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Husband with AML facing a stem cell transplant
Hello!
My husband was diagnosed with secondary AML with 2 high risk mutations in January. The prognosis is not good. He is being treated at Northwestern medicine in Chicago. He is responding to the treatment after the first cycle but not full remission yet. They are recommending a stem cell transplant. I’m full of all the feelings! Scared, but trying to trust that my faith will get us through this.
My question is related to caregiver support after the transplant when he is discharged home. We don’t have a lot of family or big social circle nearby.
Any tips on the types of things we should start thinking about in order to give me and my husband the support we will need?
I found this group through the very hopeful messages of @loribmt. Thank you for your positive messages of hope!
Wishing everyone here only the best outcomes and graces!
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Hi Lori,
I will need a donor for my stem cell transplant. It actually feels quite hard to decide when to do it because right now I am stable with my CE and feel well. , But my doctors are concerned about waiting because they say it can turn into AML, my eosinophils may start going up or my other health issues may become a problem (lupus and HLH). So I’m scared to wait and scared to do it because it feels wrong to do such a risky procedure when you feel good; but I also understand the importance of doing it when you are healthy. If you have any word of wisdom they’ll be much appreciated.
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1 ReactionYou managed to move me to tears this morning, Teresa. Of course, I get weepy with dish soap commercials…😉 But thank you so much for this truly special post.
Most of us who are in the forum are here because we or family/friends have been tossed into some medical event that has us scrambling for answers. It’s like being lost in a huge wilderness with no idea which way to turn to reach a sanctuary. So it is up to those of us who have found our way out to grab others by the hand and offer them guidance and hope. You have done the same thing for others with your personal health journey, Teresa.
Fred Rogers often told this story about when he was a boy and would see scary things on the news: "My mother would say to me, 'Look for the helpers. You will always find people who are helping.' To this day, especially in times of disaster, I remember my mother's words, and I am always comforted by realizing that there are still so many helpers — so many caring people.”
Connect gives us all the opportunity to be helpers. ☺️
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4 ReactionsHi Lori,
After reading this post, I read several of your posts in this discussion. I was so impressed with your ability to get into the shoes of those you communicate with in this support group. I especially liked your comment in one of the posts when you referred to their experience as an, "adventure in healing." What a great phrase to describe this procedure which needs so much endurance! Thanks for all you do, Lori.
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1 ReactionFor me, finding a caregiver was the hardest and most expensive part of post-transplant care. What worked was assistance from my sister in searching for caregivers on care.com. She is good at interviewing people. She will ask an open-ended question, and then stop talking. In the ensuing uncomfortable silence, people will start blabbing.
I advise casting a wide net when asking for assistance. Ask your friends and relatives, sure, but also ask them to ask their friends and relatives too. One of my caregivers was the daughter of a cousin (second cousin to me?). She was great.
I did not have success with agencies. In my experience I did not need an RN or CNA, but I did need someone available constantly for about 3 months. What I needed was someone who was courageous, conscientious, calm, well-organized, had some positive energy, and was energetic.
I needed help with transportation, shopping, meals, household maintenance
(like cleaning), going to the pharmacy, and medication management. I had so little energy that I could not have managed the 38 pills per day without help in planning and keeping track of it all.
Don't underestimate the level of fatigue of the patient. One day I got out of bed and made my way to a couch to watch TV. I sat on the couch for 30 minutes staring at the wall, but I did not have sufficient energy to reach for the TV remote to turn it on. After 30 minutes, I got up and went back to bed. That is an example of why the patient needs help.
I asked a lot of people for help, and sometimes I got it. I asked my doctor what I could to to increase my chances of survival. He said: Keep all your appointments, and take the medication. I have found that doing what your doctor wants you to do is a good survival strategy.
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3 ReactionsThanks for your note. Stay in touch and reach out whenever you need us.
😊☘️
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2 ReactionsHello! Thank you for reaching out in response to my post. I am so happy to hear you are a 10 year survivor! Such a blessing! Your experience and life are inspiring to those of us on this end.
Thank you for sharing your wisdom and reminders to have humor, grace and faith. These are things I value and try to invoke at every turn. We are only human and this road can be tough, so the grace to let the bad days go and wake to another day of hope is so important to remember!
I love the idea that all our days are already written because it is a meaningful reminder to let go and trust the process of life. It can be so painful but it’s support like this that helps me keep my head up.
Wishing you a good week.
Thanks again!
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1 ReactionGood morning Lori!
Again, I am so grateful for your reassuring guidance and suggestions. Makes me feel not so alone in all this.
Your encouragement is gold and just what I need to hear now.
My husband is starting cycle 2 of his induction chemo today! Thankfully this chemo cocktail is well tolerated. He will have another bone marrow biopsy on day 21, April 8. He achieved partial remission with 2% blasts from cycle one. They detected the mutations and chromosome changes in the biopsy so she wants to try to clean that out with this cycle while the transplant team works on finding a donor. We don’t know how long that will take. But we do know the transplant doc thinks my husband is a good candidate for the transplant which is a step in the right direction!
My faith is strong and helps me stay in the present, with hope in my heart for coming out the other side. I love your advice to trust the process and his care team. 😊
I’ll keep you posted!
Thank you for being here Lori ! 🙏
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1 ReactionGood morning, Mary. I read your lovely reply yesterday. That means so much to me to know that I am making a difference. It is my goal to offer calming reassurance and hope to anyone facing AML (or any leukemia) and possible bone marrow transplant, that there is life on the other side of all the medical drama.
Aw, wasn’t that just the coolest story about Sky? I was so honored to have been part of her journey. It shows the value of this forum, where we members can come together to help guide others through uncharted territory.
No doubt, both you and your husband will have a ton of questions popping along the way. There will be new terms and vocabulary tossed at you, medications, procedures, tests, etc.. Initially, it will feel like everything is coming at you all at one time and a bit overwhelming. Trite but true…take one day at a time and things won’t feel quite so daunting.
As your husband’s caregiver for the SCT, you’ll be involved with all of his appointments. I’m guessing you already have one but just in case, tuck a little journal in your bag for note taking. Don’t hesitate to ask for clarification from his team members. BMT/SCT teams are amazingly compassionate, caring people! So they will be your husband’s new family. There may be some rough days but wow, when your husband comes out on the other side of this, he’ll feel rather invincible. We chimeras (people with 2 sets of DNA) have super powers! 😉
In the meantime avoid Dr Google, just trust the process and his doctors. Your husband is being well taken care of as he goes through his AML treatments. His new future awaits. ☺️ Keep me posted on his progress please! When is his next round of chemo?
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2 ReactionsLori,
Thank you for sharing the inspiring story about your role in mentoring Sky as she faced and eventually came through her stem cell transplant. God bless you both!
Wow, I agree, it certainly feels like you were meant to help and support all of us here as we embark on our respective journeys on this daunting road.
I have read and re-read your words today and I can’t tell you how much they help me feel calmer and less anxious. You speak with hard-earned authority about this experience but your compassion and positive attitude are the most inspiring.
I feel a little stronger knowing you are all here to support me and by extension, my husband, as we prepare ourselves for what is necessary to endure for his second chance at life.
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3 ReactionsI lost my very long hair with breast cancer in 2021. Now I will lose it again in 2 weeks, but this time I will cut a should length curly wig and no one will be the wiser. It barely got to my shoulders in 2 years, so one more time I walk the road from bald, to fizz, to my hopeful curls and dozens of hats I know own and wear.