, is realistic. In his and my opinion, we have achieved it.
Of course, the question remains: how long will it last. We hope, long enough to enjoy a normal life expectancy or longer, even if it takes a few more rounds of treatments over a span of many years.
I will report the M-spike report as soon as I have it.
Thank you again for your well wishes. They buoy me up!
Wednesday, June 30, 2010
Testing next week
Next week I go back to Dr. Hema for a regularly scheduled visit and blood tests. I have been feeling so well, so full of energy and so optimistic about my life, that I feel like I can hardly wait to get to the doctor's office to show off my great numbers! Of course, I have no idea what my numbers really are, but, of course, I hope they are great. I will certainly report the news as soon as I learn it.
My friends and neighbors all seem to have the same remarks, "Wow, you look great." I must admit that I have compared photographs taken of me a year ago to the man who stares back at me in the mirror today and the change is remarkable. Even I think I look much better.
Cross your fingers, kids! Here we go to get some great numbers!
My friends and neighbors all seem to have the same remarks, "Wow, you look great." I must admit that I have compared photographs taken of me a year ago to the man who stares back at me in the mirror today and the change is remarkable. Even I think I look much better.
Cross your fingers, kids! Here we go to get some great numbers!
Tuesday, June 1, 2010
Good health is a blessing...
...and a bigger blessing.
My health has greatly improved since chemotherapy has killed 90% or so of the lymphoma cells in my body. I look better, my skin conditions have largely disappeared, I have energy and I am motivated to get up and go. I am very grateful for this improvement. At this time of life, when I have the time and a few dollars to do things and go places, it is wonderful to have good health that gives me the energy to do so.
Previously, when my body was struggling to fight lymphoma, I could eat whatever I wanted and whenever I wanted and not gain weight. Likewise, my cholesterol number was always nice and low. I could exercise a little, a lot or not at all with no ill effect.
Now that my health has been restored to normal, that is, the same as normal humans, my reaction to too many calories and too little exercise is also normal: weight gain. I seem to be plateaued at about 12-14 pounds above my ideal weight.
I sure do miss those 3,000 calorie breakfasts!
My health has greatly improved since chemotherapy has killed 90% or so of the lymphoma cells in my body. I look better, my skin conditions have largely disappeared, I have energy and I am motivated to get up and go. I am very grateful for this improvement. At this time of life, when I have the time and a few dollars to do things and go places, it is wonderful to have good health that gives me the energy to do so.
Previously, when my body was struggling to fight lymphoma, I could eat whatever I wanted and whenever I wanted and not gain weight. Likewise, my cholesterol number was always nice and low. I could exercise a little, a lot or not at all with no ill effect.
Now that my health has been restored to normal, that is, the same as normal humans, my reaction to too many calories and too little exercise is also normal: weight gain. I seem to be plateaued at about 12-14 pounds above my ideal weight.
I sure do miss those 3,000 calorie breakfasts!
Friday, May 14, 2010
A visit to Dr. Cardio
Last Tuesday, I visited my cardiologist for my annual check-up. As some of you may know, I have suffered from cardiac arrhythmia for many years. Many years ago, I dragged myself to the doctor's office and I was told my resting pulse was 220 bpm. I asked the doctor if you could die from it and he responded, "Usually, you do." A few hospital visits and several experiments with various medications and I am now fine.
I had a nuclear stress test which took about 2 1/2 hours. I then saw the cardiologist and he reviewed my results. After about ten minutes with him, he said, "You are doing great; see you in a year."
It is great to know that the rest of my system is working well. I am looking forward to a long and happy life. I hope that God and my M-spike numbers concur.
Wow, I sure miss those pecan waffles! Today's weight 182.5.
I had a nuclear stress test which took about 2 1/2 hours. I then saw the cardiologist and he reviewed my results. After about ten minutes with him, he said, "You are doing great; see you in a year."
It is great to know that the rest of my system is working well. I am looking forward to a long and happy life. I hope that God and my M-spike numbers concur.
Wow, I sure miss those pecan waffles! Today's weight 182.5.
Monday, May 3, 2010
A visit to Dr. Hema
We traveled to Big City today to learn the results of the CT scan and Dr. Hema's interpretation of the blood tests. Dr. Hema said that since my M-spike number had been as high as 3.16 and was now 0.35, that I had achieved about 90% of remission. He said that, while this is not complete remission, it is a very substantial success. He further said that if our goal is the resumption of good health and the enjoyment of life, we have achieved our goal. I am feeling very well and, according to my friends and relatives, look very good. I have energy and look forward to enjoying travel and leisure.
If I were to insist on further treatments to try to squeeze out every last particle of lymphoma and reduce my M-spike reading to 0.000, then I would have to undergo further infusions with unknown side-effects and be tethered to Big City. That, in my opinion and the opinion of my adorable wife, is a reduction in quality of life. Such extraordinary efforts might not even be effective. I shall therefor enjoy the renewed health that I have and be very grateful for the 90% remission that I have, rather that regret the 10% I lack.
He said the CT scan shows a very slight remaining area of lymphoma cells in my abdomen. He said it was slight before we started and is very slight now.
We will be seeing Dr. Hema in two months and probably every three months thereafter. In the meantime, we shall try to enjoy life to the fullest!
I continue to be alarmed by my weight. When I first saw Dr. Hema, it was 165. It got down to 157 in the darkest days of rituxan. Today's weight was 183! I am reducing my calorie count and I am increasing my exercise. Boy, do I miss those pecan waffles!
If I were to insist on further treatments to try to squeeze out every last particle of lymphoma and reduce my M-spike reading to 0.000, then I would have to undergo further infusions with unknown side-effects and be tethered to Big City. That, in my opinion and the opinion of my adorable wife, is a reduction in quality of life. Such extraordinary efforts might not even be effective. I shall therefor enjoy the renewed health that I have and be very grateful for the 90% remission that I have, rather that regret the 10% I lack.
He said the CT scan shows a very slight remaining area of lymphoma cells in my abdomen. He said it was slight before we started and is very slight now.
We will be seeing Dr. Hema in two months and probably every three months thereafter. In the meantime, we shall try to enjoy life to the fullest!
I continue to be alarmed by my weight. When I first saw Dr. Hema, it was 165. It got down to 157 in the darkest days of rituxan. Today's weight was 183! I am reducing my calorie count and I am increasing my exercise. Boy, do I miss those pecan waffles!
An open letter to Dr. Hema
May 3, 2010
Dr. Hema
and the entire staff
Thank you all for the wonderful treatment I have received for my lymphoma. My treatments have, at times, been very difficult for us all. Throughout all of it, you and the whole staff have treated me with the utmost professionalism, compassion and a bit of humor. I firmly believe that if we didn't find a way to chuckle through all of this, that the ordeal would be too sad. You and your staff have achieved, in my opinion, just the right touch of humor to make a tough process tolerable.
It is tempting to single out a few members of your staff that I feel did an extraordinary job. However, I believe that every member of the staff did their utmost to see that my care was given in a very professional manner. To the contrary, it would be impossible to single out a single person whose care was less than excellent.
I am very grateful to have such a skilled team working very hard to make my life healthier, happier and longer.
Please pass my thanks to each and every member of your staff.
I know that the Big City Medical system is concerned about customer satisfaction, as they should be. Please feel free to pass my comments on to anyone in the system.
Thank you again.
Bill-in-SC
Dr. Hema
and the entire staff
Thank you all for the wonderful treatment I have received for my lymphoma. My treatments have, at times, been very difficult for us all. Throughout all of it, you and the whole staff have treated me with the utmost professionalism, compassion and a bit of humor. I firmly believe that if we didn't find a way to chuckle through all of this, that the ordeal would be too sad. You and your staff have achieved, in my opinion, just the right touch of humor to make a tough process tolerable.
It is tempting to single out a few members of your staff that I feel did an extraordinary job. However, I believe that every member of the staff did their utmost to see that my care was given in a very professional manner. To the contrary, it would be impossible to single out a single person whose care was less than excellent.
I am very grateful to have such a skilled team working very hard to make my life healthier, happier and longer.
Please pass my thanks to each and every member of your staff.
I know that the Big City Medical system is concerned about customer satisfaction, as they should be. Please feel free to pass my comments on to anyone in the system.
Thank you again.
Bill-in-SC
Thursday, April 29, 2010
Preliminary results are in
Nurse K at Dr. Hema's office just called with my blood test results and they are great! The M-spike reading is 0.3 which she described as normal.
Pardon me, I just have to repeat that again: M-spike is normal. I love the sound of that! M-spike...normal. Normal.
She also said the IgM number is now 359, which is getting close to the normal range of 62 - 263. It has been a high as a sobering 5,000!
M-spike and IgM numbers that are not just high but sky-high are the primary indicators of lymphoplasmacytic lymphoma. To see them recede to normal or, at least near normal, is great news!
As my friend N said, hey, I might just beat this thing!
I still have to meet with Dr. Hema on Monday to discuss not only these results, but also the results of the CT scan. I am no doctor, but I imagine the good news will continue. Of course, I am realistic, there is no known cure for lymphoma. It can be brought to remission, but, if one lives long enough, it always returns. It may return in a year or five years or ten years. It may be brought to remission with a further round of treatments, giving another short or long period of normal life; or it may not. Every case is unique.
I am very happy with the news I have received so far! Thank you all for your well wishes and prayers.
Pardon me, I just have to repeat that again: M-spike is normal. I love the sound of that! M-spike...normal. Normal.
She also said the IgM number is now 359, which is getting close to the normal range of 62 - 263. It has been a high as a sobering 5,000!
M-spike and IgM numbers that are not just high but sky-high are the primary indicators of lymphoplasmacytic lymphoma. To see them recede to normal or, at least near normal, is great news!
As my friend N said, hey, I might just beat this thing!
I still have to meet with Dr. Hema on Monday to discuss not only these results, but also the results of the CT scan. I am no doctor, but I imagine the good news will continue. Of course, I am realistic, there is no known cure for lymphoma. It can be brought to remission, but, if one lives long enough, it always returns. It may return in a year or five years or ten years. It may be brought to remission with a further round of treatments, giving another short or long period of normal life; or it may not. Every case is unique.
I am very happy with the news I have received so far! Thank you all for your well wishes and prayers.
Monday, April 26, 2010
Blood test and CT scan
This morning, I made yet another trip to my local physician's office for blood tests. This test includes the IgM and M-spike tests which are a pretty clear indication that something, such as lymphoma, is amiss. The other clear indicator is looking at the result a CT scan with and without contrast and I also had that today.
I will then see Dr. Hema on May 3 to learn the result. Of course, I hope to hear that my numbers are perfect and that I am in remission. However, I am fully aware that every case is unique and I am prepared for any result. Nevertheless, please join me in crossing our fingers and toes and let's hope and pray for a great result.
I will then see Dr. Hema on May 3 to learn the result. Of course, I hope to hear that my numbers are perfect and that I am in remission. However, I am fully aware that every case is unique and I am prepared for any result. Nevertheless, please join me in crossing our fingers and toes and let's hope and pray for a great result.
Thursday, April 15, 2010
Blood test results
On Monday, I went to my local doctor for regularly scheduled tests. They are taken here and faxed to Dr.Hema. His nurse called yesterday afternoon to report that the hemoglobin, hematocrit and platelet counts were, in Dr. Hema's words, low but safe.
I had been told previously by Dr. Hema that an expected result was that, as the fludarabine killed the lymphoma-bearing B cells, these factors would be lowered in response. So, hearing 'low but safe' is an entirely expected result.
I feel very well; I have more energy than I had a few months ago and I feel that my color is greatly improved. As I have reported before, my weight is certainly improved; perhaps a bit too much! Today's weight was 182.
Gosh, I sure miss the pecan waffles!
On April 26th, I go for the next round of blood tests and a CT scan. We will have more information to gauge my hopeful recovery then.
A very happy birthday to my adorable wife who has been my pillar of strength and encouragement throughout all of this. I love you, dear!
I had been told previously by Dr. Hema that an expected result was that, as the fludarabine killed the lymphoma-bearing B cells, these factors would be lowered in response. So, hearing 'low but safe' is an entirely expected result.
I feel very well; I have more energy than I had a few months ago and I feel that my color is greatly improved. As I have reported before, my weight is certainly improved; perhaps a bit too much! Today's weight was 182.
Gosh, I sure miss the pecan waffles!
On April 26th, I go for the next round of blood tests and a CT scan. We will have more information to gauge my hopeful recovery then.
A very happy birthday to my adorable wife who has been my pillar of strength and encouragement throughout all of this. I love you, dear!
Thursday, April 1, 2010
Woo hoo!
We just finished the last infusion of my six-month long fludarabine regimen!
I said, "we." My adorable wife went along for every treatment, sat in the room to comfort me and has every bit as much treatment room mileage as me. She was with me for the highs and lows and never failed to smile and be as supportive and as helpful as anyone could ever expect. I am glad this is over for her, and for me. I am a very lucky man to have her in my life.
All of the staff at Dr. Hema's pierce-a-torium were so nice, so kind and so understanding. My special thanks and appreciation go to Nurse P and Nurse B. Dr. Hema is very lucky to have a staff of professionals who are also great at getting a smile or a chuckle out of most every patient. I am very lucky to have this great team of people working very hard to make my life longer, healthier and happier.
As we left to head for a late lunch or early dinner, I was struck by the day I was given. It was a glorious day with newly blooming dogwoods, cherry trees, wisteria, tulips and pansies. The temperature was perfect and the sky was cobalt blue, so we went to My Big Fat Pricey Mall and had a wonderful meal sitting outdoors. Life is good!
Next are blood tests two and four weeks from now and a CT scan. We are quite confident that we may hear the R-word in there soon.
I said, "we." My adorable wife went along for every treatment, sat in the room to comfort me and has every bit as much treatment room mileage as me. She was with me for the highs and lows and never failed to smile and be as supportive and as helpful as anyone could ever expect. I am glad this is over for her, and for me. I am a very lucky man to have her in my life.
All of the staff at Dr. Hema's pierce-a-torium were so nice, so kind and so understanding. My special thanks and appreciation go to Nurse P and Nurse B. Dr. Hema is very lucky to have a staff of professionals who are also great at getting a smile or a chuckle out of most every patient. I am very lucky to have this great team of people working very hard to make my life longer, healthier and happier.
As we left to head for a late lunch or early dinner, I was struck by the day I was given. It was a glorious day with newly blooming dogwoods, cherry trees, wisteria, tulips and pansies. The temperature was perfect and the sky was cobalt blue, so we went to My Big Fat Pricey Mall and had a wonderful meal sitting outdoors. Life is good!
Next are blood tests two and four weeks from now and a CT scan. We are quite confident that we may hear the R-word in there soon.
Wednesday, March 31, 2010
An amusing day...
...if that's possible in an oncology treatment center.
Each visit, it seems, brings us a new friend or a new sight or an interesting occurance. We always see the sad cases; those people who are very ill, look weak and are wearing scarves because, presumably, their hair has been lost due to chemotherapy. We see those who are all too young who will be fighting cancer for the majority of their, maybe short, life. We also see, thankfully, a lot of people who look perfectly normal and who you would never suspect were ill if you encountered them outside.
We encounter talkers, who talk incessantly, telling you every detail of their disease progression, whether you are listening or not. Quickly, we recognize who they are and sit in a recliner far away.
Yesterday, we saw a recliner occupied by an unmoving shape completely covered, except for shoes, by white blankets. The shape didn't seem to move, even to breathe. My adorable wife looked at me and half-whispered, "You don't suppose he's d...?" I replied, "I dunno."
After about an hour, the shape threw off the blankets, a man emerged and dragged his IV pump along to the restroom. He returned and replaced the blankets, even over his head and face, although now he was sitting up. He sat immobile for another 30 minutes. His cell phone rang and he rustled about under the blankets and said, "Yeah?...mm hmm...K." There was more rustling under the blankets and he then remained motionless, completely covered, except for his shoes. He was still there when I finished and left.
Every person has their own way to get through this ordeal; his was just a bit more unusual than most!
On Thursday, I will be done! I will celebrate with a glass of wine and a steak and a trip to see my beloved bother and sister! Here I come!
Each visit, it seems, brings us a new friend or a new sight or an interesting occurance. We always see the sad cases; those people who are very ill, look weak and are wearing scarves because, presumably, their hair has been lost due to chemotherapy. We see those who are all too young who will be fighting cancer for the majority of their, maybe short, life. We also see, thankfully, a lot of people who look perfectly normal and who you would never suspect were ill if you encountered them outside.
We encounter talkers, who talk incessantly, telling you every detail of their disease progression, whether you are listening or not. Quickly, we recognize who they are and sit in a recliner far away.
Yesterday, we saw a recliner occupied by an unmoving shape completely covered, except for shoes, by white blankets. The shape didn't seem to move, even to breathe. My adorable wife looked at me and half-whispered, "You don't suppose he's d...?" I replied, "I dunno."
After about an hour, the shape threw off the blankets, a man emerged and dragged his IV pump along to the restroom. He returned and replaced the blankets, even over his head and face, although now he was sitting up. He sat immobile for another 30 minutes. His cell phone rang and he rustled about under the blankets and said, "Yeah?...mm hmm...K." There was more rustling under the blankets and he then remained motionless, completely covered, except for his shoes. He was still there when I finished and left.
Every person has their own way to get through this ordeal; his was just a bit more unusual than most!
On Thursday, I will be done! I will celebrate with a glass of wine and a steak and a trip to see my beloved bother and sister! Here I come!
Monday, March 29, 2010
Back in Big City
The sixth and final round of fludarabine treatments started today. It will continue through Thursday. The first stop, after blood is taken, is to visit with Dr. Hema. He examined my blood test results and again reported that the fludarabine is killing the B-cells that carry lymphoma and is dragging down my hemoglobin and platelet counts. He said it was an entirely expected and normal process. He said that, after treatment ends and my system builds new B-cells, my numbers will return to normal.
My infusion treatment started with a hitch. Nurse P had trouble getting an IV started in my poor swiss-cheesed left arm. I have tried to keep my infusions in one arm; the left, less used arm. After some difficulties and some false starts, P changed to the right arm. Then infusion went smoothly.
I had my routine physical Friday and was called with results today. My cholesterol has usually been below 100. Now it is a more normal 177. Most people would be alarmed that their cholesterol had risen 80 points in one year. I think it indicates a return to normalcy...as well as a greasy, fatty diet! Dr. Hema tends to agree. He didn't ask me to moderate my gluttony; we both believe that, as long as my weight and cholesterol are reasonable, that my lymphoma is the highest priority. Nonetheless, I am giving up pecan waffles and Cherry Garcia ice cream!
After this weeks treatments, I will have blood tests in two and four weeks and then a CT scan. We hope for a great report.
My infusion treatment started with a hitch. Nurse P had trouble getting an IV started in my poor swiss-cheesed left arm. I have tried to keep my infusions in one arm; the left, less used arm. After some difficulties and some false starts, P changed to the right arm. Then infusion went smoothly.
I had my routine physical Friday and was called with results today. My cholesterol has usually been below 100. Now it is a more normal 177. Most people would be alarmed that their cholesterol had risen 80 points in one year. I think it indicates a return to normalcy...as well as a greasy, fatty diet! Dr. Hema tends to agree. He didn't ask me to moderate my gluttony; we both believe that, as long as my weight and cholesterol are reasonable, that my lymphoma is the highest priority. Nonetheless, I am giving up pecan waffles and Cherry Garcia ice cream!
After this weeks treatments, I will have blood tests in two and four weeks and then a CT scan. We hope for a great report.
Saturday, March 20, 2010
Blood test results are in
I received a call from Nurse S. at Dr. Hema's office. As I had been told to expect by Dr. Hema, the results were good enough but not great. Evidently, as the fludarabine kills type B blood cells, the ones that carry lymphoma, hemaglobin is repressed as well. As the cancer is fought, apparently hemoglobin improves and then plateaus, exactly as mine has.
The real purpose of the tests, aside from monitoring my general health, is to be sure no passing infections have attacked and are defeating my immune system. They haven't.
March 29, I will be back in the infusion room for the sixth and final fludarabine treatment; spread over four consecutive days. I will be happy to get it over and behind me. Let's hope that lymphoma is behind me, as well!
We talked to a woman last Friday who said her father had had lymphoma for twenty years. I said I hoped I could have it for twenty years, meaning that, in effect, I could survive to at least age 87!
I got a stack of papers from Medicare today, indicating that they had paid just over $50,000 for my care from roughly November 1 to March 1. My medigap carrier has paid quite a lot, as well. I myself have only paid $155, my medicare deductible, out of pocket. It is quite remarkable if you know the amount that medical providers charge (huge!) and the amount that Medicare approves and pays (not huge, at all).
Please keep paying your federal taxes willingly and on time! I could never pay for this all myself.
The real purpose of the tests, aside from monitoring my general health, is to be sure no passing infections have attacked and are defeating my immune system. They haven't.
March 29, I will be back in the infusion room for the sixth and final fludarabine treatment; spread over four consecutive days. I will be happy to get it over and behind me. Let's hope that lymphoma is behind me, as well!
We talked to a woman last Friday who said her father had had lymphoma for twenty years. I said I hoped I could have it for twenty years, meaning that, in effect, I could survive to at least age 87!
I got a stack of papers from Medicare today, indicating that they had paid just over $50,000 for my care from roughly November 1 to March 1. My medigap carrier has paid quite a lot, as well. I myself have only paid $155, my medicare deductible, out of pocket. It is quite remarkable if you know the amount that medical providers charge (huge!) and the amount that Medicare approves and pays (not huge, at all).
Please keep paying your federal taxes willingly and on time! I could never pay for this all myself.
Monday, March 15, 2010
Blood test Monday
Today I went for my usual mid-treatment blood test. I have the test at my local doctor rather than driving for 45 minutes to Dr. Hema's office in Big City for a two minute test...and then 45 minutes back home.
Nurse K who runs the lab is so nice and so kind that it is almost a pleasure to be stuck and probed yet again. I have had some trouble getting the nice kids who man the telephones to realize that it is indeed acceptable to bring in an order from Dr. Hema to be carried out there. A firm but polite letter of complaint to my local doctor seems to have corrected my difficulties.
At my last visit with Dr. Hema, he said that my hemoglobin number was being held down a bit by the effects of the fludarabine; I expect that my plateaued number will continue. The main purpose of the tests is to be certain that my immune system has not declined due to the effects of the fludarabine. I have avoided crowds, stayed washed up and I feel pretty confident that I am healthier than I have been in many years.
Now if I can just get a clear report from Dr. Hema!
Nurse K who runs the lab is so nice and so kind that it is almost a pleasure to be stuck and probed yet again. I have had some trouble getting the nice kids who man the telephones to realize that it is indeed acceptable to bring in an order from Dr. Hema to be carried out there. A firm but polite letter of complaint to my local doctor seems to have corrected my difficulties.
At my last visit with Dr. Hema, he said that my hemoglobin number was being held down a bit by the effects of the fludarabine; I expect that my plateaued number will continue. The main purpose of the tests is to be certain that my immune system has not declined due to the effects of the fludarabine. I have avoided crowds, stayed washed up and I feel pretty confident that I am healthier than I have been in many years.
Now if I can just get a clear report from Dr. Hema!
Thursday, March 4, 2010
New attitudes
Cancer is, in its own way, funny. Today, we were entering Dr. Hema's offices to start the last day of round five of my six round fludarabine treatment. We encountered a very nice couple who we had seen Monday. He was in a recliner getting infused while his caring, concerned wife sat nearby.
As they were checking out and we were checking in, we exchanged the usual polite greetings. "Hello, how are you?" I asked him if that wasn't a loaded question, given where we were and what we were there for. He agreed and suggested we start over, but this time, being quite honest with each other. I asked, "How are you?" He said, "Lousy, actually. I have colon cancer, I'm undergoing chemo and it makes me sick. How are you?" I said, "Pretty darned bad. I have lymphoma, I'm undergoing chemo and it seems like there are treatments for the next thousand weeks."
He then said, "Well I hope you gain remission and never have to get another infusion and feel better." I said, "You mean, you hope to never see me again?" He smiled and said, "Exactly!" I said, "Well, my friend, I hope the same, that I never see you again."
They were a great couple and I wish them well.
Only in the infusion room is, "I hope I never see you again" a hopeful greeting.
I am glad to be 5/6ths of the way to the end of fludarabine treatments. I feel quite well and quite hopeful. My next milestone is blood testing on March 15. I have many marks on my forearm from having IVs inserted. In the illegal drug world, they are known as needle tracks. I have visions of the police noticing them and asking my drug of choice. I wonder if they would have to radio the station house to find out about fludarabine...and if they would be apologetic!
Thanks again, friends, for your well wishes.
As they were checking out and we were checking in, we exchanged the usual polite greetings. "Hello, how are you?" I asked him if that wasn't a loaded question, given where we were and what we were there for. He agreed and suggested we start over, but this time, being quite honest with each other. I asked, "How are you?" He said, "Lousy, actually. I have colon cancer, I'm undergoing chemo and it makes me sick. How are you?" I said, "Pretty darned bad. I have lymphoma, I'm undergoing chemo and it seems like there are treatments for the next thousand weeks."
He then said, "Well I hope you gain remission and never have to get another infusion and feel better." I said, "You mean, you hope to never see me again?" He smiled and said, "Exactly!" I said, "Well, my friend, I hope the same, that I never see you again."
They were a great couple and I wish them well.
Only in the infusion room is, "I hope I never see you again" a hopeful greeting.
I am glad to be 5/6ths of the way to the end of fludarabine treatments. I feel quite well and quite hopeful. My next milestone is blood testing on March 15. I have many marks on my forearm from having IVs inserted. In the illegal drug world, they are known as needle tracks. I have visions of the police noticing them and asking my drug of choice. I wonder if they would have to radio the station house to find out about fludarabine...and if they would be apologetic!
Thanks again, friends, for your well wishes.
Monday, March 1, 2010
Round five begins
Today, we ventured to Big City to start round five of the six round fludarabine regimen. I have been doing so well that, once again, the round will be completed in four consecutive days, instead of five as previously. As we expected, Dr. Hema was very pleased with my progress and, especially, my M-spike number. He expects the number to fall to zero by the end of round six. An M-spike number of zero and a clean CT scan would indicate remission. Of course, there are always unknowns and surprises. We could fall short of remission or, even if we achieve it, it might be short-lived or, hopefully, long-lived. Of course, "long" is a relative word.
Dr.Hema, my adorable wife and I are still very delighted with my progress. After the trouble with rituxan, it is wonderful to see good progress with nearly no side effects.
After round six is completed, I will report for blood tests every three months at Dr. Hema's office and, probably intermediate tests at my local, nearby physician.
I find myself in the unusual position of looking forward to painful, time-consuming and inconvenient infusions. They bring remission ever closer!
As we often do, we treated ourselves to a big lunch prior to infusion. Hey, we were showered and dressed, so why waste it without a nice meal.
All I want for my birthday and St. Patrick's Day and Easter and spring break is remission!
Today's weight: an alarming 183! Maybe I should rethink the whole big lunch program!
Dr.Hema, my adorable wife and I are still very delighted with my progress. After the trouble with rituxan, it is wonderful to see good progress with nearly no side effects.
After round six is completed, I will report for blood tests every three months at Dr. Hema's office and, probably intermediate tests at my local, nearby physician.
I find myself in the unusual position of looking forward to painful, time-consuming and inconvenient infusions. They bring remission ever closer!
As we often do, we treated ourselves to a big lunch prior to infusion. Hey, we were showered and dressed, so why waste it without a nice meal.
All I want for my birthday and St. Patrick's Day and Easter and spring break is remission!
Today's weight: an alarming 183! Maybe I should rethink the whole big lunch program!
Friday, February 19, 2010
Great news!
On our Friday date day, while we were sitting at the movies (I highly recommend Crazy Heart with Jeff Bridges), my phone rang. I went to the lobby and spoke with Nurse K. who gave a wonderful report. My M-spike number is now 0.55, down from 3.16! Normally, it is zero, so it is certainly trending in the right direction and, if my estimation is correct, pretty quickly. It sure seems like, since Sheriff Fludarabine hit town, that the lymphoma gang is leaving.
Last October, the IgM reading was an alarming 5120 versus a normal range of 60-263. In December, the level had improved to 1520. Today's report is another great improvement to 532. That's still a high number, but shows tremendous improvement!
My hemoglobin is plateaued at 12.9, but is just a tick outside the normal range of 13-17.
Needless to say, we are very happy and very encouraged by these steady improvements that trend towards normal. It seems like an early remission is a real possibility. As my friend N said, in encouragement, "Wait a minute, I think we can lick this thing!"
Thanks for sending me your encouragement, crossing your fingers and toes and for sending your prayers heavenward. It's working!
Whoopee!
Last October, the IgM reading was an alarming 5120 versus a normal range of 60-263. In December, the level had improved to 1520. Today's report is another great improvement to 532. That's still a high number, but shows tremendous improvement!
My hemoglobin is plateaued at 12.9, but is just a tick outside the normal range of 13-17.
Needless to say, we are very happy and very encouraged by these steady improvements that trend towards normal. It seems like an early remission is a real possibility. As my friend N said, in encouragement, "Wait a minute, I think we can lick this thing!"
Thanks for sending me your encouragement, crossing your fingers and toes and for sending your prayers heavenward. It's working!
Whoopee!
Wednesday, February 17, 2010
Calling Nurse K....
Last Monday, I had my mid-month blood tests, including the very informative M-spike reading. Because Dr. Hema's office is 45 minutes away, my local doctor's office, about seven minutes away, does the test and faxes the result to Dr. Hema. After evaluation, I am telephoned with the result.
As you may recall, a patient in remission should have an M-spike reading of zero. Several months ago, mine was 2.0 and after the rituxan treatments, it actually rose to 3.16. Of course, I am anxious to see what effect the fludarabine treatment is having. We all hope that the tide has turned and the numbers are trending back down towards zero.
I am realistic enough to realize that it is unlikely that I will take a treatment and suddenly be completely cured; cue the rainbow and break out the champagne. I believe every cancer patient, including me, has ups and downs. While I hope for the best and greatest test results ever known in all of medical history, I fully realize that sometimes the news will be good and sometimes it will be less good.
I am on the edge of my chair waiting for the telephone to ring and hear some hopefully good news from Nurse K.
As you may recall, a patient in remission should have an M-spike reading of zero. Several months ago, mine was 2.0 and after the rituxan treatments, it actually rose to 3.16. Of course, I am anxious to see what effect the fludarabine treatment is having. We all hope that the tide has turned and the numbers are trending back down towards zero.
I am realistic enough to realize that it is unlikely that I will take a treatment and suddenly be completely cured; cue the rainbow and break out the champagne. I believe every cancer patient, including me, has ups and downs. While I hope for the best and greatest test results ever known in all of medical history, I fully realize that sometimes the news will be good and sometimes it will be less good.
I am on the edge of my chair waiting for the telephone to ring and hear some hopefully good news from Nurse K.
Wednesday, February 3, 2010
Three of four of six
I completed the third of four treatments comprising the fourth of six rounds.
Sounds complicated, doesn't it? I get confused myself. I guess I'll just go on going until Dr. Hema says, "Stop! You're in remission! Go home, already!!!"
The treatments go well enough. They are painless and, thank heavens, have only trivial side effects. P the Piercer and I have it down to a slick routine so that the whole process takes less time than the commute. I have lately been sleeping through most of it.
So, how would you like to sleep with this thing in your arm a few nights a week? Nurse P asked if this was a good place, on the inside of my forearm, and I told her that if the Doc said I had achieved remission, that I'd think it was a great, fabulous, wonderful place!
Treatment continues rather uneventfully.
Monday, February 1, 2010
If it's the first of the month, it's time for chemo!
We were back to Big City today to start the next five day round of chemo. There was a pretty bad snow and ice storm over the weekend here (well, bad for South Carolina) and so we left home early and with some trepidation. By the time it was time to leave, the temperature had risen to 40 degrees and so the roads were wet and not icy. So many schools and other facilities were closed that traffic was rather light and, despite our trepidations, we made it to Dr. Hema's pierce-atorium in record time!
As usual, blood tests are taken first and are evaluated in the lab right in Dr. Hema's facility. Dr. Hema came in the examining room with the results and told us he was very impressed and very happy with the result. He also said he felt it is appropriate to fine-tune the dose. He suggested that, rather than administer less fludarabine each treatment day, that it would serve the same purpose, and be easier on me, to simply administer for fewer days! We agreed that the treatments would be given Monday through Thursday only.
That suits me, since Friday has been play day for my adorable wife and me for many years. We enjoy a big breakfast out and scan the movie schedule for the latest release. Then pizza and a glass of wine for dinner and we feel like we've had a nice all-day date!
My progress continues to suggest tremendous improvement in my health. My energy and sense of general well-being support this completely. I continue to be very encouraged and hopeful.
Thank you all for your comments and emails. I feel great knowing you are all hoping and praying for me!
As usual, blood tests are taken first and are evaluated in the lab right in Dr. Hema's facility. Dr. Hema came in the examining room with the results and told us he was very impressed and very happy with the result. He also said he felt it is appropriate to fine-tune the dose. He suggested that, rather than administer less fludarabine each treatment day, that it would serve the same purpose, and be easier on me, to simply administer for fewer days! We agreed that the treatments would be given Monday through Thursday only.
That suits me, since Friday has been play day for my adorable wife and me for many years. We enjoy a big breakfast out and scan the movie schedule for the latest release. Then pizza and a glass of wine for dinner and we feel like we've had a nice all-day date!
My progress continues to suggest tremendous improvement in my health. My energy and sense of general well-being support this completely. I continue to be very encouraged and hopeful.
Thank you all for your comments and emails. I feel great knowing you are all hoping and praying for me!
Thursday, January 21, 2010
More good news
I received a call from Dr. Hema's office reporting the results of the latest blood test. The most significant result, in my opinion, is that the hemoglobin level is now 13.1! That is a further improvement from the last number I reported to you, which was 12.7. The normal range, depending on who you read is 13 or 14 to 18. So, reading the most optimistic scale, I am now normal.
The red and white blood counts continue to be just a bit outside of normal, but just barely. All these continue to show progress towards as near perfect health as a 66 year old man can get. I am very encouraged and very happy!
The next round of treatments begins February 1. The treatments go pretty quickly and the nurses and doctors are very nice. It is a great opportunity to have a lunch date with my adorable wife. It is, however, saddening, because every person there is in a fight for their life and at least some of them may lose the fight.
Please continue your thoughts, prayers and crossed fingers. I appreciate all the help I can get and I am sure I will not overdose on the positive vibe!
The red and white blood counts continue to be just a bit outside of normal, but just barely. All these continue to show progress towards as near perfect health as a 66 year old man can get. I am very encouraged and very happy!
The next round of treatments begins February 1. The treatments go pretty quickly and the nurses and doctors are very nice. It is a great opportunity to have a lunch date with my adorable wife. It is, however, saddening, because every person there is in a fight for their life and at least some of them may lose the fight.
Please continue your thoughts, prayers and crossed fingers. I appreciate all the help I can get and I am sure I will not overdose on the positive vibe!
Thursday, January 14, 2010
My privacy policy
Several months ago, I went to a new doctor's office for a consultation. As a part of the new patient process, I was asked to sign an acknowledgement that I had received a copy of their written privacy policy. I'm sure you have seen them; they promise not to share your private medical details with anyone except your other doctors, Medicare, your insurance carrier, the county coroner and your designated spiritual guide. All very good!
I complained that I had not actually received a copy of the policy and that I would decline to sign a document acknowledging receipt of a document that I had not actually received. The office manager intervened and said they had a copy in a binder in plastic sleeves and asked if I would care to read it. I told her that if I was going to sign an acknowledgement, then I was darned well going to have to actually receive a copy! She acted as if I were a loon and, with many pained sighs and evil looks, made a photocopy for me to take home. I am quite sure she marked my file for all to see: "loon."
Am I a loon?
You may have noticed that I use initials and made up names throughout this blog. I do not know how Dr. Hema or Nurse P. or you, gentle reader, feel about internet notoriety. If I never use a real name and never identify anyone by name, or give any personally identifiable details, I don't think I have to worry.
Some of you have avatars that, if one has microscopic-quality vision, can identify you personally. If that is acceptable to you, then that's your decision. For me, however, I choose to keep as many details as possible private.
That is my privacy policy. No acknowledgement is required.
Monday, I have a blood test, including M-spike readings. I am very hopeful that my numbers have further improved. Please cross a finger for me!
I complained that I had not actually received a copy of the policy and that I would decline to sign a document acknowledging receipt of a document that I had not actually received. The office manager intervened and said they had a copy in a binder in plastic sleeves and asked if I would care to read it. I told her that if I was going to sign an acknowledgement, then I was darned well going to have to actually receive a copy! She acted as if I were a loon and, with many pained sighs and evil looks, made a photocopy for me to take home. I am quite sure she marked my file for all to see: "loon."
Am I a loon?
You may have noticed that I use initials and made up names throughout this blog. I do not know how Dr. Hema or Nurse P. or you, gentle reader, feel about internet notoriety. If I never use a real name and never identify anyone by name, or give any personally identifiable details, I don't think I have to worry.
Some of you have avatars that, if one has microscopic-quality vision, can identify you personally. If that is acceptable to you, then that's your decision. For me, however, I choose to keep as many details as possible private.
That is my privacy policy. No acknowledgement is required.
Monday, I have a blood test, including M-spike readings. I am very hopeful that my numbers have further improved. Please cross a finger for me!
Friday, January 8, 2010
Fifth day is completed!
The current fludarabine regimen is every day for five days, a four week break, five more daily treatments, etc., until six week-long treatments have been given. Today, I finished #3 of six. We are a long way from done, but we are gaining on it!
The treatments are relatively easy, taking about an hour. The IV port is left in my arm Monday, Tuesday and Thursday, so I am only pierced twice. We usually have lunch while we wait.
I am feeling very good about my progress, my blood test results, my overall health and energy. My good friend N suggested I would probably have a moment when I said to myself, "Hey! Wait a minute! I think I can conquer this darned thing!" He was right. I have had the moment!
I have a blood test scheduled for January 18 and the next round of treatments starts February 1. I am optimistic in the extreme!
The people in Dr. Hema's office and, especially in the infusion room, are very nice. Every person that I have come in contact with is extremely kind and compassionate. I assume it's because of the example Dr. Hema sets, but every person is as sweet and caring as anyone could possibly be. Thank you, Doc!
Today's weight: I was afraid to look!
The treatments are relatively easy, taking about an hour. The IV port is left in my arm Monday, Tuesday and Thursday, so I am only pierced twice. We usually have lunch while we wait.
I am feeling very good about my progress, my blood test results, my overall health and energy. My good friend N suggested I would probably have a moment when I said to myself, "Hey! Wait a minute! I think I can conquer this darned thing!" He was right. I have had the moment!
I have a blood test scheduled for January 18 and the next round of treatments starts February 1. I am optimistic in the extreme!
The people in Dr. Hema's office and, especially in the infusion room, are very nice. Every person that I have come in contact with is extremely kind and compassionate. I assume it's because of the example Dr. Hema sets, but every person is as sweet and caring as anyone could possibly be. Thank you, Doc!
Today's weight: I was afraid to look!
Monday, January 4, 2010
Back in the recliner again!
Today I started round three of six rounds of chemo. As usual, the process starts with fairly extensive blood tests to determine my progress, or lack, before the infusion begins. Dr. Hema then discusses the results with me and pokes and prods a bit before I am sent back to begin infusion. Dr. Hema came in the examining room with my file and a huge grin on his face! He said my hemoglobin is now 13.3. The normal range, according to his in-house lab, is in the range from 14 to 18. This is an improvement from just two weeks ago, when it was 12.7. All this suggests that the lymphoma is declining and normal health is gaining! We are all very encouraged.
He expressed regret that we went through the difficult and lengthy rituxan process for no improvement. I told him that, in my family (think of dear Uncle R), we believe that if we knew then what we know now, we'd have bought Google at $80. In other words, one almost never knows the right decision six months in advance. We must take our best shot and move forward. We do know that no-one ever gets healthy, or wealthy, by waiting and waiting until all the facts are in. Procrastination never stops cancer.
I feel great!
Today's weight: 177.5. I have resolved to strictly moderate my gluttony right after I finish my fried chicken dinner Wednesday night! That is about twenty pounds (!) gained since we went to Cape Cod in August. If I gain twenty pounds every six months, I expect that Discovery Channel will come knocking, asking if I will star in a new reality program, "Half-ton Grampa."
He expressed regret that we went through the difficult and lengthy rituxan process for no improvement. I told him that, in my family (think of dear Uncle R), we believe that if we knew then what we know now, we'd have bought Google at $80. In other words, one almost never knows the right decision six months in advance. We must take our best shot and move forward. We do know that no-one ever gets healthy, or wealthy, by waiting and waiting until all the facts are in. Procrastination never stops cancer.
I feel great!
Today's weight: 177.5. I have resolved to strictly moderate my gluttony right after I finish my fried chicken dinner Wednesday night! That is about twenty pounds (!) gained since we went to Cape Cod in August. If I gain twenty pounds every six months, I expect that Discovery Channel will come knocking, asking if I will star in a new reality program, "Half-ton Grampa."
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