Husband with AML facing a stem cell transplant

Hi Mary, I just feel it’s time to check in with you and your husband this morning….yes, I am one of those whooo whooo people who feel ‘vibes’. 😅 I know we talked about your husband’s transplant happening on your anniversary but I don’t think we discussed an actual date. So, where are ‘you’ in the process? Pre-transplant testing? Preconditioning happening or is this a week or so out yet? Inquiring minds want to know. ☺️

Good morning Lori!
Thanks for checking in. We are at day -1 today! Tomorrow is our 19th wedding anniversary AND my husband’s second birthday! The transplant is scheduled for 3pm. The chaplain here will be giving a blessing and I hope to sneak a little slow dance in with him when we have a few minutes to ourselves. So our odyssey continues! He is stable at the moment. The only hitch has been some high blood pressure readings but he has also had a lot of fluids and Busulfan and Fludarabine “clean out” chemo. Today he started Tacrolimus and Methotrexate starts day +1.

I expect the next week or so to be rough for him so I’m trying to relax into that and know the team here has tools to help him through it. Plus I will be here to help him be as comfortable as possible.
Renting an apartment a few blocks away has been a life saver for me. I’m doing his laundry every day and able to get out for walks instead of spending 2 hours in traffic from home in the morning and evening.
This remains surreal to me. Every now and then I feel stunned that this is our reality and I know the same is true for him. But we are resilient and are adapting.

I decorated his room with photos of our family and friends. I hung hummingbird decals on his windows and I am bringing a Happy Anniversary and a Happy Birthday sign to hang in the room. All little ways of staying positive and bringing a little cheer. The summer sunlight and longer days sure does help too.

Wishing you joy and the best of health as you near your stem cell transplant anniversary!! 🙏

Mary

You and your husband have the right attitude! This is an adventure in healing. My husband and I had to relocate to Rochester for 4 months for my procedure. Intitially, the thought of that just left us wide-eyed…but we’d weathered a lot together over our years and this would be a new adventure, medically related with new vocabularies, meds we’ve never heard of and an experience like no other. But wow, was it worth it!! I was super healthy before this all happened and super healthy again.

My transplant doctor gave me all the details too. And when I point blank asked him if I’d be here in 2 years if I didn’t have the transplant, he gave the ‘iffy’ move with his hand. Then I asked if I’d be here 5 years from now. He replied, “No, you won’t”. Well, here I am five years later, durable remission, 70 and still putting on 7-10 miles walking daily! So, your husband has the spirit of endurance needed to embrace this journey and you two will plow right through it! 😉

Being an inpatient for 4-6 weeks will take the brunt of the care off your shoulders. Those are the toughest weeks so by the time he goes home this is all manageable and less ‘tense’ with the day to day business that can come in the first weeks. I actually didn’t mind the outpatient experience. We were right next to the clinic in a hotel and very convenient. If I needed to be in the hospital for anything, I was immediately admitted. It was an amazing experience at Mayo. But each clinic has their own protocols and Northwestern will take outstanding care of your husband and you. ☺️

It’s my pleasure to be able to mentor others going through the same process. I really do feel I have found my voice here so thank you for your kind words. I didn’t have anyone I knew or could talk to before my transplant or AML. It can sure help to be able to speak with someone who has walked the walk.

Speaking of! There was a cool article written a couple years ago about a young woman I mentored who had AML and a SCT. I seldom get to meet someone I mentor in Connect personally so this was a rare treat. You might enjoy reading about Sky and our parallel journeys.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
So don’t be shy about asking any questions. I’m here and so are many others to walk you both through this.

Thank you for all of this. I am on the evaluation side of things right now. I am 30 miles from the UNC cancer center in Chapel Hill NC. My.next big worry is cost. So far I'm fortunate.

Hi @rayj. I just replied in another comment to you. I’m just tossing this site in along with the others I sent you. This has so much information for new SCT patients. There is a section on finances. Most insurances pay for the procedure and followups.
Here’s the link to a really helpful site called the nbmtLINK. https://connect.mayoclinic.org/discussion/bone-marrowstem-cell-transplant-informational-website/

And here is the link to my reply in your other post! https://connect.mayoclinic.org/comment/1085653/

We’ve got your back here. So read up on all the material and don’t hesitate to ask anything that comes to mind!

To you both! My days following the transplant included 2 more rounds of a chemo for a research study i was in. Fatigue did get me. Partially due to the nausea meds, one being Compazine which made me tired. I also had nausea. Yikes for a couple days. The meds did not stop it. I was then given a nausea med called "emend" that was good for 72 hours. It worked. They said at the City of Hope that it is only used in tough cases. Well, barely eating for two days is not good. I say always tell the daily visiting DR and your RNS how you feel. Mine listened. After the 72 hour pill, it was for my graft to take hold. I had my transplant the 9th and was out of the hospital the 29th.
By the 29th my graft numbers were very good. I had MDS, so my symptoms were a bit lighter as time went on. No cancer cells to fight. Just following all the guidelines for th4e rest of my 100- day journey and beyond.

rayj and Mary, I hope you keep all of us updated so we know what is going on and we can support you. Lori always has bunches of info to share. A Godsend.

Good morning!
Thank you for your kind words and encouragement. My husband’s transplant went well yesterday, no complications! Actually, it was quite moving. The chaplain said a beautiful prayer just before the stem cells were infused. I can’t tell you how it felt to watch the blood move in the IV line and into him. My heart was bursting with gratitude and hope.
After a couple of hours, he ordered pancakes and potatoes for dinner! I felt all the prayers being sent up for him/us, truly.
Another fun sign we got was that his nurses’s mane was Abby. That’s our beloved dog’s name too. So we felt like our “pack” was together in spirit! lol.

My husband is good about telling the medical team if he has any new symptoms. We realize how important that is to stay ahead of any complications. I also know that the next couple weeks will not be a walk in the park for him. But I trust the team caring for him to help as best they can to keep him comfortable and nourished. Thank you and @loribmt for generously sharing your experiences and for your support.

Here’s a photo of one of the walls in my husband’s hospital room. We not only celebrated his new re-birth but also our 19th wedding anniversary yesterday! Such a blessing.

@katgob I pray you continue to heal and recover nicely!

Mary

Hospital room decor!