12-26-14
Wednesday 12/24
Despite having a needle inserted in my arm to allow extraction of enough blood to make room for saline, chemo, and steroid infusions, my posterior suffers most during the weekly regimen. I can stand a bit, but getting unhooked is the highlight of my day - getting out of the less than comfortable chair.
Thursday 12/25
Awakened early as usual with a slight steroid "up" heading into an enjoyable, napless, Christmas day. If memory serves, all 14 g/children, their parents, a husband, 3 significant others (2 missing because of conflicts) and 3 locales - should add to 29. Truly enjoyable to see all having a good time.
By 8 p.m. I was crashing. Made my way upstairs to the quiet floor, and had the longest uninterrupted sleep of recent times, maybe of ever - more than 6 hours.
Today 12/26
Notwithstanding the sleep, up and exhausted. Out and about for a couple of hours, back for lunch, brief nap, now this, and likely to have another nap.
On Monday I will drop off some blood for testing, and next Wednesday will see Dr. Abonour to hear the results, and to learn the next step in the treatment. I anticipate another three week regimen.
As ever, no difficult side effects other than fatigue and feet discomfort, and those have Mary Ann making certain I don't overdo which means I get pampered. Incidentally, she put on a great party here yesterday.
Late next week I will be back with the next steps.
Friday, December 26, 2014
Friday, December 19, 2014
Multiple Myeloma
12-19-14
Wednesday 12/17
30 minutes of chemo infusion, 30 minutes of steroid infusion, all the while with saline solution dripping along side - I read throughout. Well, almost all the time, for a few minutes while speaking with the pharmacist, they took enough blood to later report 37 tests were looking good - I was not aware they had taken the blood, apparently one gets oblivious of needles.
Home for a good nap, then dinner. No nausea, no pain, my "hotspot" was not hot, barely noticeable.
Thursday 12/18
Awakened early as usual, very energized, feeling good, no need for my usual early morning nap taken when normal folks are getting up. Mary Ann and I ran some errands and had lunch out. Back home and nap time, awakening two hours later not so energized. Around 5:00, crashed.- no energy. A bit of increased temp, so two tyelenol as suggested by Dr. Abonour, a light dinner, and was able to muddle about until 9:00, then off to bed.
Today 12/19
Awake at 1:30, exhausted, but unable to sleep, so early morning reading with coffee and pipe comfort. After reading the Star and breakfast, back to the couch, then dressed and here we are now.
Obvious to me that I had about 24 hours of up from the steroids, have been down now for more than 12 hours, and am hoping for "normal" fatigue to jump in soon. I intend to get out and about shortly, but no heavy lifting. Mary Ann having to feed the birds and take care of the trash, with Karen's help.
My third treatment is next Wednesday. Christmas Eve and Christmas Day may be a bit different for me this year. Unfortunately, much more difficult for Mary Ann even with my trying not to be a pain - I don't have pain but am a carrier.
I should be back here sometime next week. Whatever, I wish you a very great Christmas.
Wednesday 12/17
30 minutes of chemo infusion, 30 minutes of steroid infusion, all the while with saline solution dripping along side - I read throughout. Well, almost all the time, for a few minutes while speaking with the pharmacist, they took enough blood to later report 37 tests were looking good - I was not aware they had taken the blood, apparently one gets oblivious of needles.
Home for a good nap, then dinner. No nausea, no pain, my "hotspot" was not hot, barely noticeable.
Thursday 12/18
Awakened early as usual, very energized, feeling good, no need for my usual early morning nap taken when normal folks are getting up. Mary Ann and I ran some errands and had lunch out. Back home and nap time, awakening two hours later not so energized. Around 5:00, crashed.- no energy. A bit of increased temp, so two tyelenol as suggested by Dr. Abonour, a light dinner, and was able to muddle about until 9:00, then off to bed.
Today 12/19
Awake at 1:30, exhausted, but unable to sleep, so early morning reading with coffee and pipe comfort. After reading the Star and breakfast, back to the couch, then dressed and here we are now.
Obvious to me that I had about 24 hours of up from the steroids, have been down now for more than 12 hours, and am hoping for "normal" fatigue to jump in soon. I intend to get out and about shortly, but no heavy lifting. Mary Ann having to feed the birds and take care of the trash, with Karen's help.
My third treatment is next Wednesday. Christmas Eve and Christmas Day may be a bit different for me this year. Unfortunately, much more difficult for Mary Ann even with my trying not to be a pain - I don't have pain but am a carrier.
I should be back here sometime next week. Whatever, I wish you a very great Christmas.
Friday, December 12, 2014
Multiple Myeloma
12-12-14
I had intended to get to this yesterday (Thursday) after having started a new regimen on Wednesday, thinking that I would be able to report effects. The effects prevented me from getting here until now.
The regimen is a 30 minute infusion of chemo (Kyprolis) followed by a 30 minute infusion of steroid (Dexamethasone) neither of which were bothersome at the time. I was, though, more tired than usual and crawled into bed soon after 8pm.
Yesterday started as usual, awake very early with a "nap" about the time you normal folks are starting your day. In the afternoon as I thought about the blog, I began having temp increases. Since such is a warning sign, half-hour readings continued to rise and by evening I reached the trigger for action: 100.4. Mary Ann spoke with Dr. Abonour and he suggested Tylenol every two hours to see if the temp would come down to avoid an ER visit. That worked. Temp is now normal.
Today, however, I am exhausted, on the couch in my cave most of the time. I continue to be aware of the "hotspot" on my right, rearward, rib, but no severe pain as I have reported earlier. No hair loss. No nausea. No weight loss. I hope to continue avoiding the 30+ side effects noted for the Kyprolis.
I have two more Wednesday infusions, then an analysis, but likely a Wednesday off and then another three, proceeding on that schedule for who knows how long. Neither does anyone know if the effects these two days following the first regimen are likely to repeat, There is much wait and see in all this.
So, if nothing remarkable happens in the interim, I will get back here next week with an update.
Enjoy the season.
I had intended to get to this yesterday (Thursday) after having started a new regimen on Wednesday, thinking that I would be able to report effects. The effects prevented me from getting here until now.
The regimen is a 30 minute infusion of chemo (Kyprolis) followed by a 30 minute infusion of steroid (Dexamethasone) neither of which were bothersome at the time. I was, though, more tired than usual and crawled into bed soon after 8pm.
Yesterday started as usual, awake very early with a "nap" about the time you normal folks are starting your day. In the afternoon as I thought about the blog, I began having temp increases. Since such is a warning sign, half-hour readings continued to rise and by evening I reached the trigger for action: 100.4. Mary Ann spoke with Dr. Abonour and he suggested Tylenol every two hours to see if the temp would come down to avoid an ER visit. That worked. Temp is now normal.
Today, however, I am exhausted, on the couch in my cave most of the time. I continue to be aware of the "hotspot" on my right, rearward, rib, but no severe pain as I have reported earlier. No hair loss. No nausea. No weight loss. I hope to continue avoiding the 30+ side effects noted for the Kyprolis.
I have two more Wednesday infusions, then an analysis, but likely a Wednesday off and then another three, proceeding on that schedule for who knows how long. Neither does anyone know if the effects these two days following the first regimen are likely to repeat, There is much wait and see in all this.
So, if nothing remarkable happens in the interim, I will get back here next week with an update.
Enjoy the season.
Thursday, December 4, 2014
MM
12-4-14
For my quick read friends, this is an interim report: MM has returned with a vengeance, I don't have the treatment plan but should in a few days and will blog again. Now, the wordy version.
Last Friday following the bad news from Wednesday, I reached high above my head with my right arm and felt a sharp pain in my right side. Had no further indication until I arose from my seat in the movie later that evening and could barely walk - pain in side radiating throughout. Hit the couch at home with some relief, and did get some sleep Friday night.
I did not move around much on Saturday and Sunday and the severe pain of Friday evening did not recur. On Monday had the PET scan at Simon, had lunch out with MA, and did not move around much the rest of the day - still not severe pain.
Tuesday, the most painful day ever. Finally spoke with Dr. Abonour late that afternoon and he scheduled me in early Wednesday morning. Pain less severe but persisting. He immediately said I had irritated a "hot spot" which showed on the PET scan along with other spots around my body. He said he would schedule the treatment plan I mentioned in my last post - my response, I have done what he advised until then, so no reason to change.
In the interim, however, he sent me next door to the lab for a 60 minute steroid infusion, to which a nice nurse added a bit of pain killer. MA and I left for lunch - I was much relieved and ready for Kona Jacks.
Back to the couch at home, lying on a heating pad as I had previous days, napping frequently. One of my concerns was my reaction to steroids during my prior treatment plan - up for a day or so, next way down for two or three.
Today, not much noticeable up from yesterday, not much down today. We are hoping that the steroid infusion will not result in the up and down reactions.
Concerning the "spots" Dr. Abonour's nurse, with a bit of hesitation, said they were no more severe than when all this started. That, plus all the other positives gives us some hope for the future.
I will blog again when I get the treatment plan and understand it a bit better. I expect that to be sometime next week. I don't claim to look good but still don't look like I have cancer, whatever that means.
For my quick read friends, this is an interim report: MM has returned with a vengeance, I don't have the treatment plan but should in a few days and will blog again. Now, the wordy version.
Last Friday following the bad news from Wednesday, I reached high above my head with my right arm and felt a sharp pain in my right side. Had no further indication until I arose from my seat in the movie later that evening and could barely walk - pain in side radiating throughout. Hit the couch at home with some relief, and did get some sleep Friday night.
I did not move around much on Saturday and Sunday and the severe pain of Friday evening did not recur. On Monday had the PET scan at Simon, had lunch out with MA, and did not move around much the rest of the day - still not severe pain.
Tuesday, the most painful day ever. Finally spoke with Dr. Abonour late that afternoon and he scheduled me in early Wednesday morning. Pain less severe but persisting. He immediately said I had irritated a "hot spot" which showed on the PET scan along with other spots around my body. He said he would schedule the treatment plan I mentioned in my last post - my response, I have done what he advised until then, so no reason to change.
In the interim, however, he sent me next door to the lab for a 60 minute steroid infusion, to which a nice nurse added a bit of pain killer. MA and I left for lunch - I was much relieved and ready for Kona Jacks.
Back to the couch at home, lying on a heating pad as I had previous days, napping frequently. One of my concerns was my reaction to steroids during my prior treatment plan - up for a day or so, next way down for two or three.
Today, not much noticeable up from yesterday, not much down today. We are hoping that the steroid infusion will not result in the up and down reactions.
Concerning the "spots" Dr. Abonour's nurse, with a bit of hesitation, said they were no more severe than when all this started. That, plus all the other positives gives us some hope for the future.
I will blog again when I get the treatment plan and understand it a bit better. I expect that to be sometime next week. I don't claim to look good but still don't look like I have cancer, whatever that means.
Friday, November 21, 2014
Multiple Myeloma
11-21-14
MM is not curable; it is treatable, and I may be up for some more of that.
The offending blood test, Kappa Light Chains Free, which had shown improvement in September over August, was more out of normal in the blood draw earlier this week than it had been in August. Since, in layman's terms, the Kappa test has to do with fighting infections, a problem with MM, Dr. Abonour has ordered some additional testing the first week of December. One of those is a PET scan to see if any MM spots show.
If those tests so indicate, a return to treatment is planned. It will not be with Revlimid. It will be with Kyeprolis, which is still in the study phase but has shown some good results.
I started to read the info they gave me for Kyeprolis, quit when I saw all the possible side effects and that dexamethasone might be added - dex is a steroid I dislike. It doesn't make sense to worry about what might be until the effects are known. I did notice that I will again have to agree not to have unprotected sex - I don't know if that is to amuse the nurse instructing me or to give my "friends" another laugh.
Other than the Kappa test results, not much has changed. My fatigue is the same, and Dr. Abonour is quick to remind me of my age when that comes up. I seem to be having a bit more difficulty with my feet, but that may be more neurological than MM. No problems with kidney function, no weight loss, lousy sleep habits but not unusual for me. No memory change, which means I seldom have to wonder when in the shower if I have shampooed. I am a bit more irritable, but that, too, is likely to be age related.
None of the above is a surprise. We have known from the start that MM is not, as of today, curable. So, whatever will be continues to be what will be.
I should get back here late the first week of December or early the second.
Have a great Thanksgiving.
kb
MM is not curable; it is treatable, and I may be up for some more of that.
The offending blood test, Kappa Light Chains Free, which had shown improvement in September over August, was more out of normal in the blood draw earlier this week than it had been in August. Since, in layman's terms, the Kappa test has to do with fighting infections, a problem with MM, Dr. Abonour has ordered some additional testing the first week of December. One of those is a PET scan to see if any MM spots show.
If those tests so indicate, a return to treatment is planned. It will not be with Revlimid. It will be with Kyeprolis, which is still in the study phase but has shown some good results.
I started to read the info they gave me for Kyeprolis, quit when I saw all the possible side effects and that dexamethasone might be added - dex is a steroid I dislike. It doesn't make sense to worry about what might be until the effects are known. I did notice that I will again have to agree not to have unprotected sex - I don't know if that is to amuse the nurse instructing me or to give my "friends" another laugh.
Other than the Kappa test results, not much has changed. My fatigue is the same, and Dr. Abonour is quick to remind me of my age when that comes up. I seem to be having a bit more difficulty with my feet, but that may be more neurological than MM. No problems with kidney function, no weight loss, lousy sleep habits but not unusual for me. No memory change, which means I seldom have to wonder when in the shower if I have shampooed. I am a bit more irritable, but that, too, is likely to be age related.
None of the above is a surprise. We have known from the start that MM is not, as of today, curable. So, whatever will be continues to be what will be.
I should get back here late the first week of December or early the second.
Have a great Thanksgiving.
kb
Monday, October 6, 2014
Multiple Myeloma
10-6-14
Another off-schedule musing which you may be reading in late October or early November. But I want to comment about last evening while I remember some of it; were I to wait until much later, I would have forgotten what little I recall this morning.
Mary Ann and I attended the celebration last evening of the "Miles for Myeloma" bike ride. Led by Dr. Abonour, many riders rode 300 miles in three days, ending at the Scottish Rite Cathedral in downtown Indianapolis (I was tired just driving to the Cathedral.)
Hundreds attended the dinner, so many that we were siting too far from the podium and speakers to understand what was being said. We were at one of two tables otherwise occupied by family members of one Multiple Myeloma victim - many such family members were there.
In the "misery loves company" context, Mary Ann learned from the mother-in-law of the sufferer at the table next to ours that he has feet problems and is frequently too fatigued to work - I learned I am not a total wuss. We did not mention that my fatigue prevented golf from time-to-time - didn't seem pertinent.
Some of the sufferers did evidence the disease, primarily by inability to walk and by casts on broken bones. But, despite that, the crowd was amazingly up-beat. It was not an occasion of misery.
We were pleased we went.
I don't see Dr. Abonour until November 19. If you are hard up for reading, you might want to look here in the interim to see if I am hard up for writing.
Peace
Another off-schedule musing which you may be reading in late October or early November. But I want to comment about last evening while I remember some of it; were I to wait until much later, I would have forgotten what little I recall this morning.
Mary Ann and I attended the celebration last evening of the "Miles for Myeloma" bike ride. Led by Dr. Abonour, many riders rode 300 miles in three days, ending at the Scottish Rite Cathedral in downtown Indianapolis (I was tired just driving to the Cathedral.)
Hundreds attended the dinner, so many that we were siting too far from the podium and speakers to understand what was being said. We were at one of two tables otherwise occupied by family members of one Multiple Myeloma victim - many such family members were there.
In the "misery loves company" context, Mary Ann learned from the mother-in-law of the sufferer at the table next to ours that he has feet problems and is frequently too fatigued to work - I learned I am not a total wuss. We did not mention that my fatigue prevented golf from time-to-time - didn't seem pertinent.
Some of the sufferers did evidence the disease, primarily by inability to walk and by casts on broken bones. But, despite that, the crowd was amazingly up-beat. It was not an occasion of misery.
We were pleased we went.
I don't see Dr. Abonour until November 19. If you are hard up for reading, you might want to look here in the interim to see if I am hard up for writing.
Peace
Friday, October 3, 2014
Multiple Myeloma
10-3-14
I mentioned last week that I would report on Mary Ann's hip - this is it.
I took her in for an injection on Tuesday. On Wednesday, after having improved for days preceding the injection, the hip was more painful. Yesterday it was some better, today it is better, maybe where it was just prior to the injection. Since they said the improvement might take 4-5 days, we are hoping the next few days will bring further improvement.
Life goes on.
I mentioned last week that I would report on Mary Ann's hip - this is it.
I took her in for an injection on Tuesday. On Wednesday, after having improved for days preceding the injection, the hip was more painful. Yesterday it was some better, today it is better, maybe where it was just prior to the injection. Since they said the improvement might take 4-5 days, we are hoping the next few days will bring further improvement.
Life goes on.
Thursday, September 25, 2014
Multiple Myeloma
9-25-14
With a nod to my good friends who have no time nor inclination for the details, I have no need for chemo at this time. Parroting a famous Rabbi, all that follows is just commentary.
I (sans Mary Ann who was at home with a painful hip) walked in to see Dr. Abonour yesterday fully expecting to be put back on a chemo regimen. I did not expect an improvement in the blood test from August. There was a slight improvement but my reading continues to be well above normal. But that is but one of the tests, the Kappa Light Chains Free Ser mg/L which Dr. Abonour explained but which I have already forgotten. All the other tests were better than good, for example, for anemia, he said I was well above average in the lack thereof for my age.
Consequently, he not only saw no need for chemo, he decided I did not have to return until November, nor to give blood for testing prior to that return. Then we discussed my golf game - he refused to accept any responsibility for any poor performance on my part.
The fatigue and foot problems continue, but enough said about those.
This is my understanding: I have MM, always will have, but its under control. I have no bone pains, well I have some from time-to-time, but they are scattered and quick, for which Dr. Abonour has a smile and asks as he often does, what is your age.
In my immediately preceding post, I said I was not surprised but was disappointed. Yesterday I was not disappointed but was surprised - much better.
My next appointment is 11/19, after which I will post. For those of you who look at this nonsense more frequently, I will have an interim post late in October, if for no other reason than to report on my golf game.
I also will post within the next week to report on Mary Ann's hip problems. Those good friends i mentioned in my first paragraph will probably read all of that one.
Whatever will be, will be.
With a nod to my good friends who have no time nor inclination for the details, I have no need for chemo at this time. Parroting a famous Rabbi, all that follows is just commentary.
I (sans Mary Ann who was at home with a painful hip) walked in to see Dr. Abonour yesterday fully expecting to be put back on a chemo regimen. I did not expect an improvement in the blood test from August. There was a slight improvement but my reading continues to be well above normal. But that is but one of the tests, the Kappa Light Chains Free Ser mg/L which Dr. Abonour explained but which I have already forgotten. All the other tests were better than good, for example, for anemia, he said I was well above average in the lack thereof for my age.
Consequently, he not only saw no need for chemo, he decided I did not have to return until November, nor to give blood for testing prior to that return. Then we discussed my golf game - he refused to accept any responsibility for any poor performance on my part.
The fatigue and foot problems continue, but enough said about those.
This is my understanding: I have MM, always will have, but its under control. I have no bone pains, well I have some from time-to-time, but they are scattered and quick, for which Dr. Abonour has a smile and asks as he often does, what is your age.
In my immediately preceding post, I said I was not surprised but was disappointed. Yesterday I was not disappointed but was surprised - much better.
My next appointment is 11/19, after which I will post. For those of you who look at this nonsense more frequently, I will have an interim post late in October, if for no other reason than to report on my golf game.
I also will post within the next week to report on Mary Ann's hip problems. Those good friends i mentioned in my first paragraph will probably read all of that one.
Whatever will be, will be.
Wednesday, September 3, 2014
Multiple Myeloma
9-3-14
Since I said I would not get back here until 9/29. if you are reading this before then, you surely have better things to do, but I thank you for the interest.
I just learned that one of my blood tests is highly elevated, not good news. Since all else looks good, Dr. Abonour is not now suggesting treatment, but he wants me to return this month rather than wait until October. I will see him on the 29th.
In the meantime, unless I have negative symptoms, like increased fatigue. bone pain, or other problems, the nurse said not to worry. So, I said I was going to play golf tomorrow and I would worry about my swing rather than symptoms of MM. I'm now wondering if I can live up to that - maybe my score will tell.
A bit disappointing, but I have known from the first that MM is not curable, only treatable, so not a surprise.
Since I said I would not get back here until 9/29. if you are reading this before then, you surely have better things to do, but I thank you for the interest.
I just learned that one of my blood tests is highly elevated, not good news. Since all else looks good, Dr. Abonour is not now suggesting treatment, but he wants me to return this month rather than wait until October. I will see him on the 29th.
In the meantime, unless I have negative symptoms, like increased fatigue. bone pain, or other problems, the nurse said not to worry. So, I said I was going to play golf tomorrow and I would worry about my swing rather than symptoms of MM. I'm now wondering if I can live up to that - maybe my score will tell.
A bit disappointing, but I have known from the first that MM is not curable, only treatable, so not a surprise.
Thursday, August 28, 2014
Multiple Myeloma
8-28-14
Saw Dr. Abonour yesterday. The short report for those who (you know who you are) have choice comments when this blog is more than a paragraph or two is that I continue in remission without need for chemo. The long report follows.
When Dr. Abonour walked in the exam room with his beaming smile and asked how I was, Mary Ann and I knew the news was good. But we also knew that his written report in July which we received after my last blog was a bit less positive than the one last April - I asked why. He said one of the blood tests in July was not as positive, but not to worry - so I won't.
We still don't completely understand MM. We know it is not curable, but is treatable. Maybe the best explanation is that once one has MM, one always will have MM, but remission means it needs no treatment, no chemo, and that is my status.
Fatigue is a symptom. When Mary Ann and I described mine, Dr. Abonour decided to resume monthly testosterone shots, one of which I received yesterday. Before I hear the guffaws, I am quick to say that my shots are not to solve the problem the many radio and TV ads talk about. Mine are for the fatigue.
I continue to have feet discomfort, neuropathy My neurologist, Dr. French (he got me on the path to discover the MM) has prescribed ropinirole which has enabled me to sleep with the feet discomfort, the rest of the time I just live with lousy feet.
Which, to my pleasure, has not prohibited golf. I have now played 7 times in 2014, none unfortunately prior to my 82nd, but two of those subsequent resulted in "shooting my age." I did not accomplish that during age 81, partially I suppose due to lack of skill, but mainly because I did not play while 81. Some of the luster is diminished by my playing from shorter tees with oldsters like me, but, for you golfers, 6000 yards or less is enough at my age, and probably for yours.
I next see Dr. Abonour on October 29, after which I will return to this blog. But at the risk of boring you (you don't have to sign on) I will get back here after my September 29 shot. That is as much to be certain I know how as it is to report.
Leaving Dr. Abonour yesterday I said I thought I am if very good shape for my age, and he agreed. It may not be so, but my thinking so is probably good for my health. I hope you have good thoughts about yours, whatever your age.
Saw Dr. Abonour yesterday. The short report for those who (you know who you are) have choice comments when this blog is more than a paragraph or two is that I continue in remission without need for chemo. The long report follows.
When Dr. Abonour walked in the exam room with his beaming smile and asked how I was, Mary Ann and I knew the news was good. But we also knew that his written report in July which we received after my last blog was a bit less positive than the one last April - I asked why. He said one of the blood tests in July was not as positive, but not to worry - so I won't.
We still don't completely understand MM. We know it is not curable, but is treatable. Maybe the best explanation is that once one has MM, one always will have MM, but remission means it needs no treatment, no chemo, and that is my status.
Fatigue is a symptom. When Mary Ann and I described mine, Dr. Abonour decided to resume monthly testosterone shots, one of which I received yesterday. Before I hear the guffaws, I am quick to say that my shots are not to solve the problem the many radio and TV ads talk about. Mine are for the fatigue.
I continue to have feet discomfort, neuropathy My neurologist, Dr. French (he got me on the path to discover the MM) has prescribed ropinirole which has enabled me to sleep with the feet discomfort, the rest of the time I just live with lousy feet.
Which, to my pleasure, has not prohibited golf. I have now played 7 times in 2014, none unfortunately prior to my 82nd, but two of those subsequent resulted in "shooting my age." I did not accomplish that during age 81, partially I suppose due to lack of skill, but mainly because I did not play while 81. Some of the luster is diminished by my playing from shorter tees with oldsters like me, but, for you golfers, 6000 yards or less is enough at my age, and probably for yours.
I next see Dr. Abonour on October 29, after which I will return to this blog. But at the risk of boring you (you don't have to sign on) I will get back here after my September 29 shot. That is as much to be certain I know how as it is to report.
Leaving Dr. Abonour yesterday I said I thought I am if very good shape for my age, and he agreed. It may not be so, but my thinking so is probably good for my health. I hope you have good thoughts about yours, whatever your age.
Friday, July 4, 2014
Multiple Myeloma
7-4-14
I hope you are having a happy and healthy Independence Day.
Met with Dr. Abonour Wednesday afternoon. With the results from that day's blood tests in hand (only one test result was to come), he said he was pleased to tell us that my remission continues. When I suggested that I would wait to report with this blog until we had the final test result, he said "do as you wish, but if that final test indicates a problem, I will quit treating MM patients". So, I am blogging.
That brief but very positive discussion ended our talk about MM. The rest of our conversation was about fatigue, feet, and the non-MM drugs I take.
Re fatigue, he questioned my sleep (or lack thereof) habits and, though recognizing my penchant for early morning reading, had some good suggestions.
About the feet, although MM may contribute to my troubles, if it is neuropathy, not much can be done. He had suggestions if MM is contributing.
Since most of the other drugs I take are preventative but have dizziness as a possible side effect, he suggested I discontinue two and decrease one and he will test me when I see him next. Mary Ann and I like his attitude - take as few drugs as possible. Incidentally, he did not say being dizzy might be due to lack of sleep.
My next appointment with him is August 27. It would have been in September but no times were available which would enable Mary Ann and me to get to Kona Jacks for lunch after seeing him.
Being in stringent remission is as good as it gets. Seeing Dr. Abonour is a pleasure.
I don't anticipate getting back to this blog before the end of August. Maybe by then I will be able to report resumption of shooting my age - I failed to do so at age 81, possibly due to lack of skill but maybe more likely to having never played golf while 81. I am going to get back at it.
Whatever will be, will be, but, other than not having cancer, "will be" for me is most rewarding - I am blessed.
I hope you are having a happy and healthy Independence Day.
Met with Dr. Abonour Wednesday afternoon. With the results from that day's blood tests in hand (only one test result was to come), he said he was pleased to tell us that my remission continues. When I suggested that I would wait to report with this blog until we had the final test result, he said "do as you wish, but if that final test indicates a problem, I will quit treating MM patients". So, I am blogging.
That brief but very positive discussion ended our talk about MM. The rest of our conversation was about fatigue, feet, and the non-MM drugs I take.
Re fatigue, he questioned my sleep (or lack thereof) habits and, though recognizing my penchant for early morning reading, had some good suggestions.
About the feet, although MM may contribute to my troubles, if it is neuropathy, not much can be done. He had suggestions if MM is contributing.
Since most of the other drugs I take are preventative but have dizziness as a possible side effect, he suggested I discontinue two and decrease one and he will test me when I see him next. Mary Ann and I like his attitude - take as few drugs as possible. Incidentally, he did not say being dizzy might be due to lack of sleep.
My next appointment with him is August 27. It would have been in September but no times were available which would enable Mary Ann and me to get to Kona Jacks for lunch after seeing him.
Being in stringent remission is as good as it gets. Seeing Dr. Abonour is a pleasure.
I don't anticipate getting back to this blog before the end of August. Maybe by then I will be able to report resumption of shooting my age - I failed to do so at age 81, possibly due to lack of skill but maybe more likely to having never played golf while 81. I am going to get back at it.
Whatever will be, will be, but, other than not having cancer, "will be" for me is most rewarding - I am blessed.
Thursday, April 24, 2014
Multiple Myeloma
4-24-14
I have some good news and some bad news.
The good news: I am in stringent remission. You can google that but all I found is complicated: the best way to describe it is remission as good as it gets. Good enough that I am off the drug regimen and don't see Dr. Abonour again until July 2 for blood tests which he expects will continue to be excellent.
Getting off the revlimid should result is less fatigue.
He also suggested that I exercise to lessen the feet discomfort. Walking is still a bit uncomfortable, biking is much better. That should result in better circulation, hence less feet discomfort.
The bad news: I am apparently destined to admitting that whatever fatigue and discomfort I continue to have is due to age. Plus, I will have no reason not to mow the lawn, nor to say shooting my age stopped because of MM. Damn - no more sympathy.
Of course, Mary Ann and I were delighted with the news, she probably more than me - having "whatever will be, will be" attitude has not been as easy for her. Dr. Abonour and his nurse assistant also were pleased to be able to give us the good news. I wondered aloud if they were tired of my questions - they denied!
So, since MM is not curable but treatable, when is it likely to reappear in the blood tests? Dr. Abonour does not know, but he said it could be years hence. He did say, if the July tests are as he expects them to be, I might not have to see him for three, rather than two, months.
I appreciate the interest and concern many of you have expressed with your best wishes. I don't expect to again bother you with this blog until early July.
In the interim, I wish the very best for you.
I have some good news and some bad news.
The good news: I am in stringent remission. You can google that but all I found is complicated: the best way to describe it is remission as good as it gets. Good enough that I am off the drug regimen and don't see Dr. Abonour again until July 2 for blood tests which he expects will continue to be excellent.
Getting off the revlimid should result is less fatigue.
He also suggested that I exercise to lessen the feet discomfort. Walking is still a bit uncomfortable, biking is much better. That should result in better circulation, hence less feet discomfort.
The bad news: I am apparently destined to admitting that whatever fatigue and discomfort I continue to have is due to age. Plus, I will have no reason not to mow the lawn, nor to say shooting my age stopped because of MM. Damn - no more sympathy.
Of course, Mary Ann and I were delighted with the news, she probably more than me - having "whatever will be, will be" attitude has not been as easy for her. Dr. Abonour and his nurse assistant also were pleased to be able to give us the good news. I wondered aloud if they were tired of my questions - they denied!
So, since MM is not curable but treatable, when is it likely to reappear in the blood tests? Dr. Abonour does not know, but he said it could be years hence. He did say, if the July tests are as he expects them to be, I might not have to see him for three, rather than two, months.
I appreciate the interest and concern many of you have expressed with your best wishes. I don't expect to again bother you with this blog until early July.
In the interim, I wish the very best for you.
Tuesday, April 15, 2014
Multiple Myeloma
4-15-14
Haven't had much to say lately, not enough to bother you with. But I have just received word from the Doc. regarding the blood deposit of a few weeks ago: "everything has improved" whatever that means. I suspect, though, as I have mentioned, they have me in remission and have others with more problems than I.
I did tell them I seem to be a bit shaky for 15-20 minutes after getting up in the morning. They said to get up 15-20 minutes later. (That is 4th century humor - did you smile?)
I have suffered from rather extreme fatigue lately, almost fell asleep during the sermon last Sunday, and it was a good sermon. Reminded me of the days Dad had that problem, so he skipped church after Sunday School to go home to prepare dinner - fortunately we drive to church so I had to wait to take Mary Ann home.
I am in the middle of a two week "on" period. I see Dr. Abonour on 4-23, after another lab report. Maybe I will know more then about where I am in the scheme of things.
I hope this date is not a bad one for you.
Haven't had much to say lately, not enough to bother you with. But I have just received word from the Doc. regarding the blood deposit of a few weeks ago: "everything has improved" whatever that means. I suspect, though, as I have mentioned, they have me in remission and have others with more problems than I.
I did tell them I seem to be a bit shaky for 15-20 minutes after getting up in the morning. They said to get up 15-20 minutes later. (That is 4th century humor - did you smile?)
I have suffered from rather extreme fatigue lately, almost fell asleep during the sermon last Sunday, and it was a good sermon. Reminded me of the days Dad had that problem, so he skipped church after Sunday School to go home to prepare dinner - fortunately we drive to church so I had to wait to take Mary Ann home.
I am in the middle of a two week "on" period. I see Dr. Abonour on 4-23, after another lab report. Maybe I will know more then about where I am in the scheme of things.
I hope this date is not a bad one for you.
Thursday, March 13, 2014
Multiple Myeloma
3-13-14
Received a favorable report from the lab tests of my blood on Tuesday so started another routine two weeks on drugs last night. Today, useless, too tired to do anything although I did get to the SSA office this morning and have to see my dental surgeon friend this afternoon. Getting back on the drugs seems to take a bit out of me, and there are not too many bits to be taken.
I did not see Dr. Abonour during the latest off drugs period. The bad news is we don't have an opportunity to ask questions; the good news is he must believe I am doing as well as possible. Since I still enjoy getting out of bed as much as getting into bed, so be it.
I will, however, see him after this two on weeks, maybe will have something more to report. Re fatigue, I suspect he will nod and smile, and tell me to muddle along, and eat more fruit.
I am also tired of the lousy weather - a bit more Spring might help.
Received a favorable report from the lab tests of my blood on Tuesday so started another routine two weeks on drugs last night. Today, useless, too tired to do anything although I did get to the SSA office this morning and have to see my dental surgeon friend this afternoon. Getting back on the drugs seems to take a bit out of me, and there are not too many bits to be taken.
I did not see Dr. Abonour during the latest off drugs period. The bad news is we don't have an opportunity to ask questions; the good news is he must believe I am doing as well as possible. Since I still enjoy getting out of bed as much as getting into bed, so be it.
I will, however, see him after this two on weeks, maybe will have something more to report. Re fatigue, I suspect he will nod and smile, and tell me to muddle along, and eat more fruit.
I am also tired of the lousy weather - a bit more Spring might help.
Thursday, February 27, 2014
Multiple Myeloma
2-27-14
Started another two weeks off drugs yesterday. I keep hoping I will be less tired during an off week - hate to think the fatigue is all due to age.
I did receive since my last post highlights from my last lab results. Of the many tests listed, three are in the red, which is outside normal. Two of those are in the "Light Chains" section, both of which I believe are significant. But, my disease is described "in complete remission/near complete remission" which is the best choice listed, so I continue to be encouraged.
Next Monday Mary Ann and I will attend a seminar on MM conducted by Dr. Abonour. I may get a chance to ask about the "Light Chains."
I will give blood for testing sometime next week. Then, on March 12, start another two weeks on the drugs. I am not scheduled to see Dr. Abonour until April 23. That may be incorrect since it would be during another two weeks on drugs - I need to ask about that.
I continue to have feet discomfort, mainly when lying down. That my be my body saying "get with it."
I have had enough cold and snow.
Started another two weeks off drugs yesterday. I keep hoping I will be less tired during an off week - hate to think the fatigue is all due to age.
I did receive since my last post highlights from my last lab results. Of the many tests listed, three are in the red, which is outside normal. Two of those are in the "Light Chains" section, both of which I believe are significant. But, my disease is described "in complete remission/near complete remission" which is the best choice listed, so I continue to be encouraged.
Next Monday Mary Ann and I will attend a seminar on MM conducted by Dr. Abonour. I may get a chance to ask about the "Light Chains."
I will give blood for testing sometime next week. Then, on March 12, start another two weeks on the drugs. I am not scheduled to see Dr. Abonour until April 23. That may be incorrect since it would be during another two weeks on drugs - I need to ask about that.
I continue to have feet discomfort, mainly when lying down. That my be my body saying "get with it."
I have had enough cold and snow.
Thursday, February 13, 2014
Multiple Myeloma
2-13-14
Had a good, and short, visit with Dr. Abonour and staff yesterday. Not all blood test results were available when Mary Ann and I left, but Dr. Abonour said I continue to be in remission. He also said that after another two or three "two weeks on, two weeks off" regimen, I probably would be "off" for a longer period with regular but less frequent testing. All in all, very good news, and I began an "on" period last evening.
I got some smiles from him and the nurse sitting in: when I lamented that I was no longer the most famous MM sufferer i.e. Tom Brokaw; when I wondered if my fatigue was due more to age and weather than disease and treatment therefor (he suggested, and the nurse nodded, that I should keep going to Tracy for physical therapy and add some exercise on my own); when I mentioned "light headed" and mused that the pipe might often be the cause (he did not even hint that I should quit, probably thinking it would be a wasted of his words); and when I wondered if he could prescribe a trip to the Caymans.
In no way did we feel he was hurrying us along, but we got the message - he has more critical patients with whom to deal.
I may not get back here for a couple of weeks - seems foolish to keep saying all is as well as could be expected. I know cure is not in the future, but control is, and that is enough. I have had thoughts with which to enliven this blog, like, is ours the only house not warm enough in the winter and too warm in the summer without touching the thermostat, but I won't bother you readers with such non MM matters, except: I have been trying to understand quantum computers and, in connection with the Wednesday group of which I am the iconoclast, who was Jesus, and the understanding of the first is more likely to come before understanding the second.
I hope as you read this, you are as healthy as I, age adjusted.
.
Had a good, and short, visit with Dr. Abonour and staff yesterday. Not all blood test results were available when Mary Ann and I left, but Dr. Abonour said I continue to be in remission. He also said that after another two or three "two weeks on, two weeks off" regimen, I probably would be "off" for a longer period with regular but less frequent testing. All in all, very good news, and I began an "on" period last evening.
I got some smiles from him and the nurse sitting in: when I lamented that I was no longer the most famous MM sufferer i.e. Tom Brokaw; when I wondered if my fatigue was due more to age and weather than disease and treatment therefor (he suggested, and the nurse nodded, that I should keep going to Tracy for physical therapy and add some exercise on my own); when I mentioned "light headed" and mused that the pipe might often be the cause (he did not even hint that I should quit, probably thinking it would be a wasted of his words); and when I wondered if he could prescribe a trip to the Caymans.
In no way did we feel he was hurrying us along, but we got the message - he has more critical patients with whom to deal.
I may not get back here for a couple of weeks - seems foolish to keep saying all is as well as could be expected. I know cure is not in the future, but control is, and that is enough. I have had thoughts with which to enliven this blog, like, is ours the only house not warm enough in the winter and too warm in the summer without touching the thermostat, but I won't bother you readers with such non MM matters, except: I have been trying to understand quantum computers and, in connection with the Wednesday group of which I am the iconoclast, who was Jesus, and the understanding of the first is more likely to come before understanding the second.
I hope as you read this, you are as healthy as I, age adjusted.
.
Wednesday, January 22, 2014
Multiple Myeloma
1-22-14
I haven't been to this page recently, partially because nothing new to report re MM, but also because Google "improved" Blogger to the extent that I could not access this page,
I am in the middle of a "two-week on" of MM meds, the result of which is, as before, tiring (I continue to attribute fatigue to meds, not age). I will start another "on" period before I see Dr. Abonour on 2/19 when I will get an update on remission and plan for the future.
I had some flu symptoms last week, coughing, sneezing, and increasing temps. Since the temps are of concern for MM, Dr. Abonour's nurse immediately prescribed two additional pills which caused the temps to get back to normal and me to feel lousy. Fortunately, I have finished those additions.
Mary Ann had a back shot and is now into physical therapy, both of which seem to be helping.
Have I mentioned that my shirts come back from the laundry with smaller button holes?
I haven't been to this page recently, partially because nothing new to report re MM, but also because Google "improved" Blogger to the extent that I could not access this page,
I am in the middle of a "two-week on" of MM meds, the result of which is, as before, tiring (I continue to attribute fatigue to meds, not age). I will start another "on" period before I see Dr. Abonour on 2/19 when I will get an update on remission and plan for the future.
I had some flu symptoms last week, coughing, sneezing, and increasing temps. Since the temps are of concern for MM, Dr. Abonour's nurse immediately prescribed two additional pills which caused the temps to get back to normal and me to feel lousy. Fortunately, I have finished those additions.
Mary Ann had a back shot and is now into physical therapy, both of which seem to be helping.
Have I mentioned that my shirts come back from the laundry with smaller button holes?
Friday, January 10, 2014
Multiple Myeloma
1-10-14
Today is Mary Ann's birthday. I gave her a new furnace filter, which does not fit, and took her to lunch, which was good. She had a shot for back pain a day or so ago, should know soon if it helped. Kim, nephew in England, sent her eye drops not available in U.S. and they are helping - may have to go there to get more; she was most pleased he thought of helping her.
I am as last reported, whatever that is.
I just read that the first testicular guard, the Cup, was used in hockey in 1874 and the first helmet for football was used in 1974 - only took men 100 years to realize their brains were also important.
Today is Mary Ann's birthday. I gave her a new furnace filter, which does not fit, and took her to lunch, which was good. She had a shot for back pain a day or so ago, should know soon if it helped. Kim, nephew in England, sent her eye drops not available in U.S. and they are helping - may have to go there to get more; she was most pleased he thought of helping her.
I am as last reported, whatever that is.
I just read that the first testicular guard, the Cup, was used in hockey in 1874 and the first helmet for football was used in 1974 - only took men 100 years to realize their brains were also important.
Tuesday, January 7, 2014
Multiple Myeloma
1-7-14
Just realized I had not written since last year. I haven't had much to report re MM - thought about commenting on social issues and politics but decided you would not want to waste time being irritated with my views.
My feet are not causing as much discomfort, I seldom notice them except when sleeping, or trying to sleep. I believe my fatigue is lessening somewhat. I start another two week regimen next week, then see Dr. Abonour on 2-19. I expect to hear that remission continues.
To keep things interesting, I had what I think was a urinary infection a few days back. I tracked my urologist to Seattle where he was trying to vacation. He prescribed an antibiotic which apparently has helped and I will see him next week to be certain.
We have had more snow here than we can deal with, then bitter cold which tonight is supposed to ease a bit. I don't recall such a combination in the past, but that could be my ability to forget misery.
I hope your New Year is off to a great start.
Just realized I had not written since last year. I haven't had much to report re MM - thought about commenting on social issues and politics but decided you would not want to waste time being irritated with my views.
My feet are not causing as much discomfort, I seldom notice them except when sleeping, or trying to sleep. I believe my fatigue is lessening somewhat. I start another two week regimen next week, then see Dr. Abonour on 2-19. I expect to hear that remission continues.
To keep things interesting, I had what I think was a urinary infection a few days back. I tracked my urologist to Seattle where he was trying to vacation. He prescribed an antibiotic which apparently has helped and I will see him next week to be certain.
We have had more snow here than we can deal with, then bitter cold which tonight is supposed to ease a bit. I don't recall such a combination in the past, but that could be my ability to forget misery.
I hope your New Year is off to a great start.
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