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Acute Myeloid Leukemia with Aberrant CD7

Blood Cancers & Disorders | Last Active: Dec 22, 2021 | Replies (41)
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@loribmt

@lodi Just checking in and giving both you and your husband virtual hugs. If everything is on track he’ll be entering the nadir period after all of his chemo/conditioning. This is a very difficult few days for most stem cell transplant patients. Do your best to encourage him through this. It can be very challenging with mouth sores, nausea and reactions to medications during this time. He needs to let his team know of any discomfort he is having. They’ll do their best to alleviate his symptoms the best they can. There are meds for all of it!!
Then miraculously, between 10 and 14 days, he’ll be doing much better as his new cells engraft and white blood cells charge to the rescue!

You two are in my thoughts daily as I send positive thoughts of strength and courage for both of you. Lori

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Replies to "@lodi Just checking in and giving both you and your husband virtual hugs. If everything is..."
lodi | @lodi | Sep 29, 2021

Hi Lori-

You are so thoughtful thinking of so many of us; I don’t know how you keep track. Please forgive my very delayed response, overwhelmed.

Here’s where we are:
He had the conditioning chemo and the transplant, and all went very well with no complications! We were in the hospital one month and have been home for 2 weeks today. We are doing a magnesium infusion daily ourselves which was daunting for quite a while, but OK now. He just had his 5th BMB, and we are anxiously awaiting the results.

Life here is quite challenging as my partner does not like to follow orders. He insists on going for a walk alone and wants to me to go to the store without him. He is living very much in denial right now and doesn’t want to learn anything about options going forward. Before he and I researched extensively, and it was very helpful. He seems to be very depressed but won’t discuss it; he’s shut down. Watches Westerns all day in the den and sleeps (which is good), goes for a walk and that’s about it. He wants me to leave him alone.

I do everything imaginable to please him. He has always been a very difficult partner as he would be the first to admit. But now, he is far worse. He gets angry as he always used to if I slice the tomato too thick, or I don’t pour water in the correct glass. I run to the store for him almost daily since his tastes change so frequently. I spent two months total in the hospital with him; slept there every night. Nobody else I knew had done that. He wanted me there and I was OK with that.

But I am wondering about boundaries and what other people who love each other do in such difficult times. He is not interested at all in affection, which he always was. Just about everything annoys him. A peer-to-peer connection I have says he is very selfish and should be grateful as her husband was and is, but I don't think it's that simple. Am I expecting too much from him to have any empathy for my position? Is he expecting too much to think that I am here for his every medical and personal concern and it’s Ok that has no interest in me at all?

Would very much appreciate your valuable insight. We do have a therapist, but he hasn’t wanted to talk with her lately. He has told none of his friends. Neither of us have family we can communicate with, and we have no children. I have some good friends, but there’s only so much friends can understand unless they have walked the walk. I do have one very close friend who went through a transplant for Lymphoma, and she is helpful and she knows how tough my partner can be. He is a good person, very intelligent and at the core loves and appreciates me. And it’s been 30 years.

Hugs to you for all you do to help so many.

Lodi

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