Husband with AML facing a stem cell transplant

Thank you for the practical and spiritual advice. I believe He is with me and your reminder is helpful because it’s hard to remember that on the hard days sometimes.
I am so grateful to you for the support and encouragement, it exactly what I need right now. And it means so much coming from you given your experience.

Thank you! 🙏
Mary

Hi Lori,
I love your sense of humor! Thank you brightening my day!
We expect his hospitalization to be 4-6 weeks. I am thinking I will spend as much time with him during the day as I can but plan on taking breaks to get lunch, exercise, etc and meet a couple of friends for lunch or dinner now and then.
I’ve heard how difficult the first 14 days or so can be until grafting starts and I guess my assumption is he may need an advocate and or extra comfort during that time when he is most ill. I know I will be there to encourage him to walk daily and get as much nutrition as possible. I understand extreme fatigue will be a challenge, not to mention all the possibilities of other complications our transplant team had to share with us during our orientation.

My sister had an autologous transplant 15 years ago and she says her doctor told her she needed to have someone stay with her at night, especially the first two weeks, even though she was an inpatient. I have not heard that from any source about BMT or HSCT these days, have you?

It is still amazing to me that Mayo and some other cancer centers perform the transplants on an outpatient basis, again, given what I understand are the risks of complications and the various physical symptoms caused by conditioning chemo, etc. I am so glad it was a positive experience for you and your husband.

We are also fairly private people, don’t have a long list of family and friends who can be my back up as caregiver. Everyone has busy lives but I’ll welcome the times when they visit so I can take a break.

We are packing slowly and have gathered many of the items you’ve recommended and then some. I plan to decorate his room for our wedding anniversary which is the same day as the stem cell transplant, unbelievably. And I’ll put up a lot of family photos and other things to warm up the environment.

Our dog is set to be taken care of by a dear friend, but I dread the hand off on Monday. Just have to keep my head down and moving forward. And I’ll ask for lots of photos of her over the next month.

Thanks for your honest experience with how to manage visiting and giving ourselves some healthy space. I plan to bring some things to do with my hands and my mind while he rests or while I am away from him on my own. He is encouraging me to plan that as well.
I don’t expect to get bored especially with all the extra responsibilities I’ll have when we get home from the hospital. I just want to avoid burning out honestly.

Again, between you and @jrwilli1, you give me hope that we will make it through this and there is life after. Thank you!

Mary

Hi Mary, How long will your husband actually be in the hospital after transplant? I had transplant at Mayo-Rochester. BMT patients are Out-patients so my confinement in the hospital room was minimal.
However, while I was in my local hospital for 5 weeks the first time being treated for AML, I kept busy with my iPad, watching movies, binged series, reading, writing, listening to music. Pretty mindless activities because my concentration was lacking. My husband brought my small watercolor kit & paper so that kept me busy making little entries for a journal or painting cards. Recovery at Mayo after the BMT (in my hotel suite) was similar. (At Mayo we’re outpatients and recover in off-site lodging)

The first few weeks after BMT are tiresome. Your husband won’t have a lot of energy and fatigue may be his friend for a while. So he may not be up for much. For amusement while being confined, little things like puzzles, adult coloring books, Zen-doodle, jig-saw puzzles, crossword/sudoku, take an iPad, laptop or tablet, (Don’t forget a small extension cord for the hospital room)
For you as the caregiver, do you have any small craft/art hobbies that you can bring with you in kit form? For my return to the hospital for chemo every 28 days, I was admitted for a week. So while home on break, I’d package up little kits of whatever I wanted to work on while confined with small sewing projects, art work, etc.

During transplant when we were away from home for 4 months, my husband kept busy daily walking the trail system in Rochester, discovering cultural centers and museums. He did all the cooking. so he’d have snacks ready for me when I felt like eating. He’d set up a small office furnished with his laptop, stamps, envelopes, paper, scissors, tape, etc., in one of the bedrooms where he could keep up with bill paying and correspondence. He’d grocery shop, do the laundry…wow, I had it made. LOL. Anyway, for him as the caregiver he said he was never bored. And oddly, once I got past the critical first couple of weeks, the rest was just an adventure for both of us.

One little thought…were you thinking of spending all day in the hospital with your husband? My husband wanted to do that initially too. He felt that he needed to be there for some reason. We’d been married 45 years at that time and he NEVER felt the need to sit with me 24/7 during any of those 45 years…maybe the beginning when we were just starting out together. But that was hormone driven. 😅. Now at 65, it was so sweet of him to want to keep me company but I quite honestly I just really wanted to be alone most of the time so that I could sleep!!!
Pulling on white gloves of diplomacy, befitting a government negotiator so as not to hurt his feelings, we came to a peace accord with abbreviated visitations. It was better for both of us! Just a thought…
How’s your packing coming along? Did you find a caregiver for your dog? That must be pretty heart wrenching for you!

Good morning, @mary612 and @jrwilli1 You are both such rays of sunshine and compassionate caregivers for your husbands on this odyssey, as I call the entire transplant adventure. An odyssey is a long, adventurous journey with various challenges and obstacles to overcome. Can’t think of a better term for a BMT! ☺️

Mary, you’re hoping that someday you’ll be able to write encouraging notes to people about to embark on this arduous journey. You’re already helping now. By coming to the forum, asking questions and expressing your concerns you’ve opened up discussions that people all over the world are being able to read. Many won’t reply and you’ll never know how many people your replies will impact. @jrwill1 has been on the same path but now a year+ down the trail. So she is able reach out with life-lines to others who are concerned about what lies ahead. We are the village, a global village, of people taking care of each other even though we’ll most likely never physically cross paths.

Years ago, when I bought a wig (which I never wore…I loved my ‘bad-a**’ look without hair)…anyway, inside the box was a magnet for my refrigerator! Still have it up!
It says:
“One day, you will tell your story about how you overcame what you through and it will become someone else’s survival guide.”

That really resonated with me because most of the time, when we’re ill, we’re just trying to get through one day at a time. We don’t focus on what our story might mean for someone else! And wow, what a gift to be alive to tell it!
I’ve always been a very private person, even during my chemo for AML, I only told a few relatives and a couple close friends. Even the transplant was a rather quiet event. It wasn’t until I was online looking for information of my own that I came across Mayo Connect. I just happened to answer a question for someone who wanted to know if anyone had a BMT for AML and survived. I couldn’t resist answering! That was the ah-ha moment for me when I realized my story could become a survival guide for someone else.

Mary, I took up making cards and always had a stash to made up and gave them out to staff as I made them. Also my word search books were so nice and easy. Take a snack with you in case the doctors don’t come in as early as you think they should and always a water bottle. I didn’t have family close so somedays I would get pretty mad at the man upstairs when it was pouring down rain and I had to park felt like miles from the hospital. So take a deep breath on those days and ask him for help. Even though you feel all alone some days he is with you. And this and Lori were a great source of comfort for me. You got this girl. One day at a time.

Good morning! Thank you for your kind encouragement. It is my greatest hope and prayer that I can write to someone like me a year from now and say the same things you conveyed to me. I am so happy for you that your husband is doing well and you feel it was all worth it. It’s daunting to sit in this moment, with hospital admission next week, and not be anxious about all that will happen to us over the next year and beyond. One thing at a time. For now, I am focusing on the hospitalization. Do you have any suggestions for me as a caregiver to make the long days more bearable for both of us?
Enjoy the sunshine today!
Thank you,
Mary

Oh Lori your words are exactly what we need to hear right now. You should see my husband’s face as I read your posts to him….his shoulders drop and he breaths deep and says, “wow, that is so kind and so encouraging, Lori is great!”

We wish you and your husband a very happy belated wedding anniversary! How extra special and sweet this milestone and celebration are for you both. We are so thrilled for you!

Your sage advice and reflection on dealing with the losses and emotions that accompany them really help. You get it! You’ve been here and understand what this feels like. It’s such a gift to be understood and comforted, thank you.

Great to hear about the couple of people you mentor who have had good experiences with the maintenance chemo. I’ve heard it can be administered for 1-2 years, so we’ll cross that bridge when we get there. Today we got great news that my husband’s blood counts all bounced back to the normal range! Even as he still remains a little fatigued, knowing his counts rose really helps him psychologically and gives him hope that he’s on the right track.

So we are in the count down phase with admission date a couple weeks away. I’ve been preparing our list of what to pack (thank you for your resources!) and pulling together photos and other things to post around his hospital room.

Thank you again Lori for the lifeline of humor and hope. 😊

Mary

Without Lori and this site I wouldn’t have made it through some of the difficult times. So hang in there it is all worth it. My husband is a year out transplant and for the most part in remission. Still registers 100% donor. You will get there. We are just now slowly getting back to a new normal.

Hi Mary, Boy do I ever have memories flooding my brain this morning. Those months before, during and immediately after transplant were life defining for both my husband and me. I sure do remember having to put the summer on hold and feeling a sense of loss for all the things we’d be missing! I also felt a level of guilt being the one that forced us into that position. That was a stupid thought because this illness was nothing I caused nor could have controlled. But it was something we could treat and potential cure! So onward…summer would wait. And actually my husband had a great time in Rochester that summer and kept very busy.

A couple weekends a month our daughter would drive down from Mpls and ‘baby sit’ me so my husband could go back home to check on things. It all worked out so well and time sped past quickly.

Now, 5 years later, the lost summer is forgotten and I frequently consider all of the opportunities, experiences and accomplishments I’ve (we’ve) been able to have because I had the transplant. Two days ago we celebrated our 50th wedding anniversary together. That would have been impossible without the transplant. So we both happily agreed it was worth putting that summer of 2019 on hold.

I think once the transplant journey gets started, you’re going to find you have free time to zip back home to check on your house, gardens and hopefully visit with your dog for a few hours if you feel it’s appropriate. We all cope differently with extreme events and there is a mourning period for each of you because there are changes, losses, adaptations ahead. Ugh, I hate the term new normal, I refer to it as my altered reality, but you will eventually find a rhythm to your days and this will just be a different summer! Doesn’t mean bad, just different. 🙃

That’s fabulous news about your husband’s clean biopsy! A big hurdle out of the way. Though I get what you’re saying…now it’s really going to happen and feeling pretty real! My best advice…Let his team do the worrying for you. This is not their first rodeo and they have his back! They want success for your husband as much as you do.

While this wasn’t in my personal experience, I have read recently of more patients with MDS and AML, who are at high risk and having a bmt, being placed on a maintenance dose of Azacitadine and Venetaclax after transplant. It’s like ‘belts and suspenders’ to help ensure encouraging responses in high-risk MDS/AML. Two people whom I mentor locally, one with her transplant last year and another who had her transplant about 6 months ago are both on the maintenance program and doing well. No signs of relapse!

I’ll be counting down the days with you, Mary! Sending positive vibes your way! Don’t forget to breathe! 🙃

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