Bone Marrow Transplant Caregiver: Looking for emotional support

@rsp21224 Hi Michelle, there can also be some advantages to tunnel vision and not having to ‘take in the entire picture’ at one time. It can be overwhelming to try and cope with the broad scope of things.
I’m a notorious for compartmentalizing. That is my coping mechanism. I only allow a little bit to come out at a time when I’m ready for it. If that makes sense. But certainly there needs to be brief glimpses of the big picture and a positive projection for the future.

I hope you’ll find you don’t have to feel isolated. Like I mentioned earlier, you are not in this journey alone as a caregiver. And we’re also here for your husband! Though I know from my own experience, as a patient I was pretty much just along for the ride. I trusted my team and complied with all their wishes. That kept me grounded. However, as caregiver, you are carrying the full load. If I may, one piece of advice my transplant doctor said to me, and my husband, “Please, leave any worries up to me. That’s why I am here so that you can focus on rest and recovery.” That’s all I needed to know. It gave my husband peace of mind as well.
Don’t hesitate to talk to the team members. That’s what they are there for. They want your husband and you to be as comfortable as possible throughout the entire mission. I’m 7 years post transplant and I can still contact my team for support and have annual personal followups at Mayo. They want a successful outcome and happy healthy life ahead for your husband as much as you do! ☺️

So, again, please know you’re not alone. Let me know if I can help you with anything, ok?

@loribmt my husband is +4 and just starting to feel the side effects of the chemo just really hard to watch He has always been the strong one. I suffer from anxiety and so this is just very challenging for me.

Good morning, @rsp21224 I’ll be quite frank with you…the next week or two will be the worst for your husband. The preconditioning chemo is pretty harsh but it does what it needs to do in wiping the bone marrow clean and ridding the blood of any further cancer cells. This way the new stem cells will be able to engraft in a squeaky clean environment and resume making healthy blood cells.

However, during the next 2 weeks, his blood numbers will continue to drop. In doing so he will be noticeably more fatigued, nauseated, mouth sores, possible gut issues and most likely hair loss. Once the new cells engraft in the marrow, neutrophils, along with red blood cells and platelets will start production and his recovery will begin in earnest.

As the caregiver, I know it’s really hard to watch your husband as he copes with the initial stages of recovery.
My husband said he felt helpless seeing what I was dealing with. To compensate, he tried to do just way too much for me! I appreciated his empathy, however, as much as I love the man, there were days I felt smothered. And I also picked up on his helpless anxiety, which then made me feel guilty or anxious for him! (Not for me, I was just going through the motions of getting through each day, sometimes a minute at a time!)
So we worked it out that if I needed something, I’d ask. That allowed him to go for walks, cook, read, get groceries, etc., to have some moments of normalcy in his life…even though we were living in a hotel suite. We both relaxed more and recovery moved right along.

If I can encourage you to do some daily meditation, breathing exercises for anxiety, take walks, find some little creative outlets which can help you refocus your thoughts for a while, it will really help you relax a little more. You get to be the strong one…for you and your husband’s sake.
The couple of weeks ahead will pass and he’ll begin to gain strength and energy. It will be worth the 2nd chance at life that you’ll both be able to spend enjoying together.

What was your husband’s underlying cause that required this transplant?

@loribmt thank you. Classic Hodgkin’s lymphoma he is 74 years old. 2 years of treatment that failed. I am so grateful and I pray for strength daily I do try to disconnect to rest but my husband is hard of hearing and he has a speech disability so communicating for him is very difficult and I just get worried probably more than I should. Thank you for connecting with me it is helping

@rsp21224 I think worry just comes with the territory when our loved ones are involved. If your husband has gone through a couple of years of treatment for his Hodgkin’s Lymphoma, he’s no stranger to ‘some’ of the side effects of the pre-conditioning chemo. But this chemo is obviously more intense so it will let its presence be known for a short while! So hang in there, my friend. You’ll both get through this.
Having the added challenges of communication between your hubby and team would certainly lend to more anxiety for you. It might be helpful to grab a little notebook where you and your husband can jot down notes. Or you each have a little journal. That way he can write things of concern or questions he may want you to ask his team…You could have your own lists of questions/comments too. Makes communication a little easier with the team.
Just remember, the BMT team is part of your new family. They’re very dedicated but they are also not mind readers. So do not be hesitant to bring up any changes, concerns, share ideas or what have you. It is never an imposition to ask questions of the team! ☺️

Did you have to relocate far from your home base for the 100+day stay in Jacksonville?

Yes, I won’t lie either the prechemo was very rough on my husband. In fact, they didn’t think he would be a candidate for the bone marrow transplant since he was so weak. Well this practice had just started a PT program just for candidates. My husband started out using a walker and with the help of the therapist he worked himself to the point he was considered a candidate. This is a former coach who worked out a lot. And on top of the cancer he has Parkinson’s so it has been a real challenge. He is now 3 + years from transplant and doing great. It will all be more than worth it for this second chance at life. Hang in there and Lori and this site helped me through a lot. 🙏

@loribmt no we’re only about an hour away, but we are being House at the lodge here on the grounds of the Mayo Clinic so that’s really awesome. I have no complaints about that whatsoever and I had my counseling this am just certain days and times I just feel like I’m all alone, but the doctor came in. Everything is going great so I’m gonna just try not to worry so much but I appreciate you reaching out to me that it helps it really does

@jrwilli1 thank you for that appreciate it glad to hear your husband is doing good I am grateful to be able to just feel connected with you guys