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.

MB and Rocco (dark photo but big smiles)

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.

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!

Trying to use my brain doing puzzles

First big outing, riding in the golf cart with Paul.

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.

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:)

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!

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!!



   

Day +92 So Many Complications!

February 21, 2019

     When the option of a Stem Cell Transplant came up last May to halt the progression of my Multiple Sclerosis, I would have never imagined what we would be dealing with now. We clearly knew that they were risks involved, but out of all bone marrow transplants, the autologous (where you use your own donor cells) are considered to go the most smoothly. In fact, for autologous, they estimate your hopital time as 30-days and then a pretty steady recovery. For allogenic, where you have a donor, they predict a 100-day hospital/recovery. 

     Well, I am at Day 92, thankfully home from Seattle, but still having IV treatments 3 day a week. Fortunately, they are supposed to finish by the end of next week if we can keep the virus load down. Even with the virus disappearing, I am still having gut issues. It is very rare for autologous transplant, but they think that my system was so beaten down from the chemo that my cells didn't recongnize eachother.  The treatment is just a lot of Predinisone and so far it is woking. . .I ate a little bit this weekend and gained one pound! They've put me on a newborn diet (white rice, bread, potatoes, applesause and canned peaches. I can slowly introduce more complex things but this is fine for now.)

      Paul will finally make it back to work next work!  His colleagues have been absolutely amazing through this whole ordeal! They have supported us in every possible way. We have received gifts and flowers and offers of paid sick time and prayers and dog-walkers!  I cannot begin to thank you all enough!

Next week,  I have some wonderful friends and famly who will transport me to/from appointments.

I know this was a long blog, but I wanted to let everyone know that there is a slight recovery happening and thank you for your continued love and prayers!!

And, the hair is beginning to grow. . .slightly:)

   

HOME!

So, we made it home safely and I am making a little progress in recovery. I am beginning to eat again (and keep it down) and get a little stronger.  I spend three days a week at the Comprehensive Cancer Center at Alta Bates while they try and treat these viruses, and the other days I get to rest at home.  We're hoping these meds work and we can lessen the outpatient days.

Paul is still off work taking care of me and I think he'd love to go back to work.  He has passed sainthood in my book. You say those vows, so young and carefree, not really even understanding the depth of "in sickness and in health".  Well. he has now lived through "in sickness" and carried me through, too. I cannot even begin to tell you how often I cried and thought I was dying and he didn't waiver. Not once. He set alarms for all my medicine, did my laundry, helped me bathe, pushed me up and down the hill in a wheelchair at any hour, kept track of everything! I am so in awe and grateful.

Thank you so much to everyone who had me in their thoughts and prayers, sent cards, blankets, shawls. A huge thank you to my parents who did a trade with Paul for a week and vigilantly watched over me in the hospital.  I have a long recovery ahead, but it's nice to start seeing some improvement.

Leaving Seattle!

Wow! Feels like a miracle, but between the doctors and Paul's persistence and many, many prayers and tears, it has been arranged for me to go home and continue treatment at home! We are packing up right now and and have a morning flight into Oakland.

So, I am back inpatient at the UW, trying to to get rid of all theses viruses that have found me: ADN (blood, gut, and urine), RSV (pneumonia), BK Virus and pseudo graft versus host disease.

There is one very strong anti viral drug that I have started on IV Monday, Wednesdays, and Fridays, but we are deperately trying to coordinate with the Bay Area.

Paul and my parents took a week switch because everyone is so exhausted! I never ever would have imagined what these complications could add to what seemed an already sginificant time (kept hearing 30-days?)

You'll have to ask me in a year, but as of now. . .I would be perfectily happy in my old MS me.

Thank you for your kind thoughts and prayers,