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@waveg

Lori and Elaine, Thank you for letting me know your experiences. Good and bad, I’d like to know it all as I’m sure others on this forum will. With covid, the patients here don’t have a chance to chat about how we’re doing so this forum is such a nice connection for me. Today and the next 2 days are heavy chemo for me but my Mayo team is keeping me feeling great. I feel like it’s time to go and walk the dog! Gretchen

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Replies to "Lori and Elaine, Thank you for letting me know your experiences. Good and bad, I’d like..."

I should add, I’m 62 (63 very soon) and receiving BMT for MDS.

Well, Gretchen, there’s a lot more to tell that I haven’t! LOL Sometimes ignorance is bliss. Honestly, every one of us has a different experience. My second week after transplant was the worst with mucositis in my mouth and throat. Not everyone has this so I hesitated to write about it. Was readmitted to the clinic for a week on a fentanyl pump. Slept 5 days away and woke up one morning to feel perfectly fine and on my merry way. Engraftment happened and the white blood cells charged to the rescue. Reversing the nastiness in my mouth! That was my less than peachy week.
After that things went well outside of the persistent but expected nausea. I’m a walker, having walked 4 miles a day pushing my chemo trolly around the halls during AML and pre transplant. After transplant, walking was an effort and used a wheel chair to get from where we were staying a block away to get to the clinic.(Mayo Rochester is linked via tunnels to most hotels and businesses around the clinic. Really convenient). Transplant patients are actually outpatients which really speeds up the recovery time. Anyway, it took a couple of weeks before I could do the walk to the clinic and back sans chair. My Rocky Balboa moment was running up a long flight 2 months later after returning the wheel chair to the clinic.
Tiredness and weakness will be your companions in the following weeks. The most difficult thing I had to learn and was told to me over and over, was/is... Listen to your body!!! Never having been a idle person, it was difficult to not feel guilty lying around all day watching tv, reading, etc... but if you overdo the activity your body WILL let you know about that the next several days. LOL So REST and recover slowly. You’re getting someone else’s DNA in your body. You’re also having to recover from the conditioning, all the new meds, etc... So do remember that and give yourself time to recover. This is a big deal! But wow, when you recover and realize what you’ve gone through???!!! It’s the most exhilarating, liberating and amazing experience. The spirit of endurance!! (I’m 66. Developed symptoms for AML the day after my 65th birthday, January of 2019)