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.
Saturday, March 19, 2016
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
Friday, November 13, 2015
Mu;tiple Myeloma
11-13-15
Met with Dr. Abonour on Wednesday to learn that the newest regimen did not favorably affect the bad blood test - to the contrary, the bad got badder. Consequently, I am beginning another regimen, much like my first one from more than two years back, with the hope to get the bad under control by the end of the year when promising new drugs should be available.
The amusing aspect of that first regimen, which those of you who have labored along with me since the blog started will remember, was the commitment and reporting concerning unprotected sex. Again now, I have agreed to proper behavior by signing a three page series of commitments. One statement of truth would have been enough to cover all three pages.
I have no physical awareness of "the bad got badder", possibly because I have the other matters mentioned below with which to deal, but more likely because the bad simply is not patent. Some of the other matters are.
Just over two weeks ago I ended five days of radiation to clear (we hope) the lesion where my hip bone connects to my thigh bone. The Docs say we should know in 6,8, or 10 weeks if the zapping did the job. So, I continue to get about with a cane and have a self-rating pain scale of 0-10, with 0 meaning none and 10 being a faint. I have many zero times, no faints to date. Despite that 6,8,10 wait, I believe I have some lessening of pain in walking, maybe a good sign.
Probably unrelated to the cancer, but more troublesome just now, I have considerable swelling in my feet and ankles, so much that the skin has broken in two spots on my right leg. Diuretics have not helped. I am going to the IU Wound center next week to see if they can help.
I continue to believe whatever will be, will be, so I do what Dr. Abonour and the other doctors say to do, and proceed.
My greatest frustration, which I have had for years and which is unrelated to mortality, is knowing I cannot get read all I have to read. My desktop is full, my iPad has books unopened, and I keep adding others. I am a mile wide and an inch deep in my reading - there ought to be a subject in which I have no interest. I suppose that is better than having nothing of interest - then I might worry about having cancer.
I see Dr. Abonour on December 16 and will be back here soon thereafter. If in the interim there are remarkable results on the other problems, I will report them.
Have a great Thanksgiving.
Met with Dr. Abonour on Wednesday to learn that the newest regimen did not favorably affect the bad blood test - to the contrary, the bad got badder. Consequently, I am beginning another regimen, much like my first one from more than two years back, with the hope to get the bad under control by the end of the year when promising new drugs should be available.
The amusing aspect of that first regimen, which those of you who have labored along with me since the blog started will remember, was the commitment and reporting concerning unprotected sex. Again now, I have agreed to proper behavior by signing a three page series of commitments. One statement of truth would have been enough to cover all three pages.
I have no physical awareness of "the bad got badder", possibly because I have the other matters mentioned below with which to deal, but more likely because the bad simply is not patent. Some of the other matters are.
Just over two weeks ago I ended five days of radiation to clear (we hope) the lesion where my hip bone connects to my thigh bone. The Docs say we should know in 6,8, or 10 weeks if the zapping did the job. So, I continue to get about with a cane and have a self-rating pain scale of 0-10, with 0 meaning none and 10 being a faint. I have many zero times, no faints to date. Despite that 6,8,10 wait, I believe I have some lessening of pain in walking, maybe a good sign.
Probably unrelated to the cancer, but more troublesome just now, I have considerable swelling in my feet and ankles, so much that the skin has broken in two spots on my right leg. Diuretics have not helped. I am going to the IU Wound center next week to see if they can help.
I continue to believe whatever will be, will be, so I do what Dr. Abonour and the other doctors say to do, and proceed.
My greatest frustration, which I have had for years and which is unrelated to mortality, is knowing I cannot get read all I have to read. My desktop is full, my iPad has books unopened, and I keep adding others. I am a mile wide and an inch deep in my reading - there ought to be a subject in which I have no interest. I suppose that is better than having nothing of interest - then I might worry about having cancer.
I see Dr. Abonour on December 16 and will be back here soon thereafter. If in the interim there are remarkable results on the other problems, I will report them.
Have a great Thanksgiving.
Friday, October 30, 2015
Multiple Myeloma
10-30-15
I said in my last blog I would see Dr. Abonour on November 4 and would report soon thereafter - not so, I see him on November 11 to learn if the latest regimen is working, and I will report soon thereafter.
Regarding the radiation treatments: had number five last Wednesday and now the wait. In essence, I will determine if the treatments were successful - if I no longer have the pain in my right leg. In the interim, I am to be very careful with the leg, if I do something that hurts, I don't do it. The hope is the cancer cells will be gone and the bone will regenerate.
We were surprised to see the area of zapping. They did not pinpoint the lesion, they zapped from my middle to my exterior, said they hoped to get any cancer cells in the area. That makes sense to me, and I just lay on the table and let them have at it. The only discomfort was in my tailbone - those table are not very comfortable.
I have not had pain relief in these two days since the last treatment. Not unusual, they tell me weeks may be required for full relief. They repeat: "behave, with limited activity" so I will.
I will be back soon after 11/11.
I said in my last blog I would see Dr. Abonour on November 4 and would report soon thereafter - not so, I see him on November 11 to learn if the latest regimen is working, and I will report soon thereafter.
Regarding the radiation treatments: had number five last Wednesday and now the wait. In essence, I will determine if the treatments were successful - if I no longer have the pain in my right leg. In the interim, I am to be very careful with the leg, if I do something that hurts, I don't do it. The hope is the cancer cells will be gone and the bone will regenerate.
We were surprised to see the area of zapping. They did not pinpoint the lesion, they zapped from my middle to my exterior, said they hoped to get any cancer cells in the area. That makes sense to me, and I just lay on the table and let them have at it. The only discomfort was in my tailbone - those table are not very comfortable.
I have not had pain relief in these two days since the last treatment. Not unusual, they tell me weeks may be required for full relief. They repeat: "behave, with limited activity" so I will.
I will be back soon after 11/11.
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