My husband died a year ago this July 27th. He first got cancer in 2007, CNS lymphoma, a brain tumor . Then we had 7 more good years , until July of 2014 and another brain tumor formed. Then a year later, lymphoma was all in his body. He went through all the chemo treatments for that and was cancer free. But his doctor said he needed a Stem cell Transplant to prolong his remission. One of the biggest regrets of my life is that we did it and it killed him.
You can't second-guess yourself. I still hang out on the Acute Myeloid Leukemia page on FaceBook and Stem Cell transplants seem to be the only hope for something close to a cure. Unfortunately, the success rate is pretty low and the stories of graft-vs.-host disease are scary. You make the best choice you can amid a lot of uncertainty and try not to dwell in the land of "what if".
My husband died in February of this year from complications of a stem cell transplant for acute myeloid leukemia. He felt great after going through 2 rounds of consolidation chemo, but they recommended the SCT. I also regret the SCT, even though he probably wouldn't have survived the AML, but it would have given him more time. The SCT was pure torture and cruelty. And I think if he had survived the SCT, he would have lived in GVHD hell. (graft verses host disease). Leukemia is a no-win situation. The treatment is slightly less deadly than the disease itself. If you survive it, you most likely live with life-long complications from the treatment.
Hindsight is everything. If he had survived the transplant, you'd be saying you're glad you did it. Don't second guess yourself.
But after all is said and done, the love of your life is gone, and so is mine. I know exactly how you feel. I still choke up almost every day. The sadness is crushing.
I'm sorry for your sadness.
You know his doctor saved his life twice before , so we were use to doing what he said without really researching it you know? The doctor said it was absolutely necessary, so we did it. Emory had done around 5000 of these , so we thought they knew what they were doing. The doctors still don't know what went wrong. He got his own stem cells back on June 17th 2016 and he just went down hill from there. He got two different viruses and C-diff. He just kept getting high fevers and he wouldn't eat or drink. Finally his body just gave up. It hurts bad enough just having him dead, but how he died is almost more than I can stand. We had no idea what we were getting into. I know that he would have died from the cancer eventually but I think we would have had more time together and he would have seen his first grandchild. Lucas was born 2 months to the day Mike died.
My husband's blood pressure went up, his platelets were bottomed out. He complained of a bad headache. no one seemed real concerned. He became unresponsive. They took him to ICU. Came and told me he had a massive brain hemorrhage and that I needed to make the decision whether to remove him from life support. He would be a vegetable if he survived. I had mentally prepared myself that he might not survive the illness, but it never occurred to me that I would have to make the life support decision. Meanwhile I had to get all our stuff out of his regular hospital room and take it to the car. My head was spinning. I told them to pull the ventilator. They said he would quit breathing within a couple hours after removing the ventilator. It took 11 hours. Worst day of my life. And I've suffered PTSD from it. You and I are having the same thoughts and pain. You are right, how he died was the worst thing. He had a mouthful of sores, a sore rectum from diarrhea, no appetite, and I noticed he was twitching his last few days. There were STC success stories on the AML facebook page and I thought an SCT was our only chance.
My husband's name is Mike too.
My husband also went through the stem cell transplant....the transplant did not fight the cancer and the meds they had to give to keep the donor cells "in check" made him miserable. The cancer came back and we were told on his 63rd birthday. The rememberversiary is July 13. It will be three years since he left me here alone. I told him to go (it WAS his 5th different type of cancer), that eventually I'd be okay. I'm better than I was 3 years ago, but I've a long way to go yet. I feel your pain.
I'm so sorry. You know there are so many stories, different in the detail but so much the same. It is so hard in the moment to know the right thing.
Our surgeon went in six times to help my husband with all the complications of his colon cancer. Cancer free but radiation damage cursed us for seven years. Up and down, good times and bad but he always did right by us so we trusted him. When he didn't want to do the fistula surgery and recommended someone who was top in the field we didn't question. That "best surgeon" perforated him almost immediately after going in too high so he couldn't absorb nutrition anymore. I had a vibe about the guy but pushed it off even with his grand promises but now I am the one who lives with that choice and not speaking up. Then I had to decide about a heart valve transplant while he was intubated after pneumonia, again, it had to be, right? Then the up and down NEVER being told it was a hopeless case, too much liver damage to heal, believing like the past we would bounce back, a young guy (early 40's) ofcourse he would, only to have his lungs collapse and I was given the task of deciding to help him go or try some more. That was 2011 and I still question each and everyone of these choices that might have made a difference, that would not leave my daughter's without their dad. Suffering seems wrong so I had to go with that but maybe his fight wasn't over and maybe I should never have to be the one to decide if it was. So, the card registering his pig heart valve came a month after his death, what do you do with that? Throw it away? As spouses, the things we have to decide are sometimes things that no person should have to do. I hope you can accept and love yourself enough to believe you both did what you thought was best at the time.
Ladies, I'm sitting on my bed reading your stories and this is just unbelievable . I too had to decide to take Mike off the breathing machine. His kidney's started to fail. His blood pressure got lower and lower. I read an article that said more and more cancer patients are dying in ICU than ever, because we decide to do these drastic things to our bodies thinking it will save our lives. I wish Mike had been able to just enjoy his last months of life instead of going through that horrible SCT. I wish he could have come home to die instead of in that awful hospital. Reading your stories means a lot to me. I appreciate hearing about your wonderful husbands and how brave they were. They were all very brave, and they wanted to do anything to be alive for us and our children. I'm not afraid of death anymore like I use to be. My husband faced it with dignity and so can I . He never panicked , or cried, or complained. He smiled at those damn nurses and doctors everyday. He told me he loved me everyday, even though he barely had the strength to talk. God bless you all and thank you again for sharing your pain with me. Maybe together we lift each other up and help carry the burden.
Too true. I feel like I have to take something so hard and try to give some comfort to others in the knowledge of commonality in our pain, our sadness, and our devotion to those we have lost.
Paul's wish was to come home from the hospital and be home for Christmas... I lived with him in the hospital room so we were not apart... So we went home after the Drs. told us no more could be done. But he didn't make it to Christmas. But my family moved Christmas up! We celebrated everyday. People came everyday. So I hope he was able to at least see the Christmas Spirit around him. He wasn't able to talk etc. at this point.So I'm hoping he at least heard us.
Hospice came to our house and stayed until he passed, It lasted approximately a week. But he passed at age 62 on Pearl Harbor Day. ( I was 59 then )...
Surprising how many of us lost husbands to the same disease. I guess that, in a perverse way, Ron and I were lucky in that he wasn't a candidate for anything other than Vidaza, and one round of that did no good. He was 78 and his body was already weak and worn out from 10 years of a precursor disease called polycythemia. The only reasonable choice was palliative care. He lasted for 4 months after the diagnosis. I've read a few things from cancer survivors who still deal with multiple health issues from the aggressive treatments that saved their lives. There is no right answer- we just make the best decisions we can.
I now donate platelets every month- I realized after joining the FaceBook AML group how important they are. I've been blessed with excellent health (and I work at keeping it that way) and it's a way of sharing it with others.
I'm sorry to hear about your loss. Even though it's been a year, I KNOW it still hurts.
My husband died of Glioblastoma grade 4... Brain Cancer that was not suppose to spread. But it did. It went down through his spine... He was diagnosed in July of 2015 and passed on Dec. 7, 2016. He went through all of his treatments.. But during the BREAK from treatments is when he started to go down hill. But at least we had the time DURING treatments to do whatever we wanted. :-) But I digress.
I don't know much about Stem Cell Transplants. But I'm sorry it didn't work.
I had so much of what they call Anticipatory Grief, I wasn't TOTALLY shocked... But it has been lonely. I seem to feel lonely even in a crowded place.
Ladies, that's good idea about donating platelets. I'd have to go to a different hospital than Emory. Thinking of pulling up at Emory makes me want to vomit. The comment about being lonely even in a crowd. I feel that way too. Actually I feel like I don't fit in anywhere. I do ok with playing tennis with my friends , but going out to dinner or going over to someone's house, I feel really odd, different. It's very strange. I'm not very social and Mike was like the loudest person in the room LOL. I think I hid in his shadow a lot when we were out, so now I'm on my own and I can't seem to fit in.