My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

I also couldn’t do anything I used to love doing before my diagnosis. I only had enough strength to breathe. My head felt like it was stuffed with cotton balls. I couldn’t think or make decisions. That will take time to recover.

I normally don’t like watching tv, but I watched a lot of HGTV shows when I was hospitalized. It was mindless entertainment, and I watched happy people looking for condos in the Caribbean. My husband hated it, but it helped me escape my sad reality.

To my husband’s consternation, I kept talking about moving away from our dreary Midwestern weather. Several years later we moved to Arizona! Lol

I have been to Arizona several times as I have family there. Every time that I step off the plane, I always feel like I am coming home - (weird?) Summers are too hot for me there though so I always visit during the winter months.

Watching tv can indeed be a mindless distraction but so far, my son doesn't even engage in that.
I'm very careful not to push him too hard right now ; just keeping up with the encouragement.
Thank you for sharing your journey with me 🙂

Good morning! Thanks for sharing your journey with your son, he is blessed to have such a strong supportive family and network. And I am glad you have found an online support group. Sharing your story and hearing from other family members is so helpful to walking this journey.
I can sense your concern about your son’s disinterest in his computer and getting involved with a support group. I will share with you that when I was going through the pre- and post- transplant time, I had no energy to do anything other than to try and get the needed protein in every day and walk a few steps in my home. It is hard to believe how quickly you go from a robust, active work and home life to a very debilitated state. And this certainly takes an emotional toll, as well. My life as I knew it was gone, because of this illness and ongoing treatment. And most everything in my life was now out of my control. So it takes time (months+++) to find a new foothold and rebuilt your “new” life. And that happens after the treatment is done because during treatment, I was just trying to put one foot in front of the other. Everyone wanted me to recover and get back to “normal”, but I had no idea what that would look like. I was blessed and family and friends who walked this road, slow step by slow step. Many of them were health care provider colleagues and knew what was ahead.
This is a whole new world for you. Take care of yourself, ask for help and support, and give yourself grace on the days where you feel frustrated. I am sure your son knows you are doing your best Mom every day. Keeping you and your family in prayer.

Hi
I’m Jennifer. I had my BMT in Jan ‘23. Prior to my diagnosis and extensive chemotherapy and ultimate BMT, I was very active and had a great creative career. I loved dreaming of new creations and thought that at least in the hospital I’d have time to create in my head. The treatment totally took that away from me. I don’t know if it was the extreme exhaustion or that nothing in my life was the same. I couldn’t plan, couldn’t create and couldn’t think of a future. During my recovery in bed, I was weak and nauseated with absolutely no appetite. Finally, one day after months of no energy and no appetite, I awoke with the sense of energy running through my body. I began to do things I would normally do at home. I also began to dream of creating and planning a future. Now I’m getting all of my vaccinations again and that can zap my energy but I know that I have a future and I can still dream and create. Your son is in that limbo state. It takes time to regain the energy to connect with family and friends. It takes a lot of energy and effort to just be around other people who love and want you to get better. TV was my only outlet for my suffering. It will get better. Set very small goals. One of my goals was to take a shower and get dressed everyday even though that effort exhausted me to the point I just crawled back in bed. Prayers for recovery ❤️‍🩹

Hi Rosemary
Jumped in here, I am looking at gift of life transplant house too. I'm having a stemcell transplant. Can you share with me, the pros & cons of staying there? We're you in the older home or newer transplant house?
Thank you!!
Bev

@jenmkr63 ,

Nice to meet you and thank you for sharing your journey with me! So glad to hear that your recovery is going well. You're right : my son IS in limbo right now and has zero energy. There are days when he doesn't answer my texts ; I immediately know that he is having a bad day.
Still in early stages of recovery (Day+32) , he has no appetite and still nauseous.
The most difficult part of this is that he is hospitalized in another state and our visits to him have been sparse. All I can do is pray through my tears.
Thanks for your insight & prayers!

Welcome to Connect, @jenmkr63 I’m so happy you found us and thank you for sharing your BMT experience!
That’s a journey like no other, isn’t it? It’s difficult to explain what those first few months are like for anyone who hasn’t gone through the process. We truly don’t know how strong we can be until it’s the only option.

May I ask what required you to undergo a BMT? Are you experiencing any GvHD issues?

Hi!
I was diagnosed with follicular non Hodgkin’s lymphoma 3 years ago at 57. I had an enlarged lymph node in my neck. For that particular diagnosis there is no treatment that is needed right away. The oncologist just arranges frequent blood tests and takes the watch and wait approach. It’s a slow growing cancer. However, after the first year I developed another type of cancer- Acute Lymphoblastic lymphoma (a lump on the roof of my mouth developed over night)- a very fast growing cancer. So I basically had 2 types of blood cancer. They treatment needed was very extreme chemo and after that I would need a BMT. This treatment took 2 years. I just got my BMT in January. I came through it without too much GVHD. I had some body aches that were pretty bad that lasted 1 week and some sores in my mouth that did not help with eating! I lost 30 pounds pretty much muscle. I was in the hospital for 5 weeks. When I got home I was extremely weak but so happy to be home and not hooked up to any IV machines. Freedom helps a lot in recovery. It’s a very long recovery that is hard on our loved ones. The reality for the patient is that it is a lifetime of recovery really- with the threat of relapse and GVHD always an issue. Just as I was feeling more energy and a returning appetite (in July) I developed some chronic GVHD issues. It started with my skin- I started to get spots that itched on my abdomen and back and eventually down my legs. I started putting tacrolimus ointment on them - after 4 weeks they have slightly faded and are no longer itchy. They haven’t gotten worse but they are still there. I stopped putting the ointment on. I also developed new mouth problems. I have really sore gums, dry mouth and little pimple like bumps that hurt like hell. Thus making eating and swallowing very difficult. I’m still on my immune suppressant drugs but next month I’m probably going to be weaned off them. I think with the kind of cancer that requires a BMT it’s difficult for the patient and family/friends to understand it’s a very hard and difficult road - physically and emotionally. As with other cancers you can go through surgery/chemo and be cancer free. But with a BMT it really is a lifetime of unknown. You can develop GVHD at anytime… even years down the road. I get a little irritated with my husband asking how I’m feeling- especially if I’m having a bad day. The worst is he wants to know I’m getting better so I’m constantly getting the question “how are you… any better?” I don’t want to think about that question every day. It’s so hard on those we care about and there really isn’t too much you can do. I think just acknowledging the fact that they have been dealt a very bad hand is all we need. Someday they will wake up with more happiness, energy, and Hope fore a future. Until then … lots of ice cream ❤️

Prayers for you and your son. As a mom I know the heartache and anxiety you have concerning your son. My heart aches for the two of you. I woke up at 3 am as I do most days and added him to my prayers. It will get better. God will take care of him. I know God helped me. It was strange though that while I was in the hospital not knowing my future It was very difficult to pray for myself. I couldn’t come up with the words. The only thing that I could do was sing the words to, “Jesus Loves me” over and over in my mind. It has to be awful being far away from your son at this time. I pray he is 100% healed and that he feels Gods love and power holding him in this difficult time.

Hi @jenmkr63 It’s quite amazing what our bodies can go through and overcome, isn’t it? From experience, it can take a good year or so to start feeling appreciably better…to the point where you start believing! Finally being off all the meds also makes a huge difference.

I was on my immunosuppressant for 2.5 years and with that I was also on 2 antibiotics, antifungal, antivirals and other meds until I tapered off the Tacro. That went up and down a bit and then eventually off. I did start my vaccinations before that though, which is important. Compared to what I went through, I really thought I felt great! But when I was finally off everything, wowzeeee. Game changer!

I know the irritation you feel when people keep asking, “how are you” every day. You simply don’t know! My husband did that too and I tried to not get impatient with the daily question. It’s so difficult to get across that some days are stellar and then we over-do…the next 3 days it’s all you can do to drag your bones out of bed in the morning.
It gets better!!! Your first year is the toughest so just keep doing and listen to your body. Four years later, I feel like nothing ever happened.

In regards to the tacro ointment. It wouldn’t hurt to keep up with the daily applications for awhile. I was told to use it for weeks beyond when the area healed. It works slowly but does wonders for keeping the inflammation under control.
Did you mention the sores in your mouth to your bmt team? There is a great steroid mouthrinse called Dexamethasone. (Picture below) The instructions are to take .5ml Am and Pm. Rinse for 30 seconds only, then spit it out. It’s amazing how well it worked on my mouth sores.

I also needed to use the tacro ointment off label and apply it to the areas on my tongue. It can be taken concurrently with the Dexa mouthrinse. Talk to your doctor! You don’t have to suffer!
We have been given a second chance with life. Yes, it comes with some potential side effects and risks. But we are here! We’re living our lives and for me, I’m relishing every day.
The keys are remaining flexible, keeping sense of humor and having a sense of adventure. Because no two days are alike. 😅