You can't expect a cancer-blog to always be reporting good news and I am very sorry that today's report will not be humorous or presenting good progress.
On Wednesday (1/22), I went to Boston for a day of tests to confirm my readiness for stem cell harvest. I had been looking at this as a formality of sorts since I had been told that the therapy I have been getting ("RVD") was nearly 100% effective in bringing MM into remission. Unfortunately, I flunked the test. My MM may have been knocked back by "RVD", but it appears that the disease did not stay knocked down for long. In addition to bad blood chemistry, there has also been additional bone deterioration in my spine.
Needless to say, this is a fairly major setback.
The doctors did not sound all that dismayed by this news. (I think they are trained to never sound dismayed.) Their attitude was, "Well - this happens sometimes and there are other treatments we can try that are usually highly effective under these conditions." I am sure what they are telling us is factually true, but still this is a big disappointment. I had always figured we would get to the point where "RVD" would stop being effective, but I had hoped that time would be as much as 3 - 10 years in the future and that in the meantime, I would be able to hike and chop wood and ski and lead a pretty normal life.
This also means that I have been kicked off the Clinical Trial. The good news is that while I will keep my Dana Farber oncologists, I can get most of my chemo in Hookset, NH - which is one hour from Meredith. We are not sure what this means relative to the Westboro place (Foxdown Abbey), but we plan to go ahead with the purchase. Hookset is almost exactly half-way in between the two towns; perhaps we will still spend half time in each place.
On Wednesday and Thursday, I was pretty depressed about this development, but I am back to taking things one day at a time. This development probably means that my survival prospects are not as good as they had been, but dwelling on that will not help matters. I am trying to get the most out of each day.
At this point, I have been off of chemo for three weeks and the chemo side effects are pretty much gone. It is great to have my sense of taste back and to be able to enjoy my food for a while. It is also good to have my brain back to normal - for me that is. I had not realized how much I had been affected with "motor mouth syndrome" (Chemo Brain?). A holiday card that I had sent came back as undeliverable and I could see from the address that I had had a lot of difficulty actually hand writing it.
On the other hand, I think that the cancer has been doing some additional bone damage as it has come back. I have a low-grade pain in my back that as been increasing over the last few weeks and another pain in the lower ribs on my right side. Neither is very bad and I am hoping to knock that down with chemo that starts next week. These get worse as the day goes on and they limit what and how much I can do physically. It does bother me a bit trying to sleep, since it hurts more when I am lying down than when I am sitting. The good news is that I can get a reasonably good night's sleep by carefully finding a position that is pain free. And I can do this without taking any medication. I really am quite content as long as I can do that.
So that is the summary of where things are. I am sorry I can't report more positive developments, but things are what they are and I promised to keep you informed, so there it is. I will let you know more as I know more.
On Wednesday (1/22), I went to Boston for a day of tests to confirm my readiness for stem cell harvest. I had been looking at this as a formality of sorts since I had been told that the therapy I have been getting ("RVD") was nearly 100% effective in bringing MM into remission. Unfortunately, I flunked the test. My MM may have been knocked back by "RVD", but it appears that the disease did not stay knocked down for long. In addition to bad blood chemistry, there has also been additional bone deterioration in my spine.
Needless to say, this is a fairly major setback.
The doctors did not sound all that dismayed by this news. (I think they are trained to never sound dismayed.) Their attitude was, "Well - this happens sometimes and there are other treatments we can try that are usually highly effective under these conditions." I am sure what they are telling us is factually true, but still this is a big disappointment. I had always figured we would get to the point where "RVD" would stop being effective, but I had hoped that time would be as much as 3 - 10 years in the future and that in the meantime, I would be able to hike and chop wood and ski and lead a pretty normal life.
This also means that I have been kicked off the Clinical Trial. The good news is that while I will keep my Dana Farber oncologists, I can get most of my chemo in Hookset, NH - which is one hour from Meredith. We are not sure what this means relative to the Westboro place (Foxdown Abbey), but we plan to go ahead with the purchase. Hookset is almost exactly half-way in between the two towns; perhaps we will still spend half time in each place.
On Wednesday and Thursday, I was pretty depressed about this development, but I am back to taking things one day at a time. This development probably means that my survival prospects are not as good as they had been, but dwelling on that will not help matters. I am trying to get the most out of each day.
At this point, I have been off of chemo for three weeks and the chemo side effects are pretty much gone. It is great to have my sense of taste back and to be able to enjoy my food for a while. It is also good to have my brain back to normal - for me that is. I had not realized how much I had been affected with "motor mouth syndrome" (Chemo Brain?). A holiday card that I had sent came back as undeliverable and I could see from the address that I had had a lot of difficulty actually hand writing it.
On the other hand, I think that the cancer has been doing some additional bone damage as it has come back. I have a low-grade pain in my back that as been increasing over the last few weeks and another pain in the lower ribs on my right side. Neither is very bad and I am hoping to knock that down with chemo that starts next week. These get worse as the day goes on and they limit what and how much I can do physically. It does bother me a bit trying to sleep, since it hurts more when I am lying down than when I am sitting. The good news is that I can get a reasonably good night's sleep by carefully finding a position that is pain free. And I can do this without taking any medication. I really am quite content as long as I can do that.
So that is the summary of where things are. I am sorry I can't report more positive developments, but things are what they are and I promised to keep you informed, so there it is. I will let you know more as I know more.
I am sure there will be good news soon. One clinical trial may not work but another may. There are just so many options and it takes time to find the right on.
ReplyDeleteMay you have my energy and spirit as long as you need it.
Barbara will help you get through this journey. She is strong and determined!!!!
Love you and let's get some positive news soon. Joan
Warren Kate Sands past along your Christmas Note and URL. We wish you the best. Cancel is a terrible disease and we hope you beat it. Sorry to hear you won't be in Vail; Bev, our son, and I have been going there in late Feb for the past couple of years. It would have been good to ski together or have a drink. Good luck!
ReplyDeletematt
Matt -
DeleteThanks for the words of encouragement. I wish I had known that you had been in Vail when I was there. It would have been great to get together.