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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 3 hours ago | Replies (578)Comment receiving replies
Hi Kat! We go through spits and spurts in some of the discussions, don’t we! But it’s like with old friends…we pick up where we left off. I often think of our groups in Connect as a Kaffeeklatsch where we break during the day to spend time with ‘family and friends’… I have fond memories of my mom, aunties and gramma or mom and her neighbors sitting around the kitchen table spilling their guts along with the coffee! I think most of the world’s problems were solved around that old table! Fast forward, now it’s me chatting with strangers who have become friends, through my computer screen ☺️
Time to check in with everyone! Thanks for starting it off today, @katgob! You’ve had a heckuva year from where you and I first began our discussion on your possible BMT. Now that’s in the rear view mirror and you’re speeding through an epic recovery!! 💖
Let’s “Rock the Casbah” and bring in some of the newbies, along with some veteran Allo-transplant members this morning to see how everyone is doing! @dwolden @katgob @mary612 @graycoose @susancurrit @wakop @jrwilli1 @tkidd51 @bevprescott @alohasteve @caregiverx2 @clock456 @avaleir @alive @edb1123 @kt2013 @jenmkr63 @maryb13350
If I’ve forgotten some names please forgive me but jump into the conversation along with the veterans of our BMT group!
We all have so much for which to be thankful…not only for the 2nd chance at life that we’ve been given. But for what it allows us to achieve! It’s a constant source of inspiration for me to not take a moment for granted. That doesn’t mean I don’t waste time or that there aren’t days without some negative thoughts lurking around the corner. But I try to savor the small things in life, look for hidden joy, practice mindfulness and positive affirmations. Most days I feel like Super Woman gifted with a power! Ha ha, I wish it was her body… le sigh… Alas, my super power is being perpetually perky! That’s a power to be used with extreme caution. It can be used for good or evil!! 😅
How has your life changed since your BMT? Any super powers, changes in how you live your life? Any notes of encouragement for those just starting out in this journey?
Replies to "Hi Kat! We go through spits and spurts in some of the discussions, don’t we! But..."
Day 106 post allogenic transplant for my beloved husband. It’s been quite a ride. His transplant was at Mayo Rochester. We lived in a nice little apartment in Rochester for four and a half months for the process. We were released last week and came home to our precious house in the Northwoods of Wisconsin, 200 miles from Rochester and our first trip home since pretransplant testing started back in July.
David needs five more cycles of “maintenance chemo” to try to ensure his high risk MDS does not recur. His blood counts are all still low because of that.
But we are both so happy, overwhelmed with joy to be back at home. Every day is a gift and a wonder.
He will begin today to get follow up care at our local cancer center with additional trips back to Mayo for tests and clinic visits as needed.
So it’s still a lot, but as yet we have not seen any GVHD symptoms. Watching for that, managing the interface between the medical entities and grimly seeing the bills left after insurance coverage come in, but we are together, closer than ever and so grateful for this opportunity to live and love.
Good morning all! Thank you @katgob and @loribmt for the invitation to update everybody on our stem cell transplant journey. So nice to hear the progress being made by fellow transplant warriors and your caregivers. Truly, heartwarming after the year we have all endured.
My husband is just about at his six month re-birth anniversary of his allo stem cell transplant for high risk AML at Northwestern in Chicago.
We received wonderful news this week of a second clean biopsy since transplant. Thank God!
He continues monthly chemo (Aza/Ven), is being weaned off Tacro slowly, all labs are stable, eating well, except for some nausea during chemo weeks. The chimerism looks good except the CD3 seems to be trending down, hoping the tacro reduction helps that. They are treating him for mouth thrush and keeping an eye on it for possible GVHD. One other bugaboo is blood clotting…. He is on Twice a day Lovanox shots for a breakthrough clot a couple months ago and he is just now experiencing pain on the other side of his neck, saying it feels like another clot. Docs are aware and we will get it imaged asap if it worsens. 🤦🏻♀️
He also has some neuropathy in his toes that a recent MRI of his spine shows is just that, not disease in his spine. Feels like for all his relative stability, he still has a lot of doctoring going on lately.
We are happy to receive this positive news during this holiday season, especially.
We are working on plans to visit Florida in Feb and get his monthly chemo and check ups there. It’s hard to make plans for the future, because of all the uncertainty we have learned to live with. But we are hanging onto hope and allowing ourselves to look a little bit into the near future with this trip.
Along with the myriad struggles, fear of the unknown, anxiety, and emotional pain, I’d say one of the greatest things we’ve gained this year is a true and deep understanding of what it means to live one day at a time. We throw that phrase around a lot in our culture, but we truly live it now and have a much greater understanding of how to do that. It’s the only way to stay centered and relatively calm. We want to cherish every single moment, even the mundane moments, choose joy, practice staying present with each other, our family, and start and finish each day with gratitude for all our blessings. I have always been a faith-filled person, but this experience has deepened my spiritual and faith life. It has also deepened the bond of love and trust between my husband and I, and it is a gift.
We still have rough days and nights, but we are making our way through, trying to hold onto the good stuff as much as possible and let go of what isn’t.
It’s all been worth it. It’s grounded us and our priorities in a way that nothing else could. We like to say we’ve learned to love life just as it is. Appreciate what we have, where we are, who we are with and not wish things were different.
We want to thank and send our appreciation to all of you here who share your stories with us because it gives us encouragement and inspiration to continue on our path.
Sending wishes for a blessed holiday season to you all.
Mary
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Hi, Lori: I am coming up on 5 years since my AML diagnosis and BMT next July. Other than some issues with high liver enzymes due to GVHD, I am doing great! I’m physically active, golfing and playing pickleball, living a normal life! I appreciate every day, my friends, and family. It definitely gives you a new perspective and appreciation for good health. I’m forever grateful for the wonderful doctors and nurses who helped me through my AML journey!