Tuesday, February 8, 2022
THREE YEAR (AWESOME) UPDATE I am so happy to share that I had two MRIs yesterday, head and spine. Since transplant, there has been No Evidence of Disease Activity (NEDA)!!! This is all we dreamed of and it has been quite the journey. Loving my new life! Thank you all for your continued support!! I am eternally grateful.
Thursday, November 21, 2019
ONE YEAR Post Transplant
November 21, 2019
WOW! It's hard to believe all that has happened in a year, much of it I don't even remember. It truly was exhausting and took its toll on the whole family. I feel like we are all just beginning to find a normal again. Normal will be great.
I am continually feeling stronger, exercising and gaining weight. I started my first round of vaccinations last week and am venturing out a lot more, even got in a quick trip to Tahoe. I had planned a great walking date at Lake Chabot today to celebrate the one-year, but ended up home in bed. I've got a little cold and I just want to stay clear of the hospital for Thanksgiving!
I am really looking forward to this year's holidays (I missed way too many last year)! Wishing everyone a wonderful holiday season with loved ones.
WOW! It's hard to believe all that has happened in a year, much of it I don't even remember. It truly was exhausting and took its toll on the whole family. I feel like we are all just beginning to find a normal again. Normal will be great.
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| MB and Rocco (dark photo but big smiles) |
I am really looking forward to this year's holidays (I missed way too many last year)! Wishing everyone a wonderful holiday season with loved ones.
Saturday, August 3, 2019
Day +255
August 3, 2018
So, a lot of news this week with Selma Blair (American actress) on the cover of People magazine and a segment on Good Morning America about MS (https://www.goodmorningamerica.com/wellness/story/selma-blair-breakthrough-stem-cell-treatment-ms-64705558) She just had HSCT in Chicago, which is a very similar protocol to what I had done in Seattle. There is a difference in the intensity of chemo, in that Chicago is a little gentler (non-myleoblative). In Seattle, they use myleoblative chemo which wipes out your bone marrow.
I had applied to Chicago and got good feedback , but they wanted active disease at the time of treatment. Basically, get worse and then call us! Seattle had a different philosophy and wanted to treat before there were more active lesions. At the time, Seattle was my only choice and I took it! After all the complications and reading on other people's facebook pages how quickly Chicago patients recovered, I had my doubts: Had I gone too far? Was this treatment too extreme? Would I ever recover?
Well, three weeks out of the hospital from pneumonia and I am bouncing back! I am actually feeling like I am healing instead of spiraling downward. And, with all the news on Selma Blair, I know the treatment is going to be more in- demand. I realize I'm lucky to have gotten it when I did, even if it seemed a bit extreme. Also, the doctor is Chicago is taking a sabbatical so the places in the US that will do this treatment are few.
It's funny, when I'm in the hospital, I often think of what I would write in this blog before I fall asleep. Unfortunately, I never get around to actually writing it. But this time, I remember one night in particular. I didn't feel well at all and, at times of coughing attacks, thought I really might not make it out of the hospital this time. It didn't help that the nurses would confirm my "do not resuscitate" orders every night! I started to think of bucket lists. Did I have one? What else did I need to do? Was I too late?
Earlier that day, the National Geographic channel was on and they were showing National Parks. They were featuring the Grand Tetons, right outside of Yellowstone. I thought, oooh, I'd like to go there again. I had been there on a cross-country trip with my best friend in college and remember it was spectacular. Then, I began to think of all the places I have been and things I have done: swimming with dolphins, backpacking through Europe, sailing up and down the California coast, working summers in Tahoe, flying in a bi-plane with my dad doing loops, going to amazing schools, marrying the love of my life and getting to stay home with my babies for a long time. What a life!
It's not that I don't have things I would still love to do, but I was just in awe of how blessed I have been for 49 years of living. I have such gratitude to my parents and all the people who have made this possible. It was a peaceful way to fall asleep and I'm happy to report. . .I woke up!
August 3, 2018
So, a lot of news this week with Selma Blair (American actress) on the cover of People magazine and a segment on Good Morning America about MS (https://www.goodmorningamerica.com/wellness/story/selma-blair-breakthrough-stem-cell-treatment-ms-64705558) She just had HSCT in Chicago, which is a very similar protocol to what I had done in Seattle. There is a difference in the intensity of chemo, in that Chicago is a little gentler (non-myleoblative). In Seattle, they use myleoblative chemo which wipes out your bone marrow.
I had applied to Chicago and got good feedback , but they wanted active disease at the time of treatment. Basically, get worse and then call us! Seattle had a different philosophy and wanted to treat before there were more active lesions. At the time, Seattle was my only choice and I took it! After all the complications and reading on other people's facebook pages how quickly Chicago patients recovered, I had my doubts: Had I gone too far? Was this treatment too extreme? Would I ever recover?
Well, three weeks out of the hospital from pneumonia and I am bouncing back! I am actually feeling like I am healing instead of spiraling downward. And, with all the news on Selma Blair, I know the treatment is going to be more in- demand. I realize I'm lucky to have gotten it when I did, even if it seemed a bit extreme. Also, the doctor is Chicago is taking a sabbatical so the places in the US that will do this treatment are few.
It's funny, when I'm in the hospital, I often think of what I would write in this blog before I fall asleep. Unfortunately, I never get around to actually writing it. But this time, I remember one night in particular. I didn't feel well at all and, at times of coughing attacks, thought I really might not make it out of the hospital this time. It didn't help that the nurses would confirm my "do not resuscitate" orders every night! I started to think of bucket lists. Did I have one? What else did I need to do? Was I too late?
Earlier that day, the National Geographic channel was on and they were showing National Parks. They were featuring the Grand Tetons, right outside of Yellowstone. I thought, oooh, I'd like to go there again. I had been there on a cross-country trip with my best friend in college and remember it was spectacular. Then, I began to think of all the places I have been and things I have done: swimming with dolphins, backpacking through Europe, sailing up and down the California coast, working summers in Tahoe, flying in a bi-plane with my dad doing loops, going to amazing schools, marrying the love of my life and getting to stay home with my babies for a long time. What a life!
It's not that I don't have things I would still love to do, but I was just in awe of how blessed I have been for 49 years of living. I have such gratitude to my parents and all the people who have made this possible. It was a peaceful way to fall asleep and I'm happy to report. . .I woke up!
Trying to use my brain doing puzzles
First big outing, riding in the golf cart with Paul.
Sunday, July 7, 2019
Little Setback July 7, 2019
Well, just as we were beginning to see some improvement, I got a little virus about two weeks ago. That turned into pneumonia and then mysterious micro emboli (clots) scattered around my lungs. I had a 7-day hospital stay and just came home on the 4th. I am very weak and tired, but wanted to give a quick update.
Thank you for the continued support and prayers.
Thank you for the continued support and prayers.
Sunday, May 5, 2019
Day 165+ A little bit of progress. . .
It's so hard to believe how long this has been going on. . .the process started almost one year ago today! I know that because my brother called to see if I wanted to go sailing today (nice of him, but I'm not there yet). It was right about this time last year that I went out sailing. I felt a little dizzy before we even got on the boat and then got sick out in the Bay which has never happened to me before. By the next day, I was at the hospital getting steroids for a full-blown MS attack. That is when my doctor first brought up HSCT.
With another attack about a month later, HSCT became a real possibility. Looking back, I was excited! I knew it was a big procedure, but the possibility of halting MS overshadowed my fears. We did a ton of research and up to Seattle I went, thinking it would be about 30 days away from home. Unfortunately, I had complications that the doctors never would have predicted and this process has been grueling! I am still not sure that I would recommend it, but I'll wait to make a final verdict.
We are still dealing with stomach issues. I had an endoscopy which revealed a few ulcers in my upper GI tract and a little hernia causing acid reflux. The doctors gave me some meds and say that these should heal within three months. The good news was that the steroids did treat the pseudo graft versus host disease.
Things are finally starting to look up a little though. I got the catheter removed from my chest and that is a huge relief! After six months, I thought I'd have a more significant scar, but it really is just a strange little hole in my chest. The great part is that I don't have to do a body wrap to take a shower anymore. Also, we (Paul) don't have to flush the lines every night, which was getting to be a real hassle. So, now I get my labs the old-fashioned way, through a vein in my arm.
My labs were not good for awhile, meaning really low blood counts, but they seemed to rise up right before Easter. My doctor was satisfied and gave me permission to go to brunch with the family. I was wiped out, but it was so nice to be out of the house with everyone.
I have a little hair coming in, smooth at first, but starting to get frizzy. I might try to get the greys colored soon and go without hats/scarves. I am walking really good, up and down the stairs and around the neighborhood. I just get very tired, very quickly.
The best part is that I am not at the hospital as much. I have started having visitors and am trying to get out a little more, just not near crowds.
Easter Brunch with (Some)Family
Spring in my Backyard
My May Mugshot:)
With another attack about a month later, HSCT became a real possibility. Looking back, I was excited! I knew it was a big procedure, but the possibility of halting MS overshadowed my fears. We did a ton of research and up to Seattle I went, thinking it would be about 30 days away from home. Unfortunately, I had complications that the doctors never would have predicted and this process has been grueling! I am still not sure that I would recommend it, but I'll wait to make a final verdict.
We are still dealing with stomach issues. I had an endoscopy which revealed a few ulcers in my upper GI tract and a little hernia causing acid reflux. The doctors gave me some meds and say that these should heal within three months. The good news was that the steroids did treat the pseudo graft versus host disease.
Things are finally starting to look up a little though. I got the catheter removed from my chest and that is a huge relief! After six months, I thought I'd have a more significant scar, but it really is just a strange little hole in my chest. The great part is that I don't have to do a body wrap to take a shower anymore. Also, we (Paul) don't have to flush the lines every night, which was getting to be a real hassle. So, now I get my labs the old-fashioned way, through a vein in my arm.
My labs were not good for awhile, meaning really low blood counts, but they seemed to rise up right before Easter. My doctor was satisfied and gave me permission to go to brunch with the family. I was wiped out, but it was so nice to be out of the house with everyone.
I have a little hair coming in, smooth at first, but starting to get frizzy. I might try to get the greys colored soon and go without hats/scarves. I am walking really good, up and down the stairs and around the neighborhood. I just get very tired, very quickly.
The best part is that I am not at the hospital as much. I have started having visitors and am trying to get out a little more, just not near crowds.
Monday, March 18, 2019
Day +117
Day +117
So, there is some progress, but my stomach is still not right. We are not sure what is really causing all the pain...it could still be the pseudo graft versus host disease or it could be the side effects of the prednisone which is supposed to be treating the gvhd? Or a side effect from one of the other many prescriptions? I'm just hoping the chemo didn't do anything permanent to my gut. It is really bothersome.
In any event, once I am tapered off of the prednisone, I can stop having the anti-viral infusions every week. The plan is for two more weeks. At that point the doctor says we will consider removing the Hickman line (catheter) from my chest. That will be such a relief! People say they get used to it, but I've honestly never liked it. It has always made me nervous. It's been in since October and I am ready have it out!
As I get more energy, my mind is clearing a bit. Unfortunately, it is also making me realize how much of the last 5 months I don't recall. I look around and have all these amazing fuzzy socks, lotions, shawls, jackets, cards, etc. . . and I can't remember who to thank or when they appeared? So, to everyone who sent me things, please know that I love it all and appreciate it so much!
The doctor said my labs are looking good though and I can start to get out an about a little more. So, naturally, I was excited and asked about going to a big store, like Target or Costco? He said sure as long as I wear a mask and gloves and use a ton of hand sanitizer. Seriously?! I think I'll stick with Amazon Prime for a little longer!
So, there is some progress, but my stomach is still not right. We are not sure what is really causing all the pain...it could still be the pseudo graft versus host disease or it could be the side effects of the prednisone which is supposed to be treating the gvhd? Or a side effect from one of the other many prescriptions? I'm just hoping the chemo didn't do anything permanent to my gut. It is really bothersome.
In any event, once I am tapered off of the prednisone, I can stop having the anti-viral infusions every week. The plan is for two more weeks. At that point the doctor says we will consider removing the Hickman line (catheter) from my chest. That will be such a relief! People say they get used to it, but I've honestly never liked it. It has always made me nervous. It's been in since October and I am ready have it out!
As I get more energy, my mind is clearing a bit. Unfortunately, it is also making me realize how much of the last 5 months I don't recall. I look around and have all these amazing fuzzy socks, lotions, shawls, jackets, cards, etc. . . and I can't remember who to thank or when they appeared? So, to everyone who sent me things, please know that I love it all and appreciate it so much!
The doctor said my labs are looking good though and I can start to get out an about a little more. So, naturally, I was excited and asked about going to a big store, like Target or Costco? He said sure as long as I wear a mask and gloves and use a ton of hand sanitizer. Seriously?! I think I'll stick with Amazon Prime for a little longer!
Friday, March 1, 2019
DAY +100
DAY +100 Milestone of sorts. . .not exactly where I thought I'd be, but I can begin to see baby steps. I can make it up and down the stairs on my own. We finally got confirmation that the virus which was causing so many complications is under control. I still need the anti-viral infusions for quite some time to be safe, but we are going to try and combine the dosage to once a week. My stomach is still acting like it may have pseudo graft versus host disease so the balance of steroids and anti-virals is tricky.
I have been completely isolated in the hospital, the house, and the car for the last 100+ days. I have gone to the mail box once! With my new new schedule, the doctor has encouraged me to try and take some more steps so look out for the bald lady on Gold Hills Drive! I have very little strength, but he says as my platelets increase, I should start feeling stronger.
I have been so exhausted from treatments and one-day recovery periods, I am anxious to see how my body reacts to multiple days of recovery. I think it will be good and I can begin to get out of survival mode and live again! A little Sunshine would help too!!
I have been completely isolated in the hospital, the house, and the car for the last 100+ days. I have gone to the mail box once! With my new new schedule, the doctor has encouraged me to try and take some more steps so look out for the bald lady on Gold Hills Drive! I have very little strength, but he says as my platelets increase, I should start feeling stronger.
I have been so exhausted from treatments and one-day recovery periods, I am anxious to see how my body reacts to multiple days of recovery. I think it will be good and I can begin to get out of survival mode and live again! A little Sunshine would help too!!
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