9-29-13
Recovered well from the regimen start-up and had a really good day today. About the only evidence of my cancer on a day like today is my uneven walking - I don't walk a straight line.
Made it to church and brunch, then watched too much football, didn't get my usual nap, but I am still awake and reasonably alert. We will see what tomorrow brings.
Sunday, September 29, 2013
Saturday, September 28, 2013
Multiple Myeloma
9-28-13
Following yesterday's start-up, today was not one of my better days. After a restless night, I staggered about most of the day, did not have an appetite, and was mostly useless. I went back through the blog (not recommended) and found the day after the start-up has before been less than delightful. At least I was not zombie like as I am crashing from the steroid hits.
Tomorrow will be better.
Following yesterday's start-up, today was not one of my better days. After a restless night, I staggered about most of the day, did not have an appetite, and was mostly useless. I went back through the blog (not recommended) and found the day after the start-up has before been less than delightful. At least I was not zombie like as I am crashing from the steroid hits.
Tomorrow will be better.
Multiple Myeloma
9-28-13
After a rather pleasant recess, yesterday began another 21 day regimen of revlimid with a few dexamethasone (steroid) hits along the way. Since the last regimen resulted in the favorable results I mentioned earlier, I wondered aloud with Dr. Milton if we might decrease the steroid hit - no such luck. He did give me some scheduling alternatives, but somewhere along the way I expect some days will have me appearing drunk and zombie like, which some of my "good" friends have wondered how to notice the difference. Incidentally, there was no hint by the good doctor as to when, or even if, the regimens might stop for a while, although he did say we probably could go to Rome or some such place in the future without taking more pills than clothes.
I do hope to add, better, to subtract, from these musings. Being tired and having numb feet is a given, and (I haven't read back to check) mentioned often if not always. I see no reason to clutter this message with givens, so, unless there is a substantial change in either, no more about feet nor tired. I do recognize, as others remind me, that the latter might be as much due to age!
Further, although I am not much inclined for mind over matter, belief over fact, I have noticed that I forget feet and tired when I am busy doing something other than sitting on the front porch - maybe, despite a bit of embarrassment, I just use both to enjoy having my neighbor across the street blow away my leaves since she does a better job of it than I do.
After a rather pleasant recess, yesterday began another 21 day regimen of revlimid with a few dexamethasone (steroid) hits along the way. Since the last regimen resulted in the favorable results I mentioned earlier, I wondered aloud with Dr. Milton if we might decrease the steroid hit - no such luck. He did give me some scheduling alternatives, but somewhere along the way I expect some days will have me appearing drunk and zombie like, which some of my "good" friends have wondered how to notice the difference. Incidentally, there was no hint by the good doctor as to when, or even if, the regimens might stop for a while, although he did say we probably could go to Rome or some such place in the future without taking more pills than clothes.
I do hope to add, better, to subtract, from these musings. Being tired and having numb feet is a given, and (I haven't read back to check) mentioned often if not always. I see no reason to clutter this message with givens, so, unless there is a substantial change in either, no more about feet nor tired. I do recognize, as others remind me, that the latter might be as much due to age!
Further, although I am not much inclined for mind over matter, belief over fact, I have noticed that I forget feet and tired when I am busy doing something other than sitting on the front porch - maybe, despite a bit of embarrassment, I just use both to enjoy having my neighbor across the street blow away my leaves since she does a better job of it than I do.
Tuesday, September 24, 2013
Multiple Myeloma
9-24-13
Back when this all started with numbness in my feet, Dr. French, neurologist, saw a unusual protein level in my blood. He immediately referred me to Dr. Milton, an oncologist with Hematology-Oncology of Indiana (HOI). Dr. Milton had me tested for bone myeloma and bone marrow myeloma, both negative. Finally, a PET scan (whatever that is) revealed the multiple myeloma. In other words, my MM was difficult to diagnose and unusual.
This afternoon Mary Ann and I met with Dr. Milton to hear the results of the third 21 day regimen of revlimid and dexamethasone. The results are remarkable. I can't give the technical explanation, suffice it to say the high negative levels have decreased considerably, really considerably.
As soon as I can get another 21 days of revlimid, I will start another regimen. There is no need for an interim blood test, just for the labs again on October 17 prior to seeing Dr. Milton again on October 22.
The tiredness will continue but may get less severe. The up and down from dexamethasone (steroid) will not ease, but considering the above results, so be it.
Dr. Milton is pleased, so are we.
Back when this all started with numbness in my feet, Dr. French, neurologist, saw a unusual protein level in my blood. He immediately referred me to Dr. Milton, an oncologist with Hematology-Oncology of Indiana (HOI). Dr. Milton had me tested for bone myeloma and bone marrow myeloma, both negative. Finally, a PET scan (whatever that is) revealed the multiple myeloma. In other words, my MM was difficult to diagnose and unusual.
This afternoon Mary Ann and I met with Dr. Milton to hear the results of the third 21 day regimen of revlimid and dexamethasone. The results are remarkable. I can't give the technical explanation, suffice it to say the high negative levels have decreased considerably, really considerably.
As soon as I can get another 21 days of revlimid, I will start another regimen. There is no need for an interim blood test, just for the labs again on October 17 prior to seeing Dr. Milton again on October 22.
The tiredness will continue but may get less severe. The up and down from dexamethasone (steroid) will not ease, but considering the above results, so be it.
Dr. Milton is pleased, so are we.
Sunday, September 22, 2013
Multiple Myeloma
9-22-13
But for the start and finish, yesterday was a good day.
The start was marred by Karen's having to take Mary Ann to the ER to deal with her swollen throat to the extent that she could not talk. Apparently she had a reaction to a new script. ER treatment was successful, they returned home, and Mary Ann was able to catch up with sleep lost during the night.
The finish wasn't really bad, it should have been expected. After the activity described below, as I drove into the garage, I realized I needed to get to bed - almost too tired to get into the house. So, to bed I went.
In the interim, Mary Ann and I were able to get to Meridian Hills to wish a happy 90th birthday to Frank Swingle. We didn't stay long but we were able to say hello to his family (a special group for us), and to others there to honor him.
We then decided to dine out, a rare event for us these days - enjoyed a fine meal, saw Jay, another special friend.
MM is a different form of cancer, not obvious to an observer. When I am reasonably mobile and not wobbling due to feet numbness, observers with surprise see me as no different from before the diagnosis and treatment (tired is hard to see.) Jay expressed it well, saying I looked normal. He made sure I understood that didn't mean "good", just normal. I suppose normal is better than sick.
Whatever will be, will be.
But for the start and finish, yesterday was a good day.
The start was marred by Karen's having to take Mary Ann to the ER to deal with her swollen throat to the extent that she could not talk. Apparently she had a reaction to a new script. ER treatment was successful, they returned home, and Mary Ann was able to catch up with sleep lost during the night.
The finish wasn't really bad, it should have been expected. After the activity described below, as I drove into the garage, I realized I needed to get to bed - almost too tired to get into the house. So, to bed I went.
In the interim, Mary Ann and I were able to get to Meridian Hills to wish a happy 90th birthday to Frank Swingle. We didn't stay long but we were able to say hello to his family (a special group for us), and to others there to honor him.
We then decided to dine out, a rare event for us these days - enjoyed a fine meal, saw Jay, another special friend.
MM is a different form of cancer, not obvious to an observer. When I am reasonably mobile and not wobbling due to feet numbness, observers with surprise see me as no different from before the diagnosis and treatment (tired is hard to see.) Jay expressed it well, saying I looked normal. He made sure I understood that didn't mean "good", just normal. I suppose normal is better than sick.
Whatever will be, will be.
Saturday, September 21, 2013
Multiple Myeloma
9-21-13
This is an attempt to update this blog for the past three days. Unfortunately, that requires long term memory, with which I have difficulty, but so be it.
But for some unsteady walking, by Wednesday I felt free from the steroid crash and had lunch with three good friends, a gathering I hope can continue in the future. I returned home and had the longest and deepest nap I can recall. I awoke with what I can only describe as "blahs" - not very pleasant. I did at dinner finish off the third 21 day regimen.
Thursday and Friday were both blah days - bad enough that I could not drive. Mary Ann took me to the Dr.'s office on Friday afternoon, where I gave the blood for tests we will discuss with Dr. Milton next Tuesday. The routine tests, oxygen, blood pressure, temperature, and pulse were excellent. Compared to many there, I looked the picture of health - not a pretty picture but s healthy one.
Now early Saturday morning, the blahs seem to have gone, and I am hoping to be able this evening to attend a 90th birthday party for Frank Swingle. Frank has been a good friend and often a good adviser for my activities at Meridian Hills.
I don't know the extent to which the blahs of recent days can be attributed to my treatments, to having been off the regimen since Wednesday. Maybe we will know more on Tuesday.
This is an attempt to update this blog for the past three days. Unfortunately, that requires long term memory, with which I have difficulty, but so be it.
But for some unsteady walking, by Wednesday I felt free from the steroid crash and had lunch with three good friends, a gathering I hope can continue in the future. I returned home and had the longest and deepest nap I can recall. I awoke with what I can only describe as "blahs" - not very pleasant. I did at dinner finish off the third 21 day regimen.
Thursday and Friday were both blah days - bad enough that I could not drive. Mary Ann took me to the Dr.'s office on Friday afternoon, where I gave the blood for tests we will discuss with Dr. Milton next Tuesday. The routine tests, oxygen, blood pressure, temperature, and pulse were excellent. Compared to many there, I looked the picture of health - not a pretty picture but s healthy one.
Now early Saturday morning, the blahs seem to have gone, and I am hoping to be able this evening to attend a 90th birthday party for Frank Swingle. Frank has been a good friend and often a good adviser for my activities at Meridian Hills.
I don't know the extent to which the blahs of recent days can be attributed to my treatments, to having been off the regimen since Wednesday. Maybe we will know more on Tuesday.
Tuesday, September 17, 2013
Multiple Myeloma
9-17-13
Yesterday, day two of the steroid crash, was as expected, a washout. About all I wanted to do, about all I did, was crawl into a warm bed and sleep.
Today, much better. Mary Ann drove to Costco and I survived that experience, the shopping, that is.
Tomorrow, lunch out with three good friends, an outing I enjoy. Tomorrow evening, I end this 21 day regimen, Friday unload blood, and next Tuesday, see Dr. Milton.
Someone once said the sickness of the body may prove the health of the mind - we can always hope.
Yesterday, day two of the steroid crash, was as expected, a washout. About all I wanted to do, about all I did, was crawl into a warm bed and sleep.
Today, much better. Mary Ann drove to Costco and I survived that experience, the shopping, that is.
Tomorrow, lunch out with three good friends, an outing I enjoy. Tomorrow evening, I end this 21 day regimen, Friday unload blood, and next Tuesday, see Dr. Milton.
Someone once said the sickness of the body may prove the health of the mind - we can always hope.
Sunday, September 15, 2013
Multiple Myeloma
9-15-13
Yesterday, Saturday, after the steroid hit on Friday, was a good day. Mary Ann and I stopped by the farmers market, drove to Columbus to see the Stroh renovation, had lunch at the well known ice cream parlor, and were back home in time for a good nap. Then, the crash began.
This morning I am walking slowly, a bit fuzzy headed (which might be obvious) and expect to stay close to the couch all day. This 21 day regimen ends Wednesday, labs and another steroid hit on Friday, and visit with Dr. Milton next Tuesday.
As an aside, I heard yesterday that the most shop-lifted book in the U.S. is the Bible. Considering that all the surveys I have seen recently say most of us have a Bible but few of us read it, I wonder where the stolen copies go.
Yesterday, Saturday, after the steroid hit on Friday, was a good day. Mary Ann and I stopped by the farmers market, drove to Columbus to see the Stroh renovation, had lunch at the well known ice cream parlor, and were back home in time for a good nap. Then, the crash began.
This morning I am walking slowly, a bit fuzzy headed (which might be obvious) and expect to stay close to the couch all day. This 21 day regimen ends Wednesday, labs and another steroid hit on Friday, and visit with Dr. Milton next Tuesday.
As an aside, I heard yesterday that the most shop-lifted book in the U.S. is the Bible. Considering that all the surveys I have seen recently say most of us have a Bible but few of us read it, I wonder where the stolen copies go.
Friday, September 13, 2013
Multiple Myeloma
9-13-13
Apparently I cannot predict the ups and downs from the steroid hits from one week to the next.
Last Friday we were in Wabash, having dinner with the Matterns and I was doing well. On Saturday we met with Mary Ann's classmates for lunch, again I was doing well. Sunday and Monday I crashed, Tuesday, after those two days, I was back to "normal" (whatever that is) and had a brief visit with my derm Doc to see if I need any zaps - I didn't. I had lunch out, back home for my afternoon nap. Then, Wed. and Thur. I was back into crash mode, not so severe, but not normal - my feet were bothering me more than they had for sometime.
This morning I took the steroid hit for this week. The up seems to be happening, and tomorrow might again be a good day, but I am not making any plans - as I have often said, whatever will be, will be.
I see the surprise on the faces of those who know I have MM but when seeing me for the first time notice that I don't look sick - not that I look good, that is another matter, but not sick. I often have to explain that I stagger a bit due to the feet problem, and I am very tired - but those in my age bracket often say, well of course.
I will report tomorrow if the day after the hit results, as it has in the past, in a good day. I am certain it will not be good enough to work in the yard, but we might get out and about for a few hours. I am also certain I would be a lousy caregiver, and I don't know how Mary Ann does it.
Apparently I cannot predict the ups and downs from the steroid hits from one week to the next.
Last Friday we were in Wabash, having dinner with the Matterns and I was doing well. On Saturday we met with Mary Ann's classmates for lunch, again I was doing well. Sunday and Monday I crashed, Tuesday, after those two days, I was back to "normal" (whatever that is) and had a brief visit with my derm Doc to see if I need any zaps - I didn't. I had lunch out, back home for my afternoon nap. Then, Wed. and Thur. I was back into crash mode, not so severe, but not normal - my feet were bothering me more than they had for sometime.
This morning I took the steroid hit for this week. The up seems to be happening, and tomorrow might again be a good day, but I am not making any plans - as I have often said, whatever will be, will be.
I see the surprise on the faces of those who know I have MM but when seeing me for the first time notice that I don't look sick - not that I look good, that is another matter, but not sick. I often have to explain that I stagger a bit due to the feet problem, and I am very tired - but those in my age bracket often say, well of course.
I will report tomorrow if the day after the hit results, as it has in the past, in a good day. I am certain it will not be good enough to work in the yard, but we might get out and about for a few hours. I am also certain I would be a lousy caregiver, and I don't know how Mary Ann does it.
Thursday, September 12, 2013
Multiple Myeloma
9-12-13
Strange day yesterday (Wed.) On Tuesday I had (I thought) recovered from the downtime resulting from the steroids, so I decided I would join the Wednesday group. I made a few stops and arrived a bit before 9:30. By 10:30 I felt like I was back in the steroid downtime, fuzzy headed, feet bothersome, and more tired than normal. That continued until bedtime.
This morning (Thursday) for the first time in all of this process, when I awakened, I lay in bed for a few minutes wondering what the day would bring. Although the day has not begun for sensible people, I have been up for a couple of hours, still wondering what the day will bring. Since I attribute how I feel somewhat to attitude (mind) I am taking this day an hour at a time, slowly, to see if I will avoid another downtime reaction. Tomorrow, back to the steroids!
Strange day yesterday (Wed.) On Tuesday I had (I thought) recovered from the downtime resulting from the steroids, so I decided I would join the Wednesday group. I made a few stops and arrived a bit before 9:30. By 10:30 I felt like I was back in the steroid downtime, fuzzy headed, feet bothersome, and more tired than normal. That continued until bedtime.
This morning (Thursday) for the first time in all of this process, when I awakened, I lay in bed for a few minutes wondering what the day would bring. Although the day has not begun for sensible people, I have been up for a couple of hours, still wondering what the day will bring. Since I attribute how I feel somewhat to attitude (mind) I am taking this day an hour at a time, slowly, to see if I will avoid another downtime reaction. Tomorrow, back to the steroids!
Tuesday, September 10, 2013
Multiple Myeloma
9-10-13
As expected, after the good Friday and Saturday at Wabash, coming down from the steroids Sunday and Monday was brutal - not pain, but fuzzy headed and very tired. I am getting tired of saying how tired I am.
Did get to the Dr's office for routine blood tests yesterday afternoon, no negative report.
As expected, after the good Friday and Saturday at Wabash, coming down from the steroids Sunday and Monday was brutal - not pain, but fuzzy headed and very tired. I am getting tired of saying how tired I am.
Did get to the Dr's office for routine blood tests yesterday afternoon, no negative report.
Saturday, September 7, 2013
Multiple Myeloma
9-7-13
Took my steroid hit early yesterday, left after noon for a fine visit to Wabash.
Dinner with the Matterns, a good sleep in the Charley Creek Inn, lunch today with Mary Ann's high school class get-together, an annual event. Started down off the steroids at the lunch, drove back to Indianapolis, had a brief nap, and probably am all the way down - very tired.
Having read some of the letters from MA's classmates unable to attend the lunch, and talking with many of those there, without discounting the severity of MM, I realize my symptoms and my limitations are little to complain about. That may not keep me from complaining, but it should.
Took my steroid hit early yesterday, left after noon for a fine visit to Wabash.
Dinner with the Matterns, a good sleep in the Charley Creek Inn, lunch today with Mary Ann's high school class get-together, an annual event. Started down off the steroids at the lunch, drove back to Indianapolis, had a brief nap, and probably am all the way down - very tired.
Having read some of the letters from MA's classmates unable to attend the lunch, and talking with many of those there, without discounting the severity of MM, I realize my symptoms and my limitations are little to complain about. That may not keep me from complaining, but it should.
Wednesday, September 4, 2013
Multiple Myeloma
9-4-13
Nothing much new recently, except Monday when I could not stay awake for some reason, so I didn't try.
Feet numb, but not as severe, or I am simply getting used to them. Always tired, nothing new there.
I haven't gotten to the yard work, but I have been up, out, and about more. Made the Wednesday group this morning, did some shopping, and Mary Ann and I went to Panera for dinner.
Hoping for a good Friday and Saturday in Wabash.
Nothing much new recently, except Monday when I could not stay awake for some reason, so I didn't try.
Feet numb, but not as severe, or I am simply getting used to them. Always tired, nothing new there.
I haven't gotten to the yard work, but I have been up, out, and about more. Made the Wednesday group this morning, did some shopping, and Mary Ann and I went to Panera for dinner.
Hoping for a good Friday and Saturday in Wabash.
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