12-18-15
Good news since my last post. Having since then been on two chemo regimens and a doubling of steroid infusion, the blood tests are remarkably close to normal. Further, I now have little pain from the lesion for which I had the radiation treatments. Not in remission (which with respect to MM, I define as waiting for another bout) but apparently close.
I have had a heart murmur (mitral valve prolapse which I refer to as my MVP) for many years. In the course of trying to determine the cause of my leg swelling, an I.U. cardiologist ordered an echo EKG, read it, and determined open heart surgery was called for, but not until the MM was under control. Referred on to two surgeons who agreed that there was no immediate need but that the valve should be repaired once the MM was in remission. I have no reason to doubt their conclusion, but I have had echos for many years, the latest in 2014, administered by my cardiologist, who I have asked to look at this recent echo to see what he thinks. Up to now he has said surgery is an option but probably not necessary since there has been no change over the many years. Since I have never had patent symptoms, I don't think he has so advised to take advantage on the golf course.
Coming down from the double steroid, if that is what I am experiencing, is a bit difficult. Up and about with energy yesterday but almost total collapse last evening. If next week is the same, no Christmas Eve service for me, and as I write, I wonder what I will be like a week from now when the gang arrives. Maybe some can come at 5:00 a.m. (now) when I am alert.
Whatever I wish you a Merry Christmas (or whatever you celebrate) and a happy New Year. I will get back here mid January
Friday, December 18, 2015
Friday, November 13, 2015
Mu;tiple Myeloma
11-13-15
Met with Dr. Abonour on Wednesday to learn that the newest regimen did not favorably affect the bad blood test - to the contrary, the bad got badder. Consequently, I am beginning another regimen, much like my first one from more than two years back, with the hope to get the bad under control by the end of the year when promising new drugs should be available.
The amusing aspect of that first regimen, which those of you who have labored along with me since the blog started will remember, was the commitment and reporting concerning unprotected sex. Again now, I have agreed to proper behavior by signing a three page series of commitments. One statement of truth would have been enough to cover all three pages.
I have no physical awareness of "the bad got badder", possibly because I have the other matters mentioned below with which to deal, but more likely because the bad simply is not patent. Some of the other matters are.
Just over two weeks ago I ended five days of radiation to clear (we hope) the lesion where my hip bone connects to my thigh bone. The Docs say we should know in 6,8, or 10 weeks if the zapping did the job. So, I continue to get about with a cane and have a self-rating pain scale of 0-10, with 0 meaning none and 10 being a faint. I have many zero times, no faints to date. Despite that 6,8,10 wait, I believe I have some lessening of pain in walking, maybe a good sign.
Probably unrelated to the cancer, but more troublesome just now, I have considerable swelling in my feet and ankles, so much that the skin has broken in two spots on my right leg. Diuretics have not helped. I am going to the IU Wound center next week to see if they can help.
I continue to believe whatever will be, will be, so I do what Dr. Abonour and the other doctors say to do, and proceed.
My greatest frustration, which I have had for years and which is unrelated to mortality, is knowing I cannot get read all I have to read. My desktop is full, my iPad has books unopened, and I keep adding others. I am a mile wide and an inch deep in my reading - there ought to be a subject in which I have no interest. I suppose that is better than having nothing of interest - then I might worry about having cancer.
I see Dr. Abonour on December 16 and will be back here soon thereafter. If in the interim there are remarkable results on the other problems, I will report them.
Have a great Thanksgiving.
Met with Dr. Abonour on Wednesday to learn that the newest regimen did not favorably affect the bad blood test - to the contrary, the bad got badder. Consequently, I am beginning another regimen, much like my first one from more than two years back, with the hope to get the bad under control by the end of the year when promising new drugs should be available.
The amusing aspect of that first regimen, which those of you who have labored along with me since the blog started will remember, was the commitment and reporting concerning unprotected sex. Again now, I have agreed to proper behavior by signing a three page series of commitments. One statement of truth would have been enough to cover all three pages.
I have no physical awareness of "the bad got badder", possibly because I have the other matters mentioned below with which to deal, but more likely because the bad simply is not patent. Some of the other matters are.
Just over two weeks ago I ended five days of radiation to clear (we hope) the lesion where my hip bone connects to my thigh bone. The Docs say we should know in 6,8, or 10 weeks if the zapping did the job. So, I continue to get about with a cane and have a self-rating pain scale of 0-10, with 0 meaning none and 10 being a faint. I have many zero times, no faints to date. Despite that 6,8,10 wait, I believe I have some lessening of pain in walking, maybe a good sign.
Probably unrelated to the cancer, but more troublesome just now, I have considerable swelling in my feet and ankles, so much that the skin has broken in two spots on my right leg. Diuretics have not helped. I am going to the IU Wound center next week to see if they can help.
I continue to believe whatever will be, will be, so I do what Dr. Abonour and the other doctors say to do, and proceed.
My greatest frustration, which I have had for years and which is unrelated to mortality, is knowing I cannot get read all I have to read. My desktop is full, my iPad has books unopened, and I keep adding others. I am a mile wide and an inch deep in my reading - there ought to be a subject in which I have no interest. I suppose that is better than having nothing of interest - then I might worry about having cancer.
I see Dr. Abonour on December 16 and will be back here soon thereafter. If in the interim there are remarkable results on the other problems, I will report them.
Have a great Thanksgiving.
Friday, October 30, 2015
Multiple Myeloma
10-30-15
I said in my last blog I would see Dr. Abonour on November 4 and would report soon thereafter - not so, I see him on November 11 to learn if the latest regimen is working, and I will report soon thereafter.
Regarding the radiation treatments: had number five last Wednesday and now the wait. In essence, I will determine if the treatments were successful - if I no longer have the pain in my right leg. In the interim, I am to be very careful with the leg, if I do something that hurts, I don't do it. The hope is the cancer cells will be gone and the bone will regenerate.
We were surprised to see the area of zapping. They did not pinpoint the lesion, they zapped from my middle to my exterior, said they hoped to get any cancer cells in the area. That makes sense to me, and I just lay on the table and let them have at it. The only discomfort was in my tailbone - those table are not very comfortable.
I have not had pain relief in these two days since the last treatment. Not unusual, they tell me weeks may be required for full relief. They repeat: "behave, with limited activity" so I will.
I will be back soon after 11/11.
I said in my last blog I would see Dr. Abonour on November 4 and would report soon thereafter - not so, I see him on November 11 to learn if the latest regimen is working, and I will report soon thereafter.
Regarding the radiation treatments: had number five last Wednesday and now the wait. In essence, I will determine if the treatments were successful - if I no longer have the pain in my right leg. In the interim, I am to be very careful with the leg, if I do something that hurts, I don't do it. The hope is the cancer cells will be gone and the bone will regenerate.
We were surprised to see the area of zapping. They did not pinpoint the lesion, they zapped from my middle to my exterior, said they hoped to get any cancer cells in the area. That makes sense to me, and I just lay on the table and let them have at it. The only discomfort was in my tailbone - those table are not very comfortable.
I have not had pain relief in these two days since the last treatment. Not unusual, they tell me weeks may be required for full relief. They repeat: "behave, with limited activity" so I will.
I will be back soon after 11/11.
Saturday, October 17, 2015
Multiple Myeloma
10-17-15
I just read the last post, had not remembered I said I would get back in a week, not even certain why I said it. I will try to get current.
Re the cancer, the switch did not work. That bad blood test is out of sight, above 1,000 with 9 being the suggested high. So, this past Wednesday I got back on a three week on, one week off regimen, with a combination of chemos which has worked for others. I will see Dr. Abonour on 11-4 to learn if this new regimen works better and will report here.
Re the lesion on my ilium, which I call a hole in my hip bone, I am to begin radiation therapy on 10-22. They will zap me 4, 5, or 10, times - not sure which. The intent is to destroy the lesion (cancer) to allow the bone to regenerate. I will have to be careful walking or whatever for 10 weeks or so but then possibly will be able to swing a club again. I put too much emphasis on the golf nonsense, haven't wanted to swing a club, but it is a goal I suppose - better than jogging which I have never wanted to do.
I had a scan yesterday for them to have a "picture" to use for the zapping. Unfortunately, I twisted improperly (my fault) getting on the table and incurred a strong 9 pain level in my upper right leg, remnants of which I feel today. In addition, I started two new drugs last evening to reduce extra fluid in my body (edema) primarily in my ankles - drugs my body is not accepting well. The combination of those two items has me house bound, fatigued, and sleepy - useless, in other words. About the only exercise I get right now is jumping to conclusions.
I do try, however, to stay out of Mary Ann's way so she can get the deck painted, the birds fed, the new plantings watered, the laundry done, and food ready upon command. She is, you know, younger than I.
For those of you who sneak a look here from time-to-time, I will get back with the radiation schedule sometime next week. I might even relate what zapping is like - I expect it will be much preparation for a quick hit.
I still enjoy ice cream every day, often more than once, and get three or four hours of reading before the normal breakfast hour.
I just read the last post, had not remembered I said I would get back in a week, not even certain why I said it. I will try to get current.
Re the cancer, the switch did not work. That bad blood test is out of sight, above 1,000 with 9 being the suggested high. So, this past Wednesday I got back on a three week on, one week off regimen, with a combination of chemos which has worked for others. I will see Dr. Abonour on 11-4 to learn if this new regimen works better and will report here.
Re the lesion on my ilium, which I call a hole in my hip bone, I am to begin radiation therapy on 10-22. They will zap me 4, 5, or 10, times - not sure which. The intent is to destroy the lesion (cancer) to allow the bone to regenerate. I will have to be careful walking or whatever for 10 weeks or so but then possibly will be able to swing a club again. I put too much emphasis on the golf nonsense, haven't wanted to swing a club, but it is a goal I suppose - better than jogging which I have never wanted to do.
I had a scan yesterday for them to have a "picture" to use for the zapping. Unfortunately, I twisted improperly (my fault) getting on the table and incurred a strong 9 pain level in my upper right leg, remnants of which I feel today. In addition, I started two new drugs last evening to reduce extra fluid in my body (edema) primarily in my ankles - drugs my body is not accepting well. The combination of those two items has me house bound, fatigued, and sleepy - useless, in other words. About the only exercise I get right now is jumping to conclusions.
I do try, however, to stay out of Mary Ann's way so she can get the deck painted, the birds fed, the new plantings watered, the laundry done, and food ready upon command. She is, you know, younger than I.
For those of you who sneak a look here from time-to-time, I will get back with the radiation schedule sometime next week. I might even relate what zapping is like - I expect it will be much preparation for a quick hit.
I still enjoy ice cream every day, often more than once, and get three or four hours of reading before the normal breakfast hour.
Wednesday, September 9, 2015
Multiple Myeloma
9-10-15
Saw Dr. Abonour yesterday, learned that my chemo treatments are not working. The bad blood test was at its baddest, and I have a myelomatous deposit where the thigh bone meets the hip bone (does that ring a bell?) the seriousness of which is yet to be determined by consult with an orthopedic surgeon. Starting next Wednesday (9-16) I will be infused with a different, stronger, chemo, two weeks on, two weeks off, and will see Dr. Abonour again on October 14. Paraphrasing a famous rabbi, that's the story, what follows is commentary.
Many days ago I began having pain in my right leg. It was mainly in the groin and the nurses in the infusion room suggested I see my internist to determine if I had a hernia. I did, he decided no hernia, recommended advil or aleve, both of which I tried (not at the same time) to no avail. The pain continued while walking and spread throughout the leg.
On Monday 8-31 as I was walking, painfully, out of the building where I get infusions and where I drop off, better said, drip off, blood for the studies, one of the infusion nurses (more on them later) stopped me, said I needed a scan. She contacted the oncology nurse and I had a Pet scan that evening - very quick scheduling.
About the nurses in the infusion center. They are a remarkable group, caring, competent, upbeat, I really enjoy and respect them - almost worth having MM just to flirt with them on a near weekly basis. As noted in the previous paragraph, if they think more than infusion is needed, they say so, and even see to it.
On Tuesday 9-1 I had to walk about 50 yards in and out of a building and the pain was severe, had to stop two or three times each way - little pain standing or sitting.
On Wednesday as I was being infused, Dr. Abonour walked to my chair (I was not scheduled to see him) to tell me the Pet scan revealed the lesion (deposit) mentioned in the first paragraph - that my pain problem was caused by my cancer. He did not mention a change in chemo but did say he was consulting with an orthopedic surgeon. He suggested crutches or a cane until I saw him on 9-9.
I am not competent with crutches (probably because I don't want to be) but I am learning to use the cane which I began as soon as I got home. Learning because I have no severe pain while doing so. I know it is the cane because I do have pain when I try to move without it and when I have a twinge on stepping improperly with it. I may be stuck with the cane forever - comfort trumps vanity.
I don't know what the consequences will be from the new chemo. I should not lose the mop, I may suffer nausea. Fatigue is a greater problem and my feet problems continue. I am useless for yard work, for any strenuous activity. Mostly, I am comfortable.
I will get back here late next week. In the meantime, I still believe, que sera, sera, and I don't look for my obit in the paper.
Peace be with you.
Saw Dr. Abonour yesterday, learned that my chemo treatments are not working. The bad blood test was at its baddest, and I have a myelomatous deposit where the thigh bone meets the hip bone (does that ring a bell?) the seriousness of which is yet to be determined by consult with an orthopedic surgeon. Starting next Wednesday (9-16) I will be infused with a different, stronger, chemo, two weeks on, two weeks off, and will see Dr. Abonour again on October 14. Paraphrasing a famous rabbi, that's the story, what follows is commentary.
Many days ago I began having pain in my right leg. It was mainly in the groin and the nurses in the infusion room suggested I see my internist to determine if I had a hernia. I did, he decided no hernia, recommended advil or aleve, both of which I tried (not at the same time) to no avail. The pain continued while walking and spread throughout the leg.
On Monday 8-31 as I was walking, painfully, out of the building where I get infusions and where I drop off, better said, drip off, blood for the studies, one of the infusion nurses (more on them later) stopped me, said I needed a scan. She contacted the oncology nurse and I had a Pet scan that evening - very quick scheduling.
About the nurses in the infusion center. They are a remarkable group, caring, competent, upbeat, I really enjoy and respect them - almost worth having MM just to flirt with them on a near weekly basis. As noted in the previous paragraph, if they think more than infusion is needed, they say so, and even see to it.
On Tuesday 9-1 I had to walk about 50 yards in and out of a building and the pain was severe, had to stop two or three times each way - little pain standing or sitting.
On Wednesday as I was being infused, Dr. Abonour walked to my chair (I was not scheduled to see him) to tell me the Pet scan revealed the lesion (deposit) mentioned in the first paragraph - that my pain problem was caused by my cancer. He did not mention a change in chemo but did say he was consulting with an orthopedic surgeon. He suggested crutches or a cane until I saw him on 9-9.
I am not competent with crutches (probably because I don't want to be) but I am learning to use the cane which I began as soon as I got home. Learning because I have no severe pain while doing so. I know it is the cane because I do have pain when I try to move without it and when I have a twinge on stepping improperly with it. I may be stuck with the cane forever - comfort trumps vanity.
I don't know what the consequences will be from the new chemo. I should not lose the mop, I may suffer nausea. Fatigue is a greater problem and my feet problems continue. I am useless for yard work, for any strenuous activity. Mostly, I am comfortable.
I will get back here late next week. In the meantime, I still believe, que sera, sera, and I don't look for my obit in the paper.
Peace be with you.
Friday, August 14, 2015
Multiple Myeloma
8-14-15
Again, not much to report. The bad readings continue to get a bit worse, as does my fatigue.
Dr. Abonour is on vacation so I did not see him Wednesday. Another oncologist read my labs, spoke with Dr. Abonour, and together they decided to continue me on the regimen of three weeks on, one week off. I will see Dr. Abonour on Wednesday, September 9. I will get back here soon thereafter.
Dr. Abonour has suggested I might, despite my age, be a candidate for stem cell treatment. I seldom research possibilities, dealing with reality is enough, but my caring sister is a bit more inquisitive (I probably would be about her condition) so she went to the internet to see what stem cell treatment might entail and told me it didn't sound pleasant. I checked and before I could sign off realized that it is not pleasant, quite the contrary. I hope I (we) don't have to decide if I should have stem cell treatment - I suspect we would have to have a family conference.
I will be back in September. In the meantime, live well.
Again, not much to report. The bad readings continue to get a bit worse, as does my fatigue.
Dr. Abonour is on vacation so I did not see him Wednesday. Another oncologist read my labs, spoke with Dr. Abonour, and together they decided to continue me on the regimen of three weeks on, one week off. I will see Dr. Abonour on Wednesday, September 9. I will get back here soon thereafter.
Dr. Abonour has suggested I might, despite my age, be a candidate for stem cell treatment. I seldom research possibilities, dealing with reality is enough, but my caring sister is a bit more inquisitive (I probably would be about her condition) so she went to the internet to see what stem cell treatment might entail and told me it didn't sound pleasant. I checked and before I could sign off realized that it is not pleasant, quite the contrary. I hope I (we) don't have to decide if I should have stem cell treatment - I suspect we would have to have a family conference.
I will be back in September. In the meantime, live well.
Thursday, July 16, 2015
Multiple Myeloma
7-16-15
Nearly forgot to report here - not much of interest to relate. The bad blood test got a bit worse, but at a much reduced rate. So, Dr. Abonour decided no need to change the regimen of three weeks on, one week off, to see if there is a decrease when I next report on or about August 15.
This disease is confusing. I had four really blah days prior to last Tuesday. That afternoon I struggled to nap, swallowed an oxycodone, slept for about 90 minutes and awakened feeling better than I have for months. Tuesday night I slept for nearly eight hours - neither Mary Ann nor I can remember my having slept that long. Consequently, I saw Dr. Abonour feeling very well, nothing to complain about.
Last night, struggled to get to sleep, unusual, and when I did, slept for just over three hours. I did nothing different from Tuesday, same activity, much the same food, same bed, different result. The point is, every day is a surprise, with my having no control over the result.
Mary Ann and I are about to leave for Wabash to join some of my remaining classmates to celebrate our 65th graduation from high school. We are now at the age when you quit lying and start bragging about it.
Hope all is well with you. I continue to believe, despite having cancer, that I am doing very well.
Nearly forgot to report here - not much of interest to relate. The bad blood test got a bit worse, but at a much reduced rate. So, Dr. Abonour decided no need to change the regimen of three weeks on, one week off, to see if there is a decrease when I next report on or about August 15.
This disease is confusing. I had four really blah days prior to last Tuesday. That afternoon I struggled to nap, swallowed an oxycodone, slept for about 90 minutes and awakened feeling better than I have for months. Tuesday night I slept for nearly eight hours - neither Mary Ann nor I can remember my having slept that long. Consequently, I saw Dr. Abonour feeling very well, nothing to complain about.
Last night, struggled to get to sleep, unusual, and when I did, slept for just over three hours. I did nothing different from Tuesday, same activity, much the same food, same bed, different result. The point is, every day is a surprise, with my having no control over the result.
Mary Ann and I are about to leave for Wabash to join some of my remaining classmates to celebrate our 65th graduation from high school. We are now at the age when you quit lying and start bragging about it.
Hope all is well with you. I continue to believe, despite having cancer, that I am doing very well.
Thursday, June 25, 2015
Multiple Myeloma
6-25-15
The short version: the bad blood test got worse the past month resulting in my having to return to the three weeks on, one week off, schedule of infusions, the first was yesterday. Not a surprise, I have been more tired recently, some of which even Dr. Abonour agrees is due to the increasing poor reading. I will see him again on July 15, and will be back here then. On to the details, and a few words about Mary Ann's surgery.
The acceptable range for the Kappa/Lambda test is approximately 5-9. Late in 2014, my reading spiked at 600+. I began the infusions of chemo and steroids with the following reports from Dr. Abonour:
1-7-15 stable and not worsening, continue current treatment;
2-9-15 in complete remission, continue current treatment;
3-9-15 in complete remission, change to two on from three on,
4-9-15 near complete remission, continue current treatment;
5-5-15 near complete remission, continue current treatment;
6-1-15 stable and not worsening, continue current treatment.
Then yesterday the reading was 200+, thus the return to three on, one off, hoping to return to remission. We know MM is not curable but is treatable - we will see if the return works. The change to two on, two off, was called for because the infusions are so expensive and chemo/steroids need to be limited if at all possible. We will know in July if the return is working.
As I have mentioned many times, my only symptoms are fatigue and troublesome feet, neither of which are apparent to an occasional viewer (Mary Ann does say she sees fatigue levels) but she has to look at me late in the day. I can best define how tired I have been recently by noting that my golf clubs are in the garage and I have had no interest in using them even for a few holes.
I do not sleep well. Yesterday Dr. Abonour told me to take one oxycodone before bed time which I did last night and I slept well for 5+ hours. Despite the horror stories about oxy, I will continue taking one at night to see if I have good sleep results.
About Mary Ann. She had foot surgery three weeks ago. But for short trips to the bathroom, she was bed ridden with a heavy boot. She was using a knee scooter. She fell three times, the last hitting her head on the tile floor. Part of the reason she fell was a prescribed drug reaction causing her to be more than a little ditzy. The last time also resulted in our getting her to ER for evaluation, including x/rays of her skull. Every test was negative, so she was released with the admonition to not take the pain pills. We got her back to the surgeon and he prescribed a different pill, plus she has hydrocodone, which she could take - much better results.
Now she has a walking shoe and is able to get about the house a bit. She, too, is very tired, and has no appetite. She believes, and I agree, she needs to get the drugs out of her system to return to normal. I hope she doesn't waste away in the meantime.
So I have been a care giver for a few weeks. I have it down pat: I help just enough to get her to the point of wanting me to get back in my cave.
Actually, Karen who lives with us has been great, not only with Mary Ann but with food and laundry handing. Without her here I could not have taken care of Mary Ann.
We have had a few interesting weeks - we are hoping we all get better now.
The short version: the bad blood test got worse the past month resulting in my having to return to the three weeks on, one week off, schedule of infusions, the first was yesterday. Not a surprise, I have been more tired recently, some of which even Dr. Abonour agrees is due to the increasing poor reading. I will see him again on July 15, and will be back here then. On to the details, and a few words about Mary Ann's surgery.
The acceptable range for the Kappa/Lambda test is approximately 5-9. Late in 2014, my reading spiked at 600+. I began the infusions of chemo and steroids with the following reports from Dr. Abonour:
1-7-15 stable and not worsening, continue current treatment;
2-9-15 in complete remission, continue current treatment;
3-9-15 in complete remission, change to two on from three on,
4-9-15 near complete remission, continue current treatment;
5-5-15 near complete remission, continue current treatment;
6-1-15 stable and not worsening, continue current treatment.
Then yesterday the reading was 200+, thus the return to three on, one off, hoping to return to remission. We know MM is not curable but is treatable - we will see if the return works. The change to two on, two off, was called for because the infusions are so expensive and chemo/steroids need to be limited if at all possible. We will know in July if the return is working.
As I have mentioned many times, my only symptoms are fatigue and troublesome feet, neither of which are apparent to an occasional viewer (Mary Ann does say she sees fatigue levels) but she has to look at me late in the day. I can best define how tired I have been recently by noting that my golf clubs are in the garage and I have had no interest in using them even for a few holes.
I do not sleep well. Yesterday Dr. Abonour told me to take one oxycodone before bed time which I did last night and I slept well for 5+ hours. Despite the horror stories about oxy, I will continue taking one at night to see if I have good sleep results.
About Mary Ann. She had foot surgery three weeks ago. But for short trips to the bathroom, she was bed ridden with a heavy boot. She was using a knee scooter. She fell three times, the last hitting her head on the tile floor. Part of the reason she fell was a prescribed drug reaction causing her to be more than a little ditzy. The last time also resulted in our getting her to ER for evaluation, including x/rays of her skull. Every test was negative, so she was released with the admonition to not take the pain pills. We got her back to the surgeon and he prescribed a different pill, plus she has hydrocodone, which she could take - much better results.
Now she has a walking shoe and is able to get about the house a bit. She, too, is very tired, and has no appetite. She believes, and I agree, she needs to get the drugs out of her system to return to normal. I hope she doesn't waste away in the meantime.
So I have been a care giver for a few weeks. I have it down pat: I help just enough to get her to the point of wanting me to get back in my cave.
Actually, Karen who lives with us has been great, not only with Mary Ann but with food and laundry handing. Without her here I could not have taken care of Mary Ann.
We have had a few interesting weeks - we are hoping we all get better now.
Friday, May 29, 2015
Multiple Myeloma
5-29-15
Saw Dr. Abonour on Wednesday, the "bad" blood test was a bit worse but not enough to change my treatment regimen because the other critical tests are fine. That Kappa/Lambda test just says I have MM, but "near complete remission" continues.
Yesterday, the day following my chemo and steroid infusions, was interesting. I stumbled and staggered most of the day, more than usual. I believe that resulted from my trying some over-the-counter sleep aids suggested by Dr. Abonour. He knows my fatigue is caused by MM but believes it is enhanced by my beginning my reading day very early in the morning. I did sleep longer, and having taken those aids again last night, am not so shaky this morning. I will try taking only one tonight to see if I am better tomorrow morning.
I see Dr. Abonour next on June 24th and will get back here soon thereafter.
Saw Dr. Abonour on Wednesday, the "bad" blood test was a bit worse but not enough to change my treatment regimen because the other critical tests are fine. That Kappa/Lambda test just says I have MM, but "near complete remission" continues.
Yesterday, the day following my chemo and steroid infusions, was interesting. I stumbled and staggered most of the day, more than usual. I believe that resulted from my trying some over-the-counter sleep aids suggested by Dr. Abonour. He knows my fatigue is caused by MM but believes it is enhanced by my beginning my reading day very early in the morning. I did sleep longer, and having taken those aids again last night, am not so shaky this morning. I will try taking only one tonight to see if I am better tomorrow morning.
I see Dr. Abonour next on June 24th and will get back here soon thereafter.
Thursday, April 30, 2015
Multiple Myeloma
4-30-15
For my quick readers, the latest blood tests were all good, some very good, except the disturbing one which was a bit worse. Because of the good ones and since the bad might have been influenced some by my cold and cough, often severe, for weeks leading up to the blood draw, Dr. Abonour said we would stay on the "two weeks on, two weeks off" regimen and I am scheduled to see him again on May 27. He said he was pleased with my status. Now, the long version.
Until recently, April was not a good month. The cold and cough were debilitating. My feet bothered me more that usual. I had swollen ankles (a bad sign for those with MM), Very tired, I even agreed with Mary Ann that mowing was too much so have help with that, and I didn't move a fork full of mulch, had help with that too. So, as my visit to Dr. Abonour neared, we were wondering if MM was acting up.
Then, a few days prior to the visit, the symptoms disappeared or decreased considerably. No swollen ankles, ready to try mowing again even though I haven't, able to miss an afternoon nap without noticeable effect on fatigue. As we walked in to see Dr. Abonour we were pleased. When he asked how I was, rather than ask him to tell me i.e. blood test results, I related the good news, he told us the results of the blood tests, and we decided to proceed as stated above.
We were reminded that I don't have telling symptoms from visit to visit with Dr. Abonour, at least I haven't had any to date. Just before the visit, we do wonder what we will hear, but most of the time. its "whatever will be, will be" as I have often mentioned. But just recently I have been given a new slant on that saying.
In his book "Schizophrenic God" Steve Shank says "que sera, sera" (whatever will be, will be) is an indication of God's "extreme sovereignty" and that God has predestined all that has and will happen.
Shank disagrees, relates "free will" as the proper alternative - that Jesus came to wage war on the devil and we need to do likewise. Not that it matters, but having gotten this far, and with all due respect to my Presbyterian friends, I side with Shank even though I disagree with him on much of what he says in the book.
Another stray into religion, a dangerous place to be, but one more observation. I don't recall the source, but someone counted the 2014 Bible quotes on twitter and found Philipians 4:13 "I can do all things through him who strengthens me" appeared 613,161 times. Second, far behind, was 1 Peter 5:7 "Cast all your anxiety on him because he cares for you" 261,417times. Apparently twitter commenters are more concerned about self than about anything Jesus is reported to have said (what I read did not get to any Jesus statements).
Enough already. There is a way, I think, to allow comments on nonsense like this blog, but I didn't find it when I started and won't now. But for anyone wanting to set me straight on some of my musings, feel free to write to "kbwilson@comcast.net" to remind me that nothing is more disturbing in an argument than realizing you are wrong.
I will be back at the end of May.
For my quick readers, the latest blood tests were all good, some very good, except the disturbing one which was a bit worse. Because of the good ones and since the bad might have been influenced some by my cold and cough, often severe, for weeks leading up to the blood draw, Dr. Abonour said we would stay on the "two weeks on, two weeks off" regimen and I am scheduled to see him again on May 27. He said he was pleased with my status. Now, the long version.
Until recently, April was not a good month. The cold and cough were debilitating. My feet bothered me more that usual. I had swollen ankles (a bad sign for those with MM), Very tired, I even agreed with Mary Ann that mowing was too much so have help with that, and I didn't move a fork full of mulch, had help with that too. So, as my visit to Dr. Abonour neared, we were wondering if MM was acting up.
Then, a few days prior to the visit, the symptoms disappeared or decreased considerably. No swollen ankles, ready to try mowing again even though I haven't, able to miss an afternoon nap without noticeable effect on fatigue. As we walked in to see Dr. Abonour we were pleased. When he asked how I was, rather than ask him to tell me i.e. blood test results, I related the good news, he told us the results of the blood tests, and we decided to proceed as stated above.
We were reminded that I don't have telling symptoms from visit to visit with Dr. Abonour, at least I haven't had any to date. Just before the visit, we do wonder what we will hear, but most of the time. its "whatever will be, will be" as I have often mentioned. But just recently I have been given a new slant on that saying.
In his book "Schizophrenic God" Steve Shank says "que sera, sera" (whatever will be, will be) is an indication of God's "extreme sovereignty" and that God has predestined all that has and will happen.
Shank disagrees, relates "free will" as the proper alternative - that Jesus came to wage war on the devil and we need to do likewise. Not that it matters, but having gotten this far, and with all due respect to my Presbyterian friends, I side with Shank even though I disagree with him on much of what he says in the book.
Another stray into religion, a dangerous place to be, but one more observation. I don't recall the source, but someone counted the 2014 Bible quotes on twitter and found Philipians 4:13 "I can do all things through him who strengthens me" appeared 613,161 times. Second, far behind, was 1 Peter 5:7 "Cast all your anxiety on him because he cares for you" 261,417times. Apparently twitter commenters are more concerned about self than about anything Jesus is reported to have said (what I read did not get to any Jesus statements).
Enough already. There is a way, I think, to allow comments on nonsense like this blog, but I didn't find it when I started and won't now. But for anyone wanting to set me straight on some of my musings, feel free to write to "kbwilson@comcast.net" to remind me that nothing is more disturbing in an argument than realizing you are wrong.
I will be back at the end of May.
Thursday, April 16, 2015
Multiple Myeloma
4-16-15
I said in my 4-2 post that I would get back here the next week after getting Dr. Abonour's written evaluation of my MM - just noticed I said "hop" not "hope" in the last paragraph.
I didn't hop to it because I didn't get the written evaluation, still haven't. That may be due to my 5-8 experience with scheduled infusions.
I had a bad cold (is there a good cold) on 4-8. I was hooked up to the usual beginning saline infusion for about an hour waiting for Dr. Abonour to authorize proceeding with the chemo and steroid infusions. After reviewing again my most recent blood tests plus my current temp and BP, he gave the order to proceed. All in all, nearly three hours in the chair later, I escaped with a slight bruise from the needle in my arm, and a larger one unseen in my posterior. Every day there comes a moment when one knows nothing productive will be accomplished the rest of the day - such came early for me on 4-8.
I see Dr. Abonour on 4-29. I will be back here a day or two thereafter. In the meantime, I will cough and sniffle. but not so much lately.
Incidentally, I just read that those who get too big for their pants will be exposed in the end.
I said in my 4-2 post that I would get back here the next week after getting Dr. Abonour's written evaluation of my MM - just noticed I said "hop" not "hope" in the last paragraph.
I didn't hop to it because I didn't get the written evaluation, still haven't. That may be due to my 5-8 experience with scheduled infusions.
I had a bad cold (is there a good cold) on 4-8. I was hooked up to the usual beginning saline infusion for about an hour waiting for Dr. Abonour to authorize proceeding with the chemo and steroid infusions. After reviewing again my most recent blood tests plus my current temp and BP, he gave the order to proceed. All in all, nearly three hours in the chair later, I escaped with a slight bruise from the needle in my arm, and a larger one unseen in my posterior. Every day there comes a moment when one knows nothing productive will be accomplished the rest of the day - such came early for me on 4-8.
I see Dr. Abonour on 4-29. I will be back here a day or two thereafter. In the meantime, I will cough and sniffle. but not so much lately.
Incidentally, I just read that those who get too big for their pants will be exposed in the end.
Thursday, April 2, 2015
Multiple Myeloma
4-2-15
Saw Dr. Abonour yesterday. He noted my Free Kappa/Lambda ratio had increased from 1.8 to 3.33 - the preferred range is .26 to 1.65 - but thought it was not enough out of preferred to change my current regimen, which is chemo & steroid for two Wednesdays, off a third, see him on the fourth. I should get his written report in a day or so, will be interested in how he will classify my disease. For those of you who follow this monthly, I will have an interim report late next week to tellyou what he says.
I don't have any symptoms to suggest I am better or worse. Thus, when Mary Ann and I drive to see him we don't know what to expect - we do know MM is not curable, but is treatable. We just hope for the latter if the remission fails. We go from month-to-month in limbo, so to speak. That's better, though, than having negative symptoms along the way.
I had a high temp reading early this morning. Awakened Mary Ann to find other thermometers, they read normal so no worry - probably had warm pipe smoke for the first. High temp is a no-no, am instructed to call Dr. Abonour whatever the hour. Pleased we didn't bother him.
I hear "you don't look like you have cancer" frequently. I suppose that is due to my not having apparent weight loss, and were I wearing a wig to hide hair loss, I surely would improve on my natural mop. Any fatigue that shows can be attributed to age, as it so often is by Dr. Abonour even though he knows MM does cause some of it. All in all, I continue with the thought that I am doing very well for my age, cancer notwithstanding.
I hop to get back here late next week.
Have a great Easter.
Saw Dr. Abonour yesterday. He noted my Free Kappa/Lambda ratio had increased from 1.8 to 3.33 - the preferred range is .26 to 1.65 - but thought it was not enough out of preferred to change my current regimen, which is chemo & steroid for two Wednesdays, off a third, see him on the fourth. I should get his written report in a day or so, will be interested in how he will classify my disease. For those of you who follow this monthly, I will have an interim report late next week to tellyou what he says.
I don't have any symptoms to suggest I am better or worse. Thus, when Mary Ann and I drive to see him we don't know what to expect - we do know MM is not curable, but is treatable. We just hope for the latter if the remission fails. We go from month-to-month in limbo, so to speak. That's better, though, than having negative symptoms along the way.
I had a high temp reading early this morning. Awakened Mary Ann to find other thermometers, they read normal so no worry - probably had warm pipe smoke for the first. High temp is a no-no, am instructed to call Dr. Abonour whatever the hour. Pleased we didn't bother him.
I hear "you don't look like you have cancer" frequently. I suppose that is due to my not having apparent weight loss, and were I wearing a wig to hide hair loss, I surely would improve on my natural mop. Any fatigue that shows can be attributed to age, as it so often is by Dr. Abonour even though he knows MM does cause some of it. All in all, I continue with the thought that I am doing very well for my age, cancer notwithstanding.
I hop to get back here late next week.
Have a great Easter.
Thursday, March 5, 2015
Multiple Myeloma
3-5-15
For my quick-read only followers, Dr. Abonour walked into the exam room yesterday, asked how I was, I said "you tell me", so he wrote "In Complete Remission" on my 3-2 blood test report and gave it to me. He noted specifically the Kappa/Lambda ratio (whatever that is) is excellent, as is my hemoglobin. A few of the test are outside recommended limits but are not crucial. Consequently, I need only two rather than three Wednesday infusions before I see him again on April 1 (we ought to have some fun with that date.) I should get back here on April 2 or 3. What follows is just commentary.
We did discuss briefly this blog. One or two of his patients have mentioned it, he didn't say favorably or not. Since the onset, there have been 9915 hits on this blog. I probably have a dozen or so consistent followers who have looked a few times, which leaves around 9,000 others. I suspect most got here by my title, Multiple Myeloma; I hope my "whatever will be, will be" thoughts have not offended those who have suffered more than I.
We didn't talk about feet which are the same, nor about fatigue since I refuse to give him another opportunity to ask how old I am. With regard to age and somewhat to fatigue, I have noticed
-during these snow days getting dressed to go out and undressed to return take as much energy as does the amount of shoveling I am capable of;
-I have to sit down to tie my shoes;
-putting on trousers takes longer since I need to lean against the wall for the second leg;
-same with socks;
-I listen about the same (Mary Ann says not always well) but I don't hear as well;
-I stagger a bit getting out of bed, still very early, never stagger getting in; ENOUGH.
Laura and I had a fine trip to Atlanta. She did most of the driving and made sure I had rest times. We had a nice lunch with my sister Jan and saw Whit play for Emory - they won and he got quite a few minutes. I was pleased with my first trip since MM.
Yesterday after the infusions following the visit with Dr. Abonour was a blah day. This morning, feeling good, ready for two or three "outings" before a nap and then dinner out tonight; probably no less than normal for my age.
I will be back in early April.
For my quick-read only followers, Dr. Abonour walked into the exam room yesterday, asked how I was, I said "you tell me", so he wrote "In Complete Remission" on my 3-2 blood test report and gave it to me. He noted specifically the Kappa/Lambda ratio (whatever that is) is excellent, as is my hemoglobin. A few of the test are outside recommended limits but are not crucial. Consequently, I need only two rather than three Wednesday infusions before I see him again on April 1 (we ought to have some fun with that date.) I should get back here on April 2 or 3. What follows is just commentary.
We did discuss briefly this blog. One or two of his patients have mentioned it, he didn't say favorably or not. Since the onset, there have been 9915 hits on this blog. I probably have a dozen or so consistent followers who have looked a few times, which leaves around 9,000 others. I suspect most got here by my title, Multiple Myeloma; I hope my "whatever will be, will be" thoughts have not offended those who have suffered more than I.
We didn't talk about feet which are the same, nor about fatigue since I refuse to give him another opportunity to ask how old I am. With regard to age and somewhat to fatigue, I have noticed
-during these snow days getting dressed to go out and undressed to return take as much energy as does the amount of shoveling I am capable of;
-I have to sit down to tie my shoes;
-putting on trousers takes longer since I need to lean against the wall for the second leg;
-same with socks;
-I listen about the same (Mary Ann says not always well) but I don't hear as well;
-I stagger a bit getting out of bed, still very early, never stagger getting in; ENOUGH.
Laura and I had a fine trip to Atlanta. She did most of the driving and made sure I had rest times. We had a nice lunch with my sister Jan and saw Whit play for Emory - they won and he got quite a few minutes. I was pleased with my first trip since MM.
Yesterday after the infusions following the visit with Dr. Abonour was a blah day. This morning, feeling good, ready for two or three "outings" before a nap and then dinner out tonight; probably no less than normal for my age.
I will be back in early April.
Thursday, February 5, 2015
2-5-15
Dr. Abonour and I had a minor disagreement yesterday: I asked, "still dormant", he replied "no, you are currently in remission" which is, of course better. I wondered how one with non-curable MM could be in remission, he said because all your blood tests so indicate at this time. I suppose I have to defer to him, but I am more than a little disturbed that I have to attribute my fatigue to age, which he has suggested with a smile for sometime now. Who's sorry now??
On a bit more serious note, and with no disrespect to others, I have thought, despite having cancer, I am much better health wise than many of my contemporaries. I continue to have foot problems, for which Dr. Abonour has just prescribed a drug which might help, and I do get tired, but, so what, I drive wherever I want to go, eat what I want, sleep (not for long but that may be because I think of getting to my reading and to this PC), and am, for example, planning a three day visit to Atlanta (with Laura) to see sister Jan and to see Whit play with the Emory basketball team - can't think of any place I would rather go.
I see Dr. Abonour next on March 4, so will get back to this soon thereafter. In the meantime, I will say "remission" even at the expense of those hearing that wanting to talk about something more important.
Whatever will be, will be.
Dr. Abonour and I had a minor disagreement yesterday: I asked, "still dormant", he replied "no, you are currently in remission" which is, of course better. I wondered how one with non-curable MM could be in remission, he said because all your blood tests so indicate at this time. I suppose I have to defer to him, but I am more than a little disturbed that I have to attribute my fatigue to age, which he has suggested with a smile for sometime now. Who's sorry now??
On a bit more serious note, and with no disrespect to others, I have thought, despite having cancer, I am much better health wise than many of my contemporaries. I continue to have foot problems, for which Dr. Abonour has just prescribed a drug which might help, and I do get tired, but, so what, I drive wherever I want to go, eat what I want, sleep (not for long but that may be because I think of getting to my reading and to this PC), and am, for example, planning a three day visit to Atlanta (with Laura) to see sister Jan and to see Whit play with the Emory basketball team - can't think of any place I would rather go.
I see Dr. Abonour next on March 4, so will get back to this soon thereafter. In the meantime, I will say "remission" even at the expense of those hearing that wanting to talk about something more important.
Whatever will be, will be.
Thursday, January 1, 2015
Multiple Myeloma
1-1-15
Good news yesterday: all the labs are within normal limits. The Kappa Chain reading which had been way outside normal decreased from 600+ to 5.5, well within the normal range of (3.3-19.4). So, my MM is dormant (my definition) which is as good as it can get since MM is not curable.
I will start another three week regimen on January 7, then see Dr. Abonour again on February 4. Good news about that, too, he is decreasing the steroid by 50% so the "up" and "down" should be less severe. No relief from fatigue nor apparently from troublesome feet, but I can live with those, literally. I don't know how long the regimens will continue.
Dr. Abonour, his chief nurse, and the nurses in the infusion room were delighted -me, too.
I hope there is good news for you as we begin a new year.
I will return here after February 4.
Good news yesterday: all the labs are within normal limits. The Kappa Chain reading which had been way outside normal decreased from 600+ to 5.5, well within the normal range of (3.3-19.4). So, my MM is dormant (my definition) which is as good as it can get since MM is not curable.
I will start another three week regimen on January 7, then see Dr. Abonour again on February 4. Good news about that, too, he is decreasing the steroid by 50% so the "up" and "down" should be less severe. No relief from fatigue nor apparently from troublesome feet, but I can live with those, literally. I don't know how long the regimens will continue.
Dr. Abonour, his chief nurse, and the nurses in the infusion room were delighted -me, too.
I hope there is good news for you as we begin a new year.
I will return here after February 4.
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