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Husband with AML facing a stem cell transplant
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 7 11:43pm | Replies (117)Comment receiving replies
Good morning, Mary. Well, darn it, your message made me all misty eyed. Thank you muchly for the gracious and kind words. It’s my pleasure to be able to help you and your husband over this rough patch in the road. Quite honestly there are moments, like this one, where I feel maybe I was spared to be a guide for others through their cancer odyssey. Never in a million years would I think that having cancer would have such a silver lining. But along my journey I’ve met so many amazing people, some whom have become dear friends, and had experiences I would never imagine because of what I’ve gone through and overcome. It’s in my nature to help and give back so being associated with Connect has been the icing on that cake.
I know this entire experience can feel overwhelming for both of you. But from what I’m reading, you two are a dynamic duo and quite the team. You’re doing everything thoughtfully and systematically. The details will fall into place. Brilliant move leasing the apartment that’s nearby. That will reduce your anxiety hugely. Do you need any suggestions for what to pack? I recently wrote a reply to another member who will be having a SCT later this summer. Maybe take a look at this post: https://connect.mayoclinic.org/comment/1059221/
You won’t need the segment about lodging. But there are 2 links for caregivers. Pretty sure I posted those for you before but now that you’re getting closer, it will be a refresher. Also, there’s a quick list of things I found helpful to take to the apartment where we stayed for 3.5 months.
I’m sorry about your dog not being able to come to the apartment with you. Wonderful that you have a friend who can take care of your fur baby! One less stressor for you!
Aww, and having a new grandbaby in the midst of all of this medical drama will be such a special gift! All these ‘birthdays’ at one time! This will be a memorable time of the year for decades to come.
You’ve got this! Trust the process, trust the team and let them do the worrying for you both. Just get through one day at a time and the worst will be past soon enough.
Prayers for a clean biopsy next week! Hugs, Lori.
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Hi Lori!
Hope you are doing well and having a good week.
We just received news that my husband achieved complete remission with no signs of the mutation. Prayers answered! The most recent biopsy shows no new blasts and is hypocellular which they say is because he just completed the last cycle about 5 days prior to the biopsy. So it is hopeful and a favorable position to be in heading into transplant. Admission is June 5, and the grand adventure really takes off!
I wish I could say I am feeling a lot lighter with the great biopsy news but the heaviness of all this continues to weigh us down. We are trying to enjoy a few days away but the realities of our life now come creeping back in. Given the timing of your transplant you know the feeling of what seems like everyone around us is getting ready for summer, making plans and enjoying the longer days, while we are in a scary limbo with much different plans for the summer. I am grateful, don’t get me wrong, it’s just all the little losses that add up to silent grief. I took some advice today that I heard recently and made a list of the personal losses I am experiencing as a caregiver. It helped a bit I guess as it forces me to give it voice and acknowledge it even if it’s painful. Better than getting the grief stuck in my body and unexpressed.
One more thing I wanted to mention. The team is going to put my husband on a maintenance dose of Azacitadine and Venetaclax around day 60 post transplant and after he is weaned from GHVD drugs. Do you know anything about how well people are doing on this regimen?
As usual, I appreciate your ear, your empathy, and encouragement!
Mary