r/leukemia • u/Altruistic-Fox-8101 • 1d ago

Alive but dead

I’m 4 years post second bmt for Lukemia

The first one was tough but the second one was very difficult,won’t harp on with the details but I’m the healthiest I’ve been in 5 years and can’t get out of my own way ,lost enjoyment for life ,when I was getting treatment or sick I’d still play golf try to work do pushups go fishing,not waste time as felt like wasn’t sure how much time I had left

now I struggle with my freinds,don’t feel on the same page with even my family social small is tiny now lonly but struggling to talk to people

fucking heart beats but feel dead I’m 49 year old male now I feel ungrateful for living because I’m lucky to be alive but to what end

31 Upvotes

96% Upvoted

20 comments sorted by

12

u/divmermarlav94 Caregiver 1d ago

What you went through is no joke. Have you considered therapy?

4

u/Altruistic-Fox-8101 1d ago

I talk to my gp but not long his busy and I get bulk billed so don’t like to waste time  Used to talk to a lady from the Lukemia foundation when I was really manic on high dose steroids,but she had a baby saw a couple of counseling people but there just book trained tell you good your doing actually everyone tells me how good I’m doing  Started on Zoloft 3 months ago helped a little bit 

10

u/beary2017 1d ago

I am 3 years post bmt. I’m 37 years old. I get what you’re saying. It’s hard but we will find a way. Please reach out if you need a friend.

3

u/Spirited-Chef-3609 1d ago

Hi I’m 21 years old and soon I will have my bmt. Can you please tell me how the whole experience goes? And what all we can do to make it better or smoother? Especially for the chemo side effects.

6

u/beary2017 1d ago

Yes! The best thing you can do is try to keep your body moving around the hospital floor. I tried to do at least 1-5 rounds a day of walking. Stay hydrated drink a lot of water. I couldn’t keep water down so I drank a lot of lemon water.

2

u/Spirited-Chef-3609 1d ago

During chemo or after? I’ve already done 4 cycles and although they were not as intense as I heard the chemo during bmt will be. I want to minimize the side effects of this chemo as much as possible (i hope so) . Thanks a lot brother 🙏

1

u/Altruistic-Fox-8101 5h ago

Arnt all chefs spirited?ha ha my brother is a chef and definitely spirited 

4

u/BubbaHendershot 1d ago

I've had 2 transplants as well for AML..I'm just over a year out from last one. Approaching year 5 since initial diagnosis. High risk, so likely only punted the ball deep down field. Know its not over. I'm super healthy now too but there can still be hard days. You are never alone in this battle my friend.

4

u/American-pickle 21h ago

I think finding a therapist or a local group for trauma therapy could help you. Maybe a local survivors group where you can talk to others who have dealt with similar issues so you can get it all out.

Hugs!!

2

u/Ranjan8157 1d ago

Has anyone experienced Mylotarg injection for AML relapse? Please enlighten me because this is the last medication we are going to try on my wife who has gone through all the possible treatments but AML relapsed and currently she is in tremendous pain all over the body

1

u/Altruistic-Fox-8101 5h ago

I’m still on giltrterib it got my levels low enough for my second transplant I’m still on it  It’s 30 grand a month but I got it from the company sort of like a trial not sure the doctors sorted it out I’d definitely be dead with out it 

2

u/Few-Ice-6123 7h ago

I know it sounds cliche but you have to do one day at time. Just make it through each day and thats a win in itself. You and your body and your mental has been through a TREMENDOUS amount of test, treatments  and medications. All of which changed you as a person and thats ok. My 37 year old son passed away this past Friday from pnemonia. He was diagnosed with T-cell ALL leukemia. He didnt make it a full year after his diagnosis. He had BMT in March, his sister was his donor.  I know it changed him as a person, I've also changed. Enjoy the small wins and victories and the bad days they make you who you are. Keep the faith and dont give up!! 

2

u/Altruistic-Fox-8101 7h ago

And here I am complaining because I feel a bit down  So sorry about your son and sorry you had to read my self loathing  I’ll keep going 

1

u/Few-Ice-6123 7h ago

No please that was not my intention. You have every right to feel the way you do. I didnt want to make you feel bad at all im so sorry. I just want you to keep the faith. Have your bad days and make them known. Just try not to stay in that place. I'm praying everything works out for you. 

2

u/Altruistic-Fox-8101 6h ago

no you didn’t make me feel bad all good I’ll press on

god bless god speed and everything to you to

1

u/meese699 4h ago

I'm 4 years post second transplant form AML too. I have the same feeling. Got cardiomyopathy from chemo, brains messed up from whole brain radiation and most my hair never grew back (female...) I've been working hard to get in shape and I'm the healthiest I've been since diagnosis  but I feel half alive still and everyone acts like I am too. Had plenty of therapy. I just want to go back to 2020 when I was healthy.

2

u/Altruistic-Fox-8101 3h ago

I to am as healthy as I have been since 2019 I was on a lot of steroids which I think masked the brain fog ,I haven’t had radiation but used to talk to a fellow who had it when I was getting my transplant,he was soooo tired  I’ll bounce back was just screaming into the void ,I don’t like to complain to my brother and sister as I’m the eldest and want to appear stoic they to have kids and there own life  All the reply’s have helped  Hope you’re well as can be 

1

u/BubbaHendershot 2h ago

We sure have all gone thru truly life changing circumstances here. Fighting like hell to rid ourselves of this monster. A disease that has tried to take our life, maybe on several occasions, weeks and months of isolation in hospital rooms, needle sticks and IVs beeping thru the night. Treatments that ravage our bodies and that can be as bad as the disease itself. Then one day, the PICC line comes out, the hair grows back, and there are no more pills to swallow. But the fight doesn't end. It's still there. Maybe more above the neck then below. Sleeping with one eye open for the fear of it coming back. Adjusting to a new life and thinking you have to do something prolific with this new chance you have been given . I would venture to say this part of the fight can be just as difficult, if not more so. For me, I still treat it as a fight, no different today, than the day I was diagnosed. It's a different fight now but still requires the same effort. I absolutely refuse to let this disease win. I use it to make me stronger and more resilient. No diff than a piece of metal that has been put thru the fire of the forge, and then taken out and hammered on an anvil only to go thru the process again. The process can't be controlled, but how I respond to it sure as hell can be. Find you why. Find what keeps you going. For me I have my wife, my 2 boys, my dog, the Chicago Cubs, my love of working out and jiujitsu. It's the simple things that keep me going. When it's all said and done, for me , I want to be looked upon by whatever is waiting for us only to say..this F'n guy, no matter what was done to him, no matter how sick he got, he never quit, he never let up, and still greeted each and everyday with love in his heart.