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Hi @loribmt !
Well, we made it to Day 365 yesterday! I remember putting that in my calendar many, many months ago as a gesture of hope when we were in the thick of it in those early days post stem cell transplant.
As I’m sure you experienced the first year, we’ve done a lot of remembering what we were doing and how we felt a year ago. I’ve had so many “pinch me” moments not believing that we’ve come so far since then.
Dane’s chimerism remains strong, his BM biopsy a couple weeks shows no evidence of disease and he continues to receive his childhood vaccinations. We talk about how we hope to meet his generous donor next year (if he agrees to being revealed to us) in Germany where he lives. It’s one of the next great milestones to look forward to. We are starting to think a little beyond the biopsies every 3 months for at least the next year. He continues on the monthly maintenance therapy (which isn’t fun for him but continues to be recommended despite solid data to support it). His odds of relapse go way down in another 365 days. So for now, we are enjoying the sweetness of this positive moment in our journey.
In the meantime, we also celebrated our wedding anniversary yesterday. I have to admit it was a bit overshadowed by Dane’s 1 year re-birthday.
I’m full of gratitude for God’s grace, his 35 year old donor, the angels who appear to us as doctors and nurses, his original complete remission, surviving the thriving through the transplant, and the maintenance medicines available to him. Without these things, we’d be in a very different place today with his original diagnosis of high risk AML, secondary to previous chemo for a different cancer. Lord, he has really been through a lot these past 6 years, emotionally and physically, with a total of three cancer diagnoses. Life is so precious. We celebrate his original birthday (66 this year!) at the end of the month as well.
It feels surreal to have this second chance at each new day.
He is going fishing on the ocean later this afternoon and he couldn’t be more excited. It’s his passion. He has more clothing, sunscreen, gloves, and even a nose shield to keep him covered, than I’ve ever seen on a fisherman! He is well aware of how important of how important it is to protect his skin. He even waded up to his waist in the ocean a couple of days ago for a brief time and loved it.

Lori, I hope you are doing well and looking forward to your re-birthday later this month. You are a special inspiration for us of what’s possible in our future!

Mary

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Replies to "Hi @loribmt ! Well, we made it to Day 365 yesterday! I remember putting that in..."

Mary and Dane… So, truth be told, I’m sitting here trying to type blinking through tears of joy. Heartfelt congratulations to both of you for enduring the trials and tribulations of this past year!
You’re right, it is a time of reflection. I think you’ll find it happens every year around the anniversary of the transplant. It has for me (us). My re-birth day is coming up on June 28th. It will be year 6 and I’m already reflecting on what I was doing six years ago at this time. This was an enormously emotional/arduous time in our lives so it deserves the reverence of reflection and celebration…every single year! The celebration never gets old, because we are alive to see another year which wouldn’t have been possible without our donors and our tenacious fight to stay ‘vertical and ventilated’. 😂

I remember our first conversations very well and the trepidation in both of your hearts and minds for what to anticipate, how to prepare for the logistics of long term stay away from home and even choosing the right center for the BMT. You went into this fully prepared. I’m so happy to have been a part of that journey, along with our other members who so valiantly jumped to the rescue to calm your jitters, listened to concerns, offered suggestions and extended the lifeline of hope!
Congratulations also on another wedding anniversary. Though it may take back seat to the BMT story, the love story continues because of it. It’s all part of your life journey together. For my husband and myself, my journey through AML/BMT brought us closer together. We’ve always been solid but it’s easy to take things for granted. Facing death and getting that second chance really drives home the point that we are not immortal and things can change in the blink of an eye. So we’ve both learned to take more time to appreciate the small things in life, or as I like to say, “Live life like they left the gate open!”

We actually saw that situation unfold one day and it will forever be a moment etched in my memory. We’re on the road a lot. One day we were driving past a farm we’d seen many times with milk cows in a fence-in area near the barn. But that day was different. There was a breach in the gate! And my gosh, the cows were running pell mell out of the pen into the field…a couple were tentatively hanging back though. But one of them, whom we affectionately dubbed, Bessie, was running full speed, utter flailing in the wind…she was on the lam!!
Rick and I were both yelling in the car while giggling, “Run, Bessie, Run gurl!!” Hehe. Well, it was short lived as the trip home past the same farm saw the cows back in the pen resigned to a life behind bars…with farmer fixing the fence. Le Sigh.
But for one brief moment, that feeling of freedom, the elation of liberation had that old girl having the time of her life! That’s what we all need to be doing, every moment of the day! Never wasting a moment of our freedom to live.
Hah, how’s that for a morning sermon without caffeine! 😁

Thank you, Mary and Dane, for celebrating with your Connect family! This deserves a happy dance 💃💃 and cake! (I love cake! LOL) A huge group hug for the both of you!
Wish Dane the best of luck on his fishing expedition! Even if he doesn’t catch anything, the warmth of the sun, the cooling breezes on the sea and the salt water have such healing qualities…enjoy the moment. Love to you both! Lori

Mary and DANE!!! Wow!! What a wonderful piece to read this joyous Saturday!!! 365 days. 1 year!!! I like you are grateful for every single day i can get back t5o life as i know it. I am going to Vancouver for an event over 4th of July. My first plane trip since Christmas 2023. My hope is you get to meet your match. Three cancers put you into a different grouping Dane. I was told at a year there are choices. Not sure, but if we do not try, it will not happen. That is like our recovery. I have done every test and taken nearly every pill unless i forgot for the last 4 years for my 2 cancers. Treatment plans have a better chance if we follow the steps laid out for us. My sister found out the hard way with her cancer not going away. She came back to start over on her treatment. She is even considering the follow-up treatments.
As a fisherman, what a site of a joyous fisherman dressed in garb unlike others but there to keep him safer. That is a life to live. Joyous and free to be you.