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.
Saturday, April 30, 2016
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.
Thursday, February 4, 2016
Multiple Myeloma
2-4-16
I continue to be in remission - all blood tests within suggested limits. Dr. Abonour very pleased, we agree. For the immediate, I will stay on the two week on, two week off infusions of chemo and steroid, primarily for maintenance. Had those infusions yesterday, seem early this morning to be down from the steroid high - msy be getting accustomed.
I am in physical therapy for my right leg which suffered from the lesion mentioned in prior blogs. I go twice weekly and have exercises for at home on the other days. I walk with little pain but still use cane for balance. I test right v. left, right much weaker, but PT seems already to be helping.
Dr. Abonour said yesterday that now is a good time to consider repair of my mitral valve - murmur I call my MVP. I have seen two cardiologists and three heart surgeons, all of whom believe the valve should be repaired. I will see another surgeon next week, I think he will be the last, and the decision to proceed should follow closely.
I see Dr. Abonour again on March 2. I will get back here soon thereafter to report on the further blood tests. I should by then know more about the heart surgery.
MM is going to be with me for life. Remission means it is being controlled, at least that is what it means to me. But for the continuing fatigue, possibly contributed to by the heart problem, certainly contributed to by age as any of you in your 80's are likely to understand, I feel fine. I have not gotten interested in getting my clubs ready for Spring, nor can I vacuum, but all else is full speed, well maybe not full but close, ahead. I am not worried about MM, nor about heart surgery, whatever will be, will be.
I wish the best to all you, my readers.
I continue to be in remission - all blood tests within suggested limits. Dr. Abonour very pleased, we agree. For the immediate, I will stay on the two week on, two week off infusions of chemo and steroid, primarily for maintenance. Had those infusions yesterday, seem early this morning to be down from the steroid high - msy be getting accustomed.
I am in physical therapy for my right leg which suffered from the lesion mentioned in prior blogs. I go twice weekly and have exercises for at home on the other days. I walk with little pain but still use cane for balance. I test right v. left, right much weaker, but PT seems already to be helping.
Dr. Abonour said yesterday that now is a good time to consider repair of my mitral valve - murmur I call my MVP. I have seen two cardiologists and three heart surgeons, all of whom believe the valve should be repaired. I will see another surgeon next week, I think he will be the last, and the decision to proceed should follow closely.
I see Dr. Abonour again on March 2. I will get back here soon thereafter to report on the further blood tests. I should by then know more about the heart surgery.
MM is going to be with me for life. Remission means it is being controlled, at least that is what it means to me. But for the continuing fatigue, possibly contributed to by the heart problem, certainly contributed to by age as any of you in your 80's are likely to understand, I feel fine. I have not gotten interested in getting my clubs ready for Spring, nor can I vacuum, but all else is full speed, well maybe not full but close, ahead. I am not worried about MM, nor about heart surgery, whatever will be, will be.
I wish the best to all you, my readers.
Thursday, January 14, 2016
Multiple Myeloma
1-14-16
Better news: I am in remission. I will not continue the 21 days of capsules with 7 days off and and I will have only stabilizing chemo 2 weeks on, two weeks off. As I have mentioned, remission with MM seems to be waiting for a return, but good none-the-less.
Because of that good news, the infusion of steroids was cut back and I had only one push for nausea relief. too early to tell, but I am expecting a much easier return to normal fatigue.
While in remission, I will be considering the repair to my mitral valve prolapse (MVP). I should know more when I see Dr. Abonour on 3/6 - he will be looking at blood tests that day to be certain the remission is holding.
I will be back here early in February. Hope you are having a good start in 2016.
Better news: I am in remission. I will not continue the 21 days of capsules with 7 days off and and I will have only stabilizing chemo 2 weeks on, two weeks off. As I have mentioned, remission with MM seems to be waiting for a return, but good none-the-less.
Because of that good news, the infusion of steroids was cut back and I had only one push for nausea relief. too early to tell, but I am expecting a much easier return to normal fatigue.
While in remission, I will be considering the repair to my mitral valve prolapse (MVP). I should know more when I see Dr. Abonour on 3/6 - he will be looking at blood tests that day to be certain the remission is holding.
I will be back here early in February. Hope you are having a good start in 2016.
Friday, December 18, 2015
Mulstiple Myeloma
12-18-15
Good news since my last post. Having since then been on two chemo regimens and a doubling of steroid infusion, the blood tests are remarkably close to normal. Further, I now have little pain from the lesion for which I had the radiation treatments. Not in remission (which with respect to MM, I define as waiting for another bout) but apparently close.
I have had a heart murmur (mitral valve prolapse which I refer to as my MVP) for many years. In the course of trying to determine the cause of my leg swelling, an I.U. cardiologist ordered an echo EKG, read it, and determined open heart surgery was called for, but not until the MM was under control. Referred on to two surgeons who agreed that there was no immediate need but that the valve should be repaired once the MM was in remission. I have no reason to doubt their conclusion, but I have had echos for many years, the latest in 2014, administered by my cardiologist, who I have asked to look at this recent echo to see what he thinks. Up to now he has said surgery is an option but probably not necessary since there has been no change over the many years. Since I have never had patent symptoms, I don't think he has so advised to take advantage on the golf course.
Coming down from the double steroid, if that is what I am experiencing, is a bit difficult. Up and about with energy yesterday but almost total collapse last evening. If next week is the same, no Christmas Eve service for me, and as I write, I wonder what I will be like a week from now when the gang arrives. Maybe some can come at 5:00 a.m. (now) when I am alert.
Whatever I wish you a Merry Christmas (or whatever you celebrate) and a happy New Year. I will get back here mid January
Good news since my last post. Having since then been on two chemo regimens and a doubling of steroid infusion, the blood tests are remarkably close to normal. Further, I now have little pain from the lesion for which I had the radiation treatments. Not in remission (which with respect to MM, I define as waiting for another bout) but apparently close.
I have had a heart murmur (mitral valve prolapse which I refer to as my MVP) for many years. In the course of trying to determine the cause of my leg swelling, an I.U. cardiologist ordered an echo EKG, read it, and determined open heart surgery was called for, but not until the MM was under control. Referred on to two surgeons who agreed that there was no immediate need but that the valve should be repaired once the MM was in remission. I have no reason to doubt their conclusion, but I have had echos for many years, the latest in 2014, administered by my cardiologist, who I have asked to look at this recent echo to see what he thinks. Up to now he has said surgery is an option but probably not necessary since there has been no change over the many years. Since I have never had patent symptoms, I don't think he has so advised to take advantage on the golf course.
Coming down from the double steroid, if that is what I am experiencing, is a bit difficult. Up and about with energy yesterday but almost total collapse last evening. If next week is the same, no Christmas Eve service for me, and as I write, I wonder what I will be like a week from now when the gang arrives. Maybe some can come at 5:00 a.m. (now) when I am alert.
Whatever I wish you a Merry Christmas (or whatever you celebrate) and a happy New Year. I will get back here mid January
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