8-13-16
The good news is the increase in the bad test slowed; the bad news is the bad test got worse despite the addition of another chemo. So, with no change in the doses, I am going to a three week on, one week off schedule, starting with infusions on August 17.
We have known from the beginning that MM is not curable, but is treatable. Going to the "three on, one off" schedule is not in itself all that disturbing. What is disturbing is having to deal with the steroid ups and downs three weeks out of four. Maybe, though, adding the second chemo will use the steroid rather than making me a pain in the ____ subsequent to each infusion - I did seem less a pain after the last two infusions. Time will tell.
I have been feeling better. My feet continue to be uncomfortable but have not kept me awake at nights, nor, for that matter, during the day - most days I nap easily and often when I am sitting in my cave.
I did have an evaluation by a surgeon who has successfully deadened nerves in the feet to eliminate or greatly reduce foot pain. We quickly learned I am not a candidate for that surgery - among the problems for me is my pipe which I enjoy more than my feet hurting.
I have a new refrain: despite having had heart surgery in March and having MM which is not curable, I am in better shape than most born in 1932; of course, many of them are no longer with us.
I do believe my biggest problem is I cannot live long enough to get read all I have on my plate right now and more to read comes daily. I read that the most often cited Bible verse on Twitter in 2014 was Philippians 4:13. - "all things" is more than I will accomplish.
I will next see Dr. Abonour on September 14 and will get back here soon thereafter. I will report the "three on, one off" results, as well as my return (or not) to the golf course.
Saturday, August 13, 2016
Friday, July 15, 2016
Multiple Myeloma
7-15-16
I apologize to the two or three of you who follow this blog. I said I would be here in June - didn't make it. The only excuse I have is that, had I reported in June, my comments would have been the same as in May.
Saw Dr. Abonour last Wednesday, the 13th. The bad blood test result was a bit worse. I will continue the two weeks on, two weeks off schedule. I will receive an additional chemo which is an insertion in the chemo I have been getting. I will see Dr. Abonour on August 10, hope to have some good news to report soon thereafter.
I have no reason to expect less difficulty following the infusions. But, I have new scrips from Dr. A which may be helpful - I will know following the next infusion on July 20 and will report back here after August 10.
Mary Ann and I wondered aloud if my age and the years I have been treated meant I could expect my fatigue to gradually increase: age, yes, normal for anyone, treatment, no, that is why I have the new scripts, to get rid of the cough and sniffles to decrease the fatigue caused by the cold.
Concerning the heart surgery, no murmur, but still some discomfort at the site of entry. Although it has been more than four months, having that discomfort is not unusual at my age and with the cancer having some effect. In other words, no problem.
Will talk to you later.
I apologize to the two or three of you who follow this blog. I said I would be here in June - didn't make it. The only excuse I have is that, had I reported in June, my comments would have been the same as in May.
Saw Dr. Abonour last Wednesday, the 13th. The bad blood test result was a bit worse. I will continue the two weeks on, two weeks off schedule. I will receive an additional chemo which is an insertion in the chemo I have been getting. I will see Dr. Abonour on August 10, hope to have some good news to report soon thereafter.
I have no reason to expect less difficulty following the infusions. But, I have new scrips from Dr. A which may be helpful - I will know following the next infusion on July 20 and will report back here after August 10.
Mary Ann and I wondered aloud if my age and the years I have been treated meant I could expect my fatigue to gradually increase: age, yes, normal for anyone, treatment, no, that is why I have the new scripts, to get rid of the cough and sniffles to decrease the fatigue caused by the cold.
Concerning the heart surgery, no murmur, but still some discomfort at the site of entry. Although it has been more than four months, having that discomfort is not unusual at my age and with the cancer having some effect. In other words, no problem.
Will talk to you later.
Saturday, May 28, 2016
Multiple Myeloma
5-28-16
As expected, the offending blood test was more offensive this past week and the infusions restarted. I am on two weeks, off two weeks (the second on will be June 2), and back with Dr. Abonour on 6-22.
I always have an up then down time from the steroid infusion which accompanies the chemo. But, probably exasperated by a severe cold, no previous down could compete with the one beginning Thursday afternoon and continuing all day yesterday. I was more than a little worthless, not even able to sleep, which I don't do well under normal circumstances. In one of my more lucid moments, I suggested to Mary Ann that she take me to a motel - she kept me here.
Obviously, since I am here reporting, I am much better this morning, not normal, whatever that is, but close. If I can get a nap or two today, I may enjoy the holiday. Hoping to get to Laura's on Monday to meet Adam's soon to be in-laws - still regret Mary Ann and I will not make the California wedding.
Still have the feet and fatigue problems, may be making some improvement with feet, none with fatigue. No heart problems. Even with the lousy cold, clear lungs according to Dr. A.
I will get back here soon after June 22. As always, best to you readers.
As expected, the offending blood test was more offensive this past week and the infusions restarted. I am on two weeks, off two weeks (the second on will be June 2), and back with Dr. Abonour on 6-22.
I always have an up then down time from the steroid infusion which accompanies the chemo. But, probably exasperated by a severe cold, no previous down could compete with the one beginning Thursday afternoon and continuing all day yesterday. I was more than a little worthless, not even able to sleep, which I don't do well under normal circumstances. In one of my more lucid moments, I suggested to Mary Ann that she take me to a motel - she kept me here.
Obviously, since I am here reporting, I am much better this morning, not normal, whatever that is, but close. If I can get a nap or two today, I may enjoy the holiday. Hoping to get to Laura's on Monday to meet Adam's soon to be in-laws - still regret Mary Ann and I will not make the California wedding.
Still have the feet and fatigue problems, may be making some improvement with feet, none with fatigue. No heart problems. Even with the lousy cold, clear lungs according to Dr. A.
I will get back here soon after June 22. As always, best to you readers.
Saturday, April 30, 2016
Multiple Myeloma
4-30-16
Met with Dr. Abonour last Wednesday. The offending blood test was a bit farther from remission range, which for some reason we expected, and Mary Ann and I thought infusions would resume.
Not so; Dr. A. decided to give me another month to have recovery time from the heart surgery rather than add chemo & steroid to my body. He said the blood test was near enough to acceptable that the delay is warranted. He was very pleased to give us that news.
I see him again on May 25. Again, we will expect infusions to resume.
My fatigue persists - the only symptom I have, well, not quite the only, I still have problems with my feet. Dr. A. said to get more sleep and to exercise. Re the feet and my mention of the cancer and the heart, he continues to add, with his big smile, age. Fun guy.
I'm going to take his advice, at least partially, and try to nap.
Will be back here at the end of May.
Met with Dr. Abonour last Wednesday. The offending blood test was a bit farther from remission range, which for some reason we expected, and Mary Ann and I thought infusions would resume.
Not so; Dr. A. decided to give me another month to have recovery time from the heart surgery rather than add chemo & steroid to my body. He said the blood test was near enough to acceptable that the delay is warranted. He was very pleased to give us that news.
I see him again on May 25. Again, we will expect infusions to resume.
My fatigue persists - the only symptom I have, well, not quite the only, I still have problems with my feet. Dr. A. said to get more sleep and to exercise. Re the feet and my mention of the cancer and the heart, he continues to add, with his big smile, age. Fun guy.
I'm going to take his advice, at least partially, and try to nap.
Will be back here at the end of May.
Saturday, April 2, 2016
Multiple Myeloma and Heart
4-2-16
Saw Dr. Abonour last Wednesday. One of the blood test readings is a bit out of recommended, but nothing like it has been in the past. Consequently, the chemo-steroid treatments will continue in abeyance until I see Dr. A. again on 4-27. I expect the infusions will resume that day.
Saw Dr. Hillis, my cardiologist, yesterday. The port access mitral valve repair eliminated my heart murmur. Usually notice of such comes after a few months; for me, there may be no such notice since I was never aware of the murmur but by EKG's - I had no physical notice. I see my surgeon, Dr. Heimansohn, on April 14.
Having cancer and a heart problem at the same time sounds daunting. For the cancer, however, despite the feet discomfort and fatigue problems, the most difficult aspect has been the ups and downs from the steroids, not obvious to an observer.
For the heart problem, if I keep my shirt on to hide the scar on my right upper chest, there is no obvious problem to an observer. But the recovery from the surgery will be slow, very slow, limiting my activity. Again, much fatigue, but for me the most difficult restriction is no driving, which means Mary Ann has to haul me about. She is a good driver, but I would be unhappy having anyone hauling me. I hope Dr. Heimansohn will lift that restriction on 4-14. Then, I should be able to live with the expected 2 to 4 months recovery. I doubt I will ever be permitted to vacuum but I may be able to swing a golf club in the Fall.
It is now just past 3:00am here, time for my first nap of the day.
Saw Dr. Abonour last Wednesday. One of the blood test readings is a bit out of recommended, but nothing like it has been in the past. Consequently, the chemo-steroid treatments will continue in abeyance until I see Dr. A. again on 4-27. I expect the infusions will resume that day.
Saw Dr. Hillis, my cardiologist, yesterday. The port access mitral valve repair eliminated my heart murmur. Usually notice of such comes after a few months; for me, there may be no such notice since I was never aware of the murmur but by EKG's - I had no physical notice. I see my surgeon, Dr. Heimansohn, on April 14.
Having cancer and a heart problem at the same time sounds daunting. For the cancer, however, despite the feet discomfort and fatigue problems, the most difficult aspect has been the ups and downs from the steroids, not obvious to an observer.
For the heart problem, if I keep my shirt on to hide the scar on my right upper chest, there is no obvious problem to an observer. But the recovery from the surgery will be slow, very slow, limiting my activity. Again, much fatigue, but for me the most difficult restriction is no driving, which means Mary Ann has to haul me about. She is a good driver, but I would be unhappy having anyone hauling me. I hope Dr. Heimansohn will lift that restriction on 4-14. Then, I should be able to live with the expected 2 to 4 months recovery. I doubt I will ever be permitted to vacuum but I may be able to swing a golf club in the Fall.
It is now just past 3:00am here, time for my first nap of the day.
Saturday, March 19, 2016
Multiple Myeloma and Heart
3-19-13
Although I have not had a recent blood test specific for MM, no reason to suspect that remission does not continue. I will see Dr. Abonour on 3-30 when ongoing maintenance will be decided.
Had a port access mitral valve repair on 3-7. Rather than the expected 4-5 day confinement, I was not released until 3-15. The docs monitored my heart rate carefully to determine I did not need a pacemaker. Those who have listened to my heart since say the murmer is no longer.
Recovery is slow, the three inch cut through my upper chest continues to be troublesome. The limitation on my activity is substantial, no heavy lifting, no driving, no vacuuming - Mary Ann has to maintain vigilance 24-7 for at least another 10 days. Frankly, hers is the most difficult task.
I will see my cardiologist on 4-1, then my surgeon on 4-14. More then.
Although I have not had a recent blood test specific for MM, no reason to suspect that remission does not continue. I will see Dr. Abonour on 3-30 when ongoing maintenance will be decided.
Had a port access mitral valve repair on 3-7. Rather than the expected 4-5 day confinement, I was not released until 3-15. The docs monitored my heart rate carefully to determine I did not need a pacemaker. Those who have listened to my heart since say the murmer is no longer.
Recovery is slow, the three inch cut through my upper chest continues to be troublesome. The limitation on my activity is substantial, no heavy lifting, no driving, no vacuuming - Mary Ann has to maintain vigilance 24-7 for at least another 10 days. Frankly, hers is the most difficult task.
I will see my cardiologist on 4-1, then my surgeon on 4-14. More then.
Saturday, March 5, 2016
Multiple Myeloma
3-5-16
Continuing good blood tests when I saw Dr. Abonour on Wednesday 3-2. He was pleased to discontinue maintenance infusions so I could have the surgery described below. I am to see him again on Wednesday, March 30.
So, on Monday, March 7, Dr. David Heimansohn, surgeon, will perform a "port access mitral valve repair" on my valve which has been leaking for some 40 years. He does not have to open my chest; he will make a rather small incision in my right chest and work through it to the valve.
Yesterday Mary Ann and I spent about six hours at the St. Vincent Heart Center for a Pre-Op consultation. Had numerous tests, all of which said proceed with surgery. I have some easy preps before going to the Heart Center at 5:30am on Monday.
Post surgery sounds anything but easy. After 3-5 days in the Heart Center, I will be going home with more restrictions than I can now remember. Some examples: someone has to be with me 24/7 for at least one week to be certain I can get about without falling; I probably will not be able to drive for a month, maybe even longer; I will need to take walks without a golf club, maybe with a cane, though:; I may have to stop by St. V.'s Hospital three times a week to drip off some blood for testing. I think there is more, but that gives you an idea of the difficulties for Mary Ann - have good thoughts for her.
Chances are good that, with the remission mentioned and the valve repair, my fatigue will lesson, not enough to help with housework, but enough to enable me to get the garbage cans down to the street. Maybe, although it is counter-intuitive, I will be able to sleep more than 4-5 hours, thus arising at a more normal hour, 4:00am or so. Time will tell.
I should get back here sometime around March 12 to report progress on the heart repair. As with the cancer, but for the recovery restrictions, I continue to stay positive - whatever will be, will be.
Continuing good blood tests when I saw Dr. Abonour on Wednesday 3-2. He was pleased to discontinue maintenance infusions so I could have the surgery described below. I am to see him again on Wednesday, March 30.
So, on Monday, March 7, Dr. David Heimansohn, surgeon, will perform a "port access mitral valve repair" on my valve which has been leaking for some 40 years. He does not have to open my chest; he will make a rather small incision in my right chest and work through it to the valve.
Yesterday Mary Ann and I spent about six hours at the St. Vincent Heart Center for a Pre-Op consultation. Had numerous tests, all of which said proceed with surgery. I have some easy preps before going to the Heart Center at 5:30am on Monday.
Post surgery sounds anything but easy. After 3-5 days in the Heart Center, I will be going home with more restrictions than I can now remember. Some examples: someone has to be with me 24/7 for at least one week to be certain I can get about without falling; I probably will not be able to drive for a month, maybe even longer; I will need to take walks without a golf club, maybe with a cane, though:; I may have to stop by St. V.'s Hospital three times a week to drip off some blood for testing. I think there is more, but that gives you an idea of the difficulties for Mary Ann - have good thoughts for her.
Chances are good that, with the remission mentioned and the valve repair, my fatigue will lesson, not enough to help with housework, but enough to enable me to get the garbage cans down to the street. Maybe, although it is counter-intuitive, I will be able to sleep more than 4-5 hours, thus arising at a more normal hour, 4:00am or so. Time will tell.
I should get back here sometime around March 12 to report progress on the heart repair. As with the cancer, but for the recovery restrictions, I continue to stay positive - whatever will be, will be.
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