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My wife has had a trial treatment at MD Anderson and did pretty well. Now she's scheduled for stem cell transplant which we know has risks. Just curious if anyone else here has been down that road.
I have looked periodically and looked again now and still don't see any PM's from you. Maybe I'm not doing something right.
As far as mindfulness, I bought her a book when she was in the hospital and have tried to get her to try to meditate for many years… no luck. I don't know but she's an accountant so maybe her brain can't work that way. 🙂
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Hi Brad, I don’t understand why you’re not receiving my private messages to you. They should be showing up in your email box. They’ll still say Mayo Patient Connect but with a private message from me. Check your spam box maybe? I replied on the 6th and also today with lengthy emails. I can post what I wrote on the open forum if needed but we should be able to do this on the private setting. I just wanted you to know that I have responded and deeply care about your situation. I want to help you and your wife get through this difficult time so that she can move on! There is hope. ☺️
Ted, you have certainly been though hell so we know where you're going at the end of life! 🙂 Actually, it appears that there's no way that stem cell transplant patients can AVOID HELL! Just from what I've observed, read and been told, this is unavoidably grueling!
BTW, our son did his residency at the Mayo in Jacksonville, FLA. The Mayo is certainly a great asset to have nearby!
I just saw what another person posted as well. It is tough to walk through all of this and grieving is an important thing. It’s okay and an expected part of this. Another element that I’ve processed a bit is PTSD – there are often unexpected thoughts and desires that can come up. I don’t want to give “advice” per second but I can share what’s helped along the way. The integration of all the things we experience and feel is vital. I have found that writing out my story has been very therapeutic as well as staying connected relationally. Often people (people I love) haven’t known what to do so I tell them what I need: will you visit me? Can we FaceTime? That takes a little extra energy but I found that rather than being upset that people weren’t doing certain things – I would let them know. Everyone responded well. People often just don’t know how to help and might stay away for fear of saying the wrong thing.
I went back and looked and I don't think I've said all this here but there is an eventual point so be patient. 🙂 My wife was first diagnosed with CLL in 2006 and got chemo in 2009/2010 resulting in remission. She was diagnosed with MDS in 2013 and treatment as manageable for about 6 years with injections about every three weeks. In 2019, her blood work got to the point where I was taking her in weekly for injections and sometimes transfusions. She hadn't had a bone marrow biopsy since 2013 so we went to MD Anderson (Houston) for a biopsy (because we knew from experience that they are very good at it) and we wanted to see if there was something to address the MDS vs just continued treatment with no improvement. That's when we got the AML diagnosis and we spent the next two months there while she was getting chemo and otherwise being treated. I was able to move her closer to home for the transplant.
MY QUESTION IS, I've been a caregiver for 14 years with increasingly more difficulty of hoping to make any difference aside from just taking care of logistics. For those of you who have had the transplant, what did you want most from your caregiver(s)? I'm sitting out in the parking lot now for 6-7 hours in 100+ degree weather while she's inside being treated and doing all the other stuff to keep things held together but, in the end, I don't seem to be able to help her cope.
@bradmn you and your wife have been through a lot and continue to face issues. I would hope that there are some close friends or family members that could provide some relief for you to do some selfcare (sharpening the saw) mentally, physically, socially, and emotionally. As caregivers we have a tendency to overextended ourselves trying to see too all the needs of our loved one, that we forget to care for self. When she is taking treatment maybe you go indoors and take a walk, maybe find a park to go sit and practice meditation or maybe somewhere to take a nap 😴 all in all we want our caregiver to stay healthy 😊. We love all that our caregiver does for us. Try some self compassion.
Brad, gosh I’m so sorry she’s having such a difficult time coping. It’s customary for a transplant team to have spiritual and mental health advisor. Someone who will help mentor her and provide some coping skills, counseling and help provide her with some mindfulness exercises. Does she have a patient portal for her BMT-team at her transplant center. Seriously, I would be in contact with them to help YOU and your wife. They can also give YOU ideas on how to cope.
Also, I’m not sure where her cells came from, meaning the cell procurement center but Be The Match foundation has excellent counselors. Just go to their website..google Be The Match and you can access all kinds of information.
Your wife has been through a great deal. Just going through the treatment from AML is challenging enough. Her body now is trying to heal from the intense chemo pre-transplant and all the new medications being pumped into her system to help her through this next phase. It is mentally and physically challenging.
There is the grieving process which takes place…for her old, predictable life. She’s is overwhelmed right now that she can’t see a future. I promise you and her, there is a future! It’s well worth the effort of fighting this challenge.
I see in another post you said BMT patients go through hell. Well, that is an interesting observation. As I said it is quite a challenge and not for the feint of heart. Perhaps that’s why anyone with a BMT is so euphoric, appreciates every moment and feels stronger and more confident when we have passed the difficult phase. The first month is the roughest and into the second things start to mellow out gradually.
It is one heck of a journey but we get the opportunity to live our second great life! Please don’t give up hope. As her caregiver, just remain stoic, a good listener, be patient. And please take care of yourself too. I know you feel helpless. My husband did too. He’s always been a man of science and engineering. Problems can be fixed and have predictable outcomes. BMTs don’t. However most are very successful but it takes time for our bodies to adapt to a completely different DNA! if there are issues with GVHD along the way, her transplant doctor and team will jump to the rescue.
loribmt, yes, I communicate frequently with the psychologist assigned to my wife and my wife has talked to her a couple of times with no noticeable benefit. I talk to her (psych) because I reach out to everyone I can on her team all the time. As I said elsewhere, I can be annoyingly persistent! 🙂 I sent the psych flowers this week because I told her she's got a very difficult job listening to nothing but bad stuff all week, every week. She says it brightened her day. Yes, they have a portal and I'm the one who set it up and only one who has used it. Not much there. I can and have emailed her MD a few times and he's good about responding as was the coordinator who we dealt with before the transplant.
Honestly, I've always been her best source of support perhaps because I know how she ticks better than anyone else. I've never seen any counselor make any positive impression on her even before BMT. She was actually doing better when she was in the hospital in some ways, it appears, because she had people constantly coming in and out and that provided a distraction. As we approached retirement in 2018, we realized that she was going to need to FIND some form of distraction because she doesn't really have a hobby and hates games (cards, board games). We previously fixed up some rental properties and she obviously can't do that now but the thing she likes to do most is paint interior walls (I got to do the rest :-)). She used to like to walk through houses under construction but that's harder now.
I was mostly just wanting to hear from other patients what worked for them, not suggestions for me. I think, in the end, there's no easy way out and you folks have confirmed for me that it's just a matter of surviving one day at a time. Things will get better in time which is what I tell my frequently but it doesn't make her feel any better today.
As for the donor, it was our son. Thanks for your response!
Thanks, Ted. My wife has been very private about all this. I had to get her permission to even tell her sister because they were wanting to identify potential donors. Our two kids know, our son was the donor and our daughter also sent in the kit. So, basically, it boils down to me. I wondered about PTSD! My wife had been writing her memoir before all this most recent phase started but she has quit writing. I know that part of it is lack of energy (she still sleeps a lot) and part of it is that she doesn't want to be negative… and there's not much positive in her world right now. Thanks for your response, it helps me to better understand what people experience going through the BMT process.
rwalkie, it's common for people to tell me to take care of myself… thanks! I was swimming a mile a day back before the shutdown and then I bought bike. Now, I'm getting back more into weight lifting (age 66) and am building a lifting platform in the back yard. I also have a garden and lots of household chores to keep me busy. Nope, no relief for me. We even told our two kids to stay away! We don't want to risk any exposure. I do curbside for groceries and anything else plus Amazon. When we walk our dogs, we stay far away from anyone else but, luckily, we rarely see anyone. I'm still hanging in there pretty good, my wife is my focus so I'll do whatever I can to help with her situation. The whole COVID-19 thing just makes the world a much more difficult place to be right now from a number of perspectives.
Brad- what strikes me significantly is the she has you. What a gift. I know that you said you are asking all of this for her and not yourself and I can appreciate that deeply. And … as others have shared, please do take care of yourself. It seems you are doing that well.
I can remember days when I had so little energy and just wanted to lay in bed each day. Making a few small goals each day was really helpful. Sometimes – taking a shower was on the list! And then perhaps just walking to the end of the block. Another thing I found helpful was to ask myself each day, “what do you want?” Any answer was ok – I just needed to make sure I was living from a deeper place and being honest about what I was feeling. Sometimes there can be a conflict between what I really desire and what I am actually doing each day.
Ok, Brad, now I’m getting a little better picture of you and your wife’s pre-transplant life and maybe in a position to give more appropriate answers to help out. First, It’s great you’re in contact with her physiologist and the flowers were a wonderful gesture. I’m also relieved that you are getting feedback and responses from her team so that you’re being informed as to what’s going on in her recovery.
From my perspective as a transplant patient, you’re doing everything right for your wife. What is her name, by the way? She sounds like a person who loves to be in charge of her life, energetic and enjoys physical activity. I can tell you right now at this phase in her recovery, it will take months for that energy to return. At this point, her hemoglobin count is low so any activity, even as little as walking from the sofa to the kitchen can deplete her energy in a hurry. So that is a big frustration to her I’m sure. Within another month, she’ll be amazed at the progress she’ll make!
The most important thing is rest. “Listen to your body” was the most difficult concept for me over the past year and even now! My nurses drilled that into me every day. It is a mantra on my shoulder all the time. Rest, is imperative. Her body has been through a traumatic shock and it will take time recover. She had to deal with the treatments for AML, the rough chemo for the transplant and now the transplant itself, along with all the medications running through her body. You mentioned the shaking from the Prograf. Yes, that is absolutely possible. It is often related to the amount in her blood stream at any one time. It is carefully monitored with her blood tests and because it’s early in her transplant the doses will be tweaked accordingly. Even other medications can cause it to stay in her blood stream longer so it takes a lot of adjusting to get the dose steady.
But in the meantime she may have those trembles. Believe me, I know! It’s disconcerting at first. But it will go away when she no longer needs it. I’m an artist and I can tell when my level is higher. I used to hate it but now I actually enjoy the wanky lines in my works. Lemons out of lemonade. ☺️
To pass the time away my first couple of months, I listened to a lot of audio books, though honestly it took repeated attempts as I’d nod off every single time! I tried to do crossword puzzles, spent time just doodling on paper and later used my little travel watercolor set. That was a great diversion. The most disturbing thing I did was to watch TV. LOL. HGTV…never watched it before but became hooked. Glad that passed. 😉
I set daily goals of how far I wanted to walk…and some days that meant as little as 1, 2 or 3 circuits around the rooms were I was staying. And, there were days where I lived 5 minutes at a time…if I could just get through 5 more, i can make the next 5. So your wife will run the gamut over the next few months but with you providing a steady support network you’ll both get through it.
One year ago today I was on day 13 post transplant. There was nothing anyone could tell say to me which would have me believing I’d be feeling as good as I do today! My life is pretty much back to normal and I feel as though nothing ever happened! Before AML knocked me off my feet in 3 weeks time last February, I’d been a healthy, 65 year old, walking at least 10 miles a day, exercised and was unstoppable. I’m now back to at least 6 miles daily though the pesky, “Listen to your body” has me taking afternoon catnaps which I never did before. So there will be adjustments ahead and the occasionally GVHD issues which pop up. They get handled and then life resumes. Your wife will just have to ride this out but there Is life after a BMT and it’s amazing!! She’ll come out stronger, more confident and amazed at what she has accomplished!
Just to be clear, I said I am in touch with her psychologist. 🙂 Maybe what you meant.
As for HGB, her former, weekly oncology "friends" were amazed at how she could go work out in her exercise class four times a week with her HGB below 8! As of Thursday, she was at 6.1 She's approached 6 before but I think the double whammy of the whole emotional ordeal plus low HGB causes her to be less energetic than she would otherwise be.
Yes, she was a pretty independent person, CPA and PhD. Now she can't remember what happened 30 minutes ago sometimes and I'm gladly doing most everything for her at the moment. She tries to do what she can and she's been going out twice a day with me the past few days for short puppy walks which is encouraging! She is getting better and today has been the best day in a week. I'm extremely encouraged!
Thanks for your feedback and awesome to hear how well you're doing!
We just heard "You'll Never Walk Alone" on the TV and we both said that was the perfect theme song for this phase we're going through. I looked on Google and found that Josh Groban did this on one of his CD's so I just bought it for her. 🙂 Not quite as good IMHO as the original version from Carousel but still pretty good.
Yes, I meant psychologist! LOL. Thanks to “speel cheek” it decided to change the word. I’m so happy to hear your wife had a better day!! That’s very encouraging, especially with being able to take little walks to get out of the house. Hopefully, she’s turning the corner now and continues to improve daily! Such a relief!! ☺️
My husband is coming up on 2 years in September for a Allo transplant for AML with FLT3 mutation highly adverse. He has had a couple of hiccups with GVHD but he is doing very well with no signs of the AML. Every person is different but if you listen to your team your wife should do very well.
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