Connect
Snapshots of hope: Life on the other side of transplant.
My husband snapped a photo of me walking on a beach this morning. I was running through the surf, picking up shells, smiling and feeling on top of the world with unabashed joy for being alive and healthy. So what?
Well, it’s a photo that wouldn’t exist if I hadn’t had a bone marrow transplant. It’s a snapshot of hope!
Three years ago today I was diagnosed with Acute Myeloid Leukemia, an aggressive blood cancer and fighting for my life. Prospects of ever being able to walk a beach again seemed beyond reach.
With a lot of chemo, I achieved remission, but my only hope for a future would be a bone marrow/stem cell transplant as the cancer would likely return. Let’s just say, that procedure isn’t a walk on the beach but it gave me a second chance at life and well worth the arduous journey it took to get here!
Along this journey, I’ve been able to help inspire and give hope to others who have faced my same battle. I’m alive, surviving and thriving because of a gift of life from my anonymous donor.
When facing a transplant, whether it’s stem cells, or a solid organ, it can be a daunting prospect. I think a gift we can give, as transplant survivors, is to share our positive transplant stories with anyone who is about to undergo the procedure or is in need of reassurance in their recovery.
Show me your Snapshot of hope! What photo do you have that wouldn’t exist without your transplant?
Like
Helpful
HugInterested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.
Connect
The furnished apartment we rented in Rochester allowed pets. I can’t say enough about how kind and helpful the manager and maintenance guy were. TheParkRochester.com
Good luck to you on your health journey.
Hi Sally, here are some links for information about lodging. I will put this out here…you will need to speak to your BMT coordinator about pets and visitors. You’ll be in a very vulnerable condition for infection. Unless protocols have changed, being around pets and family members was discouraged. That also meant no hugging or gifts of flowers, plants or anything that could potentially cause exposure to bacteria, viruses or mold/fungi.
There will be educational classes that can help you avoid infections from food or illnesses from exposure.
This might be a helpful guide to get you started. You’ll be having an allogenic SCT. So scroll til you find that info. There are sections for infection control, caregiver info, etc.
Here’s a comment by fellow mentor @naturegirl5 about Serenity house:
https://connect.mayoclinic.org/comment/930125/
It’s in this conversation about long term stays in Rochester.
Long Term Rental advice for Families - Mayo Clinic Rochester MN https://connect.mayoclinic.org/discussion/long-term-rental-advice-for-families-mayo-clinic-rochester-mn/
Another member, @dwolden posted this about lodging in Rochester. Her husband David had his BMT in August. https://connect.mayoclinic.org/comment/1201187/
Best Pet Friendly hotels in Rochester. https://connect.mayoclinic.org/discussion/best-pet-friendly-hotels/
Golden’s are the best, aren’t they? We had several over our lifetime and each one had such a unique personality and just precious dogs.
-
Like -
Helpful -
Hug
2 ReactionsAfter that I will come back for 6 day conditioning chemo before transplant.
We are starting the search now for housing in Rochester. We are hoping to rent a townhouse or home for a little more space when our kids visit. And we are hoping to find a place that will allow us to have our golden retriever with us. So much to think about. Any thoughts on housing? Are you familiar with the Serenity house network?
Yes. I'm here now finishing up my 2nd Hidac cycle, leaving tomorrow to go home and do my 2 weeks of midostauren chemo at home.
Hi Sally! It’s ok to be a little freaked out. You’ve already been through quite an odyssey with all the treatments for AML. I’m so happy for you that you’re in remission. But as you’ve most likely been told, AML can be a little trickster. With some of the mutations, the cancer cells can go dormant or into hiding during chemo allowing them to evade the treatment. They basically circumnavigate your immune system and the chemo. Over time, the leukemic cells can re-emerge and become even more difficult to treat.
Bone marrow transplant to the rescue! The goal is, with the infusion of the new immune, stem cells from a donor, it will again recognize cancer cells and snuff them out! A BMT gives you a second chance at life.
I’m guessing you recently just finished your last consolidation treatment. I’m not sure if you’ll have one more chemo session or not to keep you in remission before the transplant. I required one more month, just to make sure. If not, then you won’t have anymore chemo until the week right before Day Zero, which is transplant day.
Honestly, having gone through the AML chemo, you won’t be a stranger to the symptoms of the first week after the transplant. The familiar fatigue sets in, maybe some nausea and that low nadir period. But once the new cells engraft, things turn around fairly quickly. The recovery time is slower though. Your bmt team will do their utmost to keep you comfortable through all of it!
Since you’re having your transplant at Mayo, I can tell you first hand that you are in the best possible care! Seriously. The staff spoil us, even five and a half years later. I was able to call the BMT floor last week for guidance with a medical issue I was having…not directly related to transplant. I was assured that we are married for life as patients there and we are!
The fear of the unknown is the worst. So that’s why I’m here to help guide you through this along with so many others in the growing posse of BMT members. I’m here anytime to answer questions or concerns you might have. If you need information on lodging, or what to pack for extended stay at Rochester I can help with that too.
Oh I should ask, are you in Rochester?
There are a ton of stories here, My Bone Marrow Transplant story, will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
We’re all very open and honest here. We each have had our own journey and no two are alike. My suggestion is to not look online for information because some of it is just downright frightening! Having gone through the process, most of what I read didn’t happen. I learned to trust my BMT completely and let them do the worrying for me. Once you enter the process I think you’ll find you just go with the flow. You’ll be guided every step of the way.
What can I do to help you, Sally?
-
Like -
Helpful -
Hug
1 ReactionHi Sally, I’m in the process of writing a much longer response to you but wanted you to know I’m here, along with so many others of us who have had AML or another cancer that requires a bone marrow transplant. Together, we’ll help you through the entire process from pre - post!
I know you’re tired and worn down. That AML odyssey isn’t for sissies, is it! ☺️ The bone marrow transplant will help assure you that AML won’t rear its ugly head again.
Will you be at Mayo Rochester?
-
Like -
Helpful -
Hug
1 ReactionHi Lori,
I'm an AML leukemia patient at the Mayo clinic. I'm in remission and my transplant is scheduled for early March. I figured it was time to reach out because quite honestly I feel like I'm freaking out a bit. I've been through so much and have been on this journey since November 1 2024.
I was in very good health when all this started so that's good but I'm feeling a bit worn down as you can imagine. They found me a 10 out of 10 donor so I know I should be extremely grateful but honestly I'm pretty scared. Maybe just the fear of the unknown, of what the future looks like for me. I am a faith girl so I know that the Lord is with me. Right now I just need positive words and encouragement to help me get through these days in the weeks ahead. Thank you! Sally
-
Like -
Helpful -
Hug
2 ReactionsHi Lori, yes it does make sense now that I have kinda gotten over the disappointment. I just want to be healthy and back to my normal routine, I am still walking not 6miles like I use to, working in my yard but I tier so easily. I was so use to go go go never slowed down so I think that frustrates me.
I am so HAPPY for you😊🌈🌼
-
Like -
Helpful -
Hug
3 ReactionsIt’s understandable to be disappointed. However, having had this transplant myself, I know the demand the side effects of the chemo and reaction to the foreign stem cells can put on our organs. So, from my perspective, your doctors making the decision to keep you on your current drug therapy as opposed to undergoing a Allogenic stem cell transplant is sound. By doing so, they are avoiding any potential serious complications that might not have you not enjoying your fablife as much as you are right now. Does that make sense?
-
Like -
Helpful -
Hug
5 ReactionsYes unfortunately that was it. Very very disappointed. I just pray that I will be healed or the regiment they have me on will keep me in remission bc I have so much more living to do. It’s my fablife 😊
-
Like -
Helpful -
Hug
2 Reactions