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.
Wednesday, September 9, 2015
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.
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