It's been a few days since I've updated the post, so I thought 3:45 am Saturday would be a nice time to do it (the Dextamethasome/Steroids make it tough to sleep sometimes).
It has been an 'On Week', so we've been to DHMC three times this week; twice for labs & infusions and once for an MRI (the dreaded MRI's are getting better thanks to Ativan). I go in for re-staging on the 31st of August (my b-day), but we wanted to get a jump on things by doing the MRI. Again, re-staging includes the other 'dreaded item'-bone marrow biopsy. But even then, the last biopsy I had seemed to be much better than the previous ones. So maybe I'm toughening up to them. Either way, the 31st is going to be the date that determines what we do next. It will be the first day on my next cylce, which will be the 3rd cylce of this round. With the first round of chemo, I had four cylces before we declared 'remission'. Maybe we can do it in 3 cycles this time and get right on with the bone marrow transplant.
We have an appointment with Dr. Richardson (who focuses primarily on Multiple Myeloma) at Dana Farber Hospital in Boston on the 10th of September. September 10th is also the day we send our lovely and talented eldest daughter off to France (how do you say yikes in French?). It has been good to have her home for the summer, she brightens our home-mostly :).
We changed one of the chemo drugs this week, from Thalidomide back to Revlimid. The Thalimide had some side effects that have been tough to deal with, primarily neuropothy. Neuropothy makes your legs and hands numb and for a guy who recently had a tumor removed from his spine, and who is already relatively numb from the rib cage down- I didn't need it. It also caused my feet and ankles to balloon, again... didn't need. So it's back on to Revlimid which is the drug that helped put me into remmission the first time. However, this time around once we determine when the Bone Marrow Transplant will be, I am going to stay on the Revlimid until it's transplant time.
So all things considered, it has been a pretty good week. I'm looking forward to having my 'Off Week' next week. I'll be down in Westford, Ma teaching a course to some of our new business partners from California. It'll be good to be feel productive.
On a side not... my seventeen year old son, Joshua is working on his Eagle Scout project and had the brilliant idea of helping out the cancer patients at the Norris Cotton Cancer Center (at DHMC) with a more comfortable waiting environment.
He's noticed that some of the furniture in the lobby area's are not very comfortable, especially for those who are sick and have traveled some distance. I certainly agree with the assessment. Chemo makes for a long day, and any amount of time sitting in a cramped chair makes it even more so. His project (pending BSA's approval) is to provide the lobby area's for both the infusion area and the radiology with recliner chairs. The goal is to speak with local furniture stores, business owners, and anyone else who would like to make a donation for these new recliners. Seems like a worthy undertaking. We hope he has success with it.
Have a great weekend.
Blaine
It has been an 'On Week', so we've been to DHMC three times this week; twice for labs & infusions and once for an MRI (the dreaded MRI's are getting better thanks to Ativan). I go in for re-staging on the 31st of August (my b-day), but we wanted to get a jump on things by doing the MRI. Again, re-staging includes the other 'dreaded item'-bone marrow biopsy. But even then, the last biopsy I had seemed to be much better than the previous ones. So maybe I'm toughening up to them. Either way, the 31st is going to be the date that determines what we do next. It will be the first day on my next cylce, which will be the 3rd cylce of this round. With the first round of chemo, I had four cylces before we declared 'remission'. Maybe we can do it in 3 cycles this time and get right on with the bone marrow transplant.
We have an appointment with Dr. Richardson (who focuses primarily on Multiple Myeloma) at Dana Farber Hospital in Boston on the 10th of September. September 10th is also the day we send our lovely and talented eldest daughter off to France (how do you say yikes in French?). It has been good to have her home for the summer, she brightens our home-mostly :).
We changed one of the chemo drugs this week, from Thalidomide back to Revlimid. The Thalimide had some side effects that have been tough to deal with, primarily neuropothy. Neuropothy makes your legs and hands numb and for a guy who recently had a tumor removed from his spine, and who is already relatively numb from the rib cage down- I didn't need it. It also caused my feet and ankles to balloon, again... didn't need. So it's back on to Revlimid which is the drug that helped put me into remmission the first time. However, this time around once we determine when the Bone Marrow Transplant will be, I am going to stay on the Revlimid until it's transplant time.
So all things considered, it has been a pretty good week. I'm looking forward to having my 'Off Week' next week. I'll be down in Westford, Ma teaching a course to some of our new business partners from California. It'll be good to be feel productive.
On a side not... my seventeen year old son, Joshua is working on his Eagle Scout project and had the brilliant idea of helping out the cancer patients at the Norris Cotton Cancer Center (at DHMC) with a more comfortable waiting environment.
He's noticed that some of the furniture in the lobby area's are not very comfortable, especially for those who are sick and have traveled some distance. I certainly agree with the assessment. Chemo makes for a long day, and any amount of time sitting in a cramped chair makes it even more so. His project (pending BSA's approval) is to provide the lobby area's for both the infusion area and the radiology with recliner chairs. The goal is to speak with local furniture stores, business owners, and anyone else who would like to make a donation for these new recliners. Seems like a worthy undertaking. We hope he has success with it.
Have a great weekend.
Blaine
Good morning Blain,I see the steriod is doing the same thing to you that it did to me. I did not sleep for almost 2 weeks. I hope things go great for you so you can get the bone marro trans plant ,and hopefully get back to some normalsy in your life and your families life.Let Josh know that Gaylin & I are willing to make a monitary donation to his cause.Of coarse Gaylin does not know it yet, she is is still sleeping.I pray that the rest of the day goes well for you.Love Ya , Jim
ReplyDeleteHi Blaine
ReplyDeleteThanks so much for keeping us updated on your progress towards being completely well and free from cancer. Your son's project is absolutely wonderful! Keeping you all in prayer! Juanita
Glad to hear things moving in a forward and positive motion!! We love you.
ReplyDeleteGive our best to Dani...I hope she has a fabulous semester in Europe.
Bravo, Josh!
See you soon. God bless you all.
I HAVE MM. I CONSULTED WITH DANA FARBER FOR A SECOND OPINION AFTER I WAS DIAGNOSED IN JAN 2003.
ReplyDeleteI HAD READ ALL ABOUT MR MYELOMA DR RICHARDSON. I ENDED UP BEING TREATED BY DR. MCAFEE AT THE MASS.GENERAL. AT THE TIME DANA FARBERS PROTOCAL DID NOT HAVE TRANSPLANT AS AN OPTION. DR MCAFEE AT MASS GENERAL WAS ADAMANT THAT I HAVE 2 TRANSPLANTS USING MY OWN HARVESTED STEM CELLS. ABOUT TWO YEARS LATER THIS BECAME THE ACCEPTED PROTOCAL FOR MANY HAVING MM. NOW WHO WAS AHEAD OF THE GAME AT THE TIME DF OR MGH.ITS BEEN ABOUT 5 YEARS SINCE MT TRANSPLANTS AND THE MM IS STILL AT BAY. THE DOCTOR I HAVE AT MGH DR MCAFEE IS ONE OF THE SWEETEST MOST BRILLIANT AND COMPETENT DOCTOR I HAVE EVER HEARD OF MET. THIS MAN IS UNUSUALLY GREAT.I STRONGLY RECOMMEND YOU SEE THIS LIFE SAVING GEM AT THE MGH.HE CAN BE SEEN IN DANVERS AT MGH'S NEW FACILITY THERE TO AVOID BOSTON PARKING AND TRAFFIC HASSLE. I WISH YOU THE BEST BUT I KNOW FROM EXPERIENCE YOU HAVE TO GIVE YOURSELF THE BEST OPTION AND I RECOMMEND YOU SEE DR MCAFEE OR DR WEINGER AT THE MGH.THEY SAVED MY LIFE. JERRY MILLER 781 598 6485 SWAMPSCOTT