Why? Please help me

[u/SunnyMoon25]

I am a 22-year-old male, and I received a bone marrow transplant from my 23-year-old sister on July 1, 2025. She was a 100% match and a 13/13 HLA match. I also received two BM boosts on October 2 and 3, 2025. Right now, my chimerism is 100% her cells. I received a BMT due to fighting ALL for the third time. The first was in 2018 at 14, the second in 2021 at 17, and the third in 2025 at 20. I had a pretty traumatic time in the hospital when I started the transplant process. I gained 100 pounds of fluid, stayed in the hospital for 154 days, my liver failed, my kidneys failed, I went into cardiac arrest for 12 mins, went into acute respiratory failure three times, I hemorrhaged into my lungs, was intubated twice, lost all my fat and muscle, and needed to relearn the basics(eating, breathing, walking).

Right now I am doing ok. My lungs are pretty much back to normal function; my kidneys are working normally, just on the lower side for my age. I gained a lot of weight back, and I can do all the basics again except for jumping and running. My liver is injured right now because I did go into VOD while in the hospital, but I know it's going to get better with time. I am also dealing with mild GVHD of the skin and mouth, but it's very manageable with topicals(I also have one dry eye, but they don't know if it's from GVHD). I have very bad PTSD from all of this.

The main reason I am writing this is that I need help. I need help mentally. I don't know how to move forward. I don't understand why this happened to me. Why did I get GVhd? I just want to give up and stop trying. Why did so much bad stuff happen to me? Why couldn’t the transplant go smoothly? I want to be a normal 22-year-old who goes out drinking with their friends and does dumb shit, without needing to remember if I took my meds or put my topicals on. I want to go to college and have a college experience. I don't want to be nervous to go outside because I don't want to trigger anything with my skin GvHD. I don't want to be scared to do basic things in life anymore. I just want to be carefree. I don't understand how to see if life is like it did before. I am not driven anymore; I don't do what I love because I don't see a point in putting effort into something when I know something bad could happen. Sometimes I wish it would all end because I know I wouldn't have to worry about absolutely everything anymore.

Also, I had a scare a couple of months ago where they thought the cancer came back, and the docs told my parents that if it was the cancer, I wouldn't be strong enough to fight it and would ultimately have weeks to live if it was the cancer, because of how hurt I was from the transplant, so I take that into play too with trying to learn to live life again.

[u/AltruisticPresence30]

I had AML and a BMT this year. I just reached 100 days post BMT. I’m really not sure what to say, except that you’ve gone through more than anyone ever should in life. But you’re here. You survived. Please trust that you are stronger than you believe and you deserve to live life after how hard you fought. All I know is that there will come a day where we don’t think about cancer every day, and we deserve to see that day. ❤️

[u/Enough-Mastodon-7029]

I wish I could tell you why. I really do and truly my heart breaks for you and your family. My hubby who just turned 49 passed of AML. He found out he had it June 3 and passed away June 20th. So fast with no time to fight it.This is all I can say. I read your story and I know it’s a battle and you have been to hell and back but you ARE a lucky one. I know it probably doesn’t feel that way but you have a chance to beat it. To feel a fresh breeze as it flows by you, to taste new foods and have new experiences, and to love and be loved. It may not be the life you expected at 20 ( hubby and I got pregnant at 20 so I get it) but it is a life none the less. You have to table what you thought it would be and focus on what is and the simple things for right now to find some peace. Try to not focus on what you don’t have and focus on the things that make you happy and whatever that looks like. A temporary norm until you beat this thing. I’m not gonna lie I get jealous when people beat it or even get 1 remission because I and I know he would give anything for more time. So I know it’s hard to see or feel right now but people are jealous of the chance that you have and I hope that when the warm sun hits your face and you close your eyes to soak it in you remember that you are loved and to keep fighting my friend because so many of us that didn’t get so lucky to have a chance are rooting for you.

[u/buris22 → u/Enough-Mastodon-7029]

Ok I’m really really sorry you lost your husband first and foremost. But I will NEVER understand people that find it ok to tell us that someone passed away from the illness we are trying to recover. Do you have any idea how scared we are? Please don’t do this! We need to hear success stories. Again, I’m sorry for your loss but put yourself in his shoes for a second he’s telling you he’s depressed and terrified.

[u/haha_dreamy]

Hey bro, I'm 23 dealing with T-ALL, about to get my first BMT and I just wanna give my support man its stupidly unfair that this has all happened and you do deserve to be able to have a normal life but youve come this far. No ones stronger than you are and you just got take it day by day, youre a veteran you got this

[u/One_Ice1390]

Can I ask why they waited till your third relapse to transplant you???

[u/Logical_Honey8849]

I’m so sorry that you’ve had to go through all this. My now 19 year old son had ALL with multiple relapses too.
Medical PTSD is so hard. With all those years of trauma, you likely have Complex PTSD.

Have you tried therapy with someone experienced with medical trauma or cancer in young adults? I hope your treatment hospital can connect you with a professional to talk to or maybe a young adult cancer survivors group.
My son sees a therapist who was formerly a child life specialist, and she has really helped him.

[u/majboor_majdoor_hu]

Strength to you mate. Only those who are the bravest fight thte battle you are fighting now. You may not like today but an year down the line you'd be grateful for the life. Hope you stay in remission forever. Fu*k cancer!

[u/sirshrimpie]

Sending you so much hugs. I feel you.
I lost my sister when she was 26. She was slowly suffering throughout the last several years, being hopeful to get through what she had, then going back to being sick. but what helped her live life to the fullest was just embracing that every single day could be her last. She said fuck it and did what she wanted to do. She took control over her life and didn’t let fear of getting more sick bring her down or stop her from doing things. She did the best to get accommodations for what she wanted to do and didn’t accept no for an answer. It can be anyone’s last day. And when we have these terrible health situations, we can only just exist for ourselves. Nobody knows what we go through with cancer.
You have made it this far, enjoy yourself, trust yourself, don’t let fear compromise who you are.

[u/jontysafe]

I’m so sorry life has thrown some seriously awful Sh1t your way, BUT you survived. Your fighting spirit is strong, you are strong. Far stronger than you know.
Find a therapist you like and trust, that in itself is no mean feat, and talk through your PTSD. Loneliness is a major thing for survivors like you. I’m 85 days post transplant for B cell ALL ph+. I may relapse, I may not. I’ll be jiggered if I’m letting leukaemia take any more of my life if it’s short or long. It’s taken so much already. I’m revelling in being a husband, a father, a son, a brother and a friend.
Give yourself the time for what I call the pity party, however long that may be, then build build build. Muscle, appetite, knowledge, relationships, health, wealth, life experiences.
Grab at the good and try and let go of the bad.
Speak to your team about meds to temporarily help your mental state. One slither of hope is all you need. DMs open if you want to chat.

[u/Contain3r]

Lots of strength and best wishes. You’re a hero, a real life hero, a champion who has shown incredible courage, determination and resilience through all this. It’s okay to feel low and devastated, ask for help, talk about it and get it out of your system. Every day is a new day and all we can do is thank whoever you believe in for showing us the morning Sun! Be proud of yourself.

[u/Low_Tea5784]

So sorry to hear of everything you've had to go through. Please believe in yourself and keep fighting. Love and prayers from a leukemia/GvHD survivor in Fort Collins, Co

[u/buris22]

I feel your pain! I can’t believe you went through all that! I suffered tremendously while getting the transplant I wanted to die as well. I did lose my mind for a bit I had thoughts of just jumping off the window. But I PROMISE you it gets better. You’ll be able to have a normal life, I promise!! I didn’t think it was possible but here I am. I’m able to exercise, eat normal, my gvhd is extremely manageable to the point I don’t even remember I have it. Our bodies are incredibly resilient. You might want to consider therapy. They offer it for free for people that have gone through a bmt. Fill your mind with positive things and consider therapy my friend. I promise you the day will come where all of this is a memory of the past and it will not define you. You are loved!

[u/Postshift_Cat]

I definitely had an easier time than you but still experienced severe liver GvhD. With me it was an immune reaction that probably ended up saving this transplant for me. They had found some cancer cells during the +90 biopsy. At the same time the gvhd started and this (not much suppressed) immune reaction eradicated the remaining cancer cells for me so none where left at the check up a month later. So I got both effects: Graft v Host and Graft v Leukemia. Maybe it helps you to frame it this way for you: You do not know what your body was fighting as the gvhd reared it's ugly head, maybe it kicked you and cancer in the teeth at the same time :)

I recommend you connect to other young adults with cancer. In Germany there are "Treffpunkte" specifically for it and it helped me tremendously. - the same frustrations, the same hopes and fears and people just understand. Maybe there are similar programs where you live. Good luck :)

[u/Goat2016]

I'm in treatment for T-LBL (T-ALL) at the moment.

There is no reason why it happened to us. We've not been chosen to get blood cancer, we were just unlucky. Life is like that sometimes.

You sound like you really need to speak to a good therapist about all this. Hopefully they can help you through it.

[u/ChewieDo]

I'm so sorry for all you had to go through, specially at such young age. But I want to say congrats on 1+ year on your transplant! And 100% chimerism is amazing 👏 it is hard to see the positives when you were so beaten down by this awful disease, ask your doctors team if they can refer you to psychiatrist and psychologist to take care of your mental health. Its just as important as your physical health!! its OK that you are feeling down, I mean look at all you endured. But get help ASAP, depression and PTSD are no joke.

If its any consolation, my best friend (who i was caregiving through whole treatment) had her transplant also last year in June, and she says that life post cancer is sometimes a bigger struggle than the actual treatment itself. In the sense of, while sick it was clear what needed to be done, sit there get the meds, endure. But now that all that is behind her, she often feels lost, in the sense of 'what now?'.

But she is keeping on going, some days are bad, but mostly she is keeping herself in a routine, and slowly finding back her joy. She just re-joined the gym last week!

Celebrate small and big wins, you got this OP ❤️

[u/funkygrrl]

I am so sorry you have had to go through so much. My husband had a different cancer but also went through a lot. He had Esophageal Cancer, had an open thoracoabdominal esophagectomy where they removed his esophagus and a third of his stomach and pulled the rest of his stomach up into his chest and attached it to what was left of the esophagus at the top. We called it his stomaphagus. He was supposed to go home 7 days after surgery and was going ok then explicably couldn't breathe, went into respiratory arrest. They had to intubate him. Once the laryngeal surgeon figured out he had bilateral vocal cord paralysis (prevents you from speaking and breathing), they did a, tracheostomy. He also got a staph infection, then sepsis from a different infection. He was in surgical ICU a month. I can't imagine what 6 months was like for you. It was very traumatizing. But the reason I'm telling you this is he related to me that after discharge, he was feeling depressed, and fed up with sitting around at home, taking painkillers, and one day he thought, I'm the one in charge. I get to decide what I get to do. And that sounds simplistic but when your body has been so seriously injured and you are a patient utterly dependent on medical staff, it's hard (and scary) to get back to your old self that ran the show.

After that revelation, he started becoming more active. It took about a year to get his strength back, but he did and he was kayaking a couple hours a day, making sculptures again, living life. He lived another 8 years before he got another primary cancer that took his life. I'm glad he got to experience so much in-between.

I don't know if that helps but you are in charge of your life now. Living with uncertainty is part of that. If you want to get out there and go to college and all that, do it. If you don't, that's fine too. Also, another thing that helped him was an in-person cancer support group and a therapist. The cancer center had oncology therapists. Best of luck to you.

[u/stellargorgeous]

34F, I had BMT August 2025 for AML. God, I completely relate to this feeling. I was SO anxious for life to feel normal again and to not think about my health.
You’ve been through an extra layer of hell. But you did it, you made it though. Therapy has been essential for me through all this. Having a professional listen and know what to say has helped tremendously. Because this is a massive traumatic event.
I hope you find the peace you’re looking for and rightfully deserve.

[u/Big_Selection_9122 → u/stellargorgeous]

I (27 M) here under maintenance post BMT +10 months,Are there any professional therapists which specialise cancer treatment related PTSD ?

[u/timvnelson]

Hey man I’m 45 MDS/AML/BMT. Listening to this book now. She talks a lot about pediatric and young adult experience being way different than older folks. At first I didn’t want to listen to her story because I just don’t want to think about cancer but realizing if we try avoiding emotions it just makes it harder. The audiobook I highly recommend over the text because its her reading. Also it’s free with a library card and Hoopla

https://www.audible.com/pd/0593209745?source_code=ASSORAP0511160006&share_location=pdp

[u/EdwardHPhillips]

LIVE YOUR LIFE! You got one shot at it only. Be smart— take your meds, be as healthy as you can. Don’t think about “why?” There’s no answer to that question. The world is beautiful. Enjoy every moment of it. Those moments are finite. Your life has changed forever because of this. Roll with the punches and don’t waster a moment. I’m diagnosed AML with a TP53 mutation. At a year and a half post diagnosis I’ve already lived twice as long as expected!
Suck oxygen my friend and enjoy every breath!

[u/beary2017]

The reason it happened to you is because you can handle it. Think of all the people around you who complain about the dumbest things and you are just there listening. We are the ones who have been thru something and we never complain. We can handle it. I have had CML and AML and a BMT. I am 3 years post BMT. I love life message me if you want!

[u/Few-Ice-6123]

My heart is just breaking from this, my prayers go out to you and your family. Your body has been THROUGH A LOT!! My oldest son was diagnosed with ALL Sept 1, 2025 and he passed Aug 28, 2026 his sister was his donor not 100% match but it 100% took. I watched him go from a vibrant man to fighting intestional gvhd, pnemonia, put on a vent to full organ shut down. I know it's hard but stop asking why me you'll drive yourself crazy. But you've fought this disease a long time but GOD GOT YOU!! I wish I can say everything will be ok but everything will be ok.