Has anyone lost a spouse to complications of a blood cancer?

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Permalink Reply by Dianne in Nevada on May 17, 2012 at 5:50pm

My husband had multiple myeloma (MM), a blood cancer that attacks the plasma cells in bone marrow. He was too ill at diagnosis to undergo a stem cell transplant, so we didn't experience that, but I know many MM patients who were able to gain many extra years after a transplant. Sadly, I know of many more who did not. I'm so very sorry for your loss, Phyllis.

All cancers suck … and the treatments are barbaric.  My husband suffered for over 4 years with his cancer. He had immediate surgery at diagnosis to repair the vertebral compression fracture and remove the plasmacytoma on his spine. Two days later he started to bleed out and was rushed to the OR where they gave him 4 units of the wrong blood. He died on the table but they were able to revive him. He spent 6 of the next 8 months in the hospital and long-term acute care facility. Those months were filled with chemo, pneumonia, c-diff, GI bleeds, a PE, stage 4 pressure ulcer, colostomy, dehydration, sepsis, regular blood transfusions, massive weight loss, grueling physical therapy to regain his ability to walk. Radiation, chemo, physical therapy, more infections, more transfusions and numerous hospital stays occupied the next year. He did get about a year of remission with no chemo, no hospital stays, and we thought we were one of the lucky ones.  And then the cancer was back in new places and he went back on weekly chemo, his kidneys failed, he started dialysis.  He even experienced an abdominal aortic pseudoaneurysm caused by a screw in the titanium cage they had used to stabilize his spine 3 years earlier.  He suffered greatly.

I guess what I’m saying is there aren’t any good answers here. We make the best decisions we can along the way. Why do treatments work for some and not for others?  Why do some experience horrible side effects and others don’t?  Why do some live and others don’t?  I wish I knew those answers.  We experienced good doctors and horrid doctors, fabulous nurses and those who should never have chosen that profession.  And I learned that if cancer happens to visit me personally in the future I will not choose to have treatment.

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Permalink Reply by Bear on May 18, 2012 at 3:27pm

Hi Phyllis-  I just saw you question about blood cancer.  my partne had MDS, myelodysplastic syndrome, something like leukemia.  She died about 12 weeks ago.  we went through alot of tests and treatments, but only a little chemotherapy.

she was not open to a bone marrow transplant.   She too , had alot of suffering which is the really hard part.

 

I am totally new here.  I include the intro FYI  Hi folks- I just joined last night. so glad to find a group that accepts same gender partner widows. I am  a woman, 58 years old living in the country of extreme Northern California.   my partner of 20 years  died Feb 20 from a long, horrible blood disorder that made her very ill for about 10 years. The last year was spent caring for her intensively.  She died at home with me at her side . Then ,  four days later my brother died, too.

I am still feeling very, very slow and emotionally exhausted most of the time .  I am moving my residence as I need to have much lower expenses, so I have been busy with that project.  But alot of the time as i sort household items, I end up just reminiscing and missing her, getting very little packed.  I feel almost paralyzed by overwhelmedness sometimes.

I made an appt to see a therapist that I used years ago next  Monday, to help me stay a little grounded. there is just too much change all at once.  I feel lonely, but also can only tolerate being around groups of people, even  my own family, for a little while.  there is a family birthday BBQ on Sunday that I will try to drop in on for a half hour, I think and then just slip away.

some of my pain is that we had alot of problems in the relationship before her illness and the meds made her quite hypersensitive which led to alot of mean comments on her part, so there was alot of wounding for me.  I did not retaliate and stayed by her through the whole process, but it was fairly abusive on her part some of the time.  most people seem to have had more pleasant relationships , or maybe are just not willing to be candid about someone who is gone. anyway, I am missing her terribly, but not the mean part of her . does this make any sense to anyone?  hope i have not violated a taboo.

I sat looking at photos of the better times earlier in the relationship last night , reminding myself of the good that we shared. and all that said, my heart is confused and breaking.  thanks for being there.

Bear



I am so very glad to have found WV and sharing with others who really GET IT is such a relief.

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Permalink Reply by Andrea S. on May 19, 2012 at 8:52pm

My husband had lymphoma and died shortly after his diagnosis. It's likely he died of spesis- but we are still waiting for the results.  ~Andrea

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Permalink Reply by saudade on March 16, 2013 at 5:29pm

My husband died from AML (type of leukemia). He had a transplant, but it did not work because they were unable to get him into full remission  beforehand. He developed the BK virus post transplant which attacked his bladder causing painful clotting. He only lived 9 months after diagnosis, most of it as an inpatient. ~Lisa

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Permalink Reply by sus on March 22, 2013 at 8:02pm

Alan had Hodgkin's Disease. Like your husband, it was the allogenic bone marrow transplant (graph vs. host disease) that took his life. He was sick for 3 years. It was the most brutal death I have ever seen :(

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Permalink Reply by Andrea S. on March 22, 2013 at 8:34pm

I'm sorry to hear that Sus! Your story gives me a little peace -knowing that my husband only suffered for 5 weeks with lymphoma- all in-patient (but in Italy) which made our whole story that much more complicated.

It is still rough - one year later.

~Andrea

 

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Permalink Reply by Phyllis on March 23, 2013 at 7:21am

Hi, Phyllis.  My name is Phyllis too, and I am so glad to see your post. 

My husband started getting sick on September 8, 2011, on his way home from work on his last day before retirement.  He was diagnosed a week later with leukemia, but they did not know at that time what kind it was.  The next day we got a phone call at 7am saying he had AML, the most aggressive type, and he needed treatment immediately.  We are lucky enough to live in St. Louis and have easy access to Barnes Siteman Center.  Don went through one round of chemo with no complications at all; the next biopsy showed  cancer cells still, so he had another round and never had a well day after that.  One infection after another.  He received a stem cell transplant on March 28 which engrafted 100% and showed him in remission.  But he could not fight the infections.  He had host versus graft and CMV.  The stem cell transplant, for something that only takes ten minutes and is almost a non-event, was a nightmare.  He was so sick, especially with mouth sores.  Then he started getting better and I brought him home.  His stays at home were shorter and shorter and his hospital stays were longer.  In July 2012 I brought him home on a Wednesday and had to take him back through the ER that Saturday due to 103 fever.  The next morning when I went into his room, his face was covered in blood and he had a big bandage on his head.  He had fallen in his room and they thought he was dead then for all the blood.  103 fever and no monitor on his bed, no one there to keep an eye on him.  I was livid.  That concussion led to no short term memory and a stay at a rehab facility.  I elected not to take him to Barnes rehab; I was sick of that place by then.  He was in another rehab for a week where he cried and said he wanted to die.  That was between asking the same question five times in 30 minutes.  I got him out of rehab on a Friday, took him to Barnes that day for a doctor visit and a treatment, got him home that night and had him back in Barnes the next day, Saturday.  He died the following Tuesday from a brain hemorrhage at his brain stem.  It could very well be that he would have had the hemorrhage anyway because the cat scan showed the original concussion bleeding to be in a different spot in his brain.  My sister-in-law is a nurse and looked at the cat scan and said she did not think the first bleed triggered the second bleed.  That was good enough for me not to take any legal action; I was too tired at that point, it would not have changed anything, and most important, Don was at peace.

Don died on August 14, 2012, eleven months and one day shy of a year of his diagnosis.  I'm putting my life back together and I think I'm doing pretty well.  I have four close friends who are widows and they have been wonderful.  I spend most of my time with my friends who were not our "couple" friends; it's easier for me. 

AML is a nasty disease.  And I will admit, thank God I didn't say this to Don when he hung up the phone, that I thought leukemia was a treatable disease, maybe some hospital stays and medication, but probably not a major lifestyle change.  That's how much I didn't know what we were in for.

Well, now I'm off to volunteer at a fund raiser for the Leukemia and Lymphoma Society.  Maybe in some small part, this will help so some other wife and family won't have to get an education in something they never thought they would have to learn.

 

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Permalink Reply by patarky on March 26, 2013 at 7:25pm

My wife had Multiple Myeloma.  She was lucky to be diagnosed early by a showing of unusually high protein in the urine.  We were told she had what was called "sleeping myeloma" which could go on for years without need for treatment.  So from 2001 to 2007 we monitored her blood work closely, and in September 2007 the oncologist said the "numbers" indicated the cancer had become active, and we needed to begin chemo.  She was in bad physical condition with other issues, severe arthritis and spinal stenosis which put her in a wheelchair, and she had atrial fibrillation controlled by meds.  We couldn't do a stem cell transplant, she was never able to harvest enough cells to do it, and due to her age (62) and other health issues, a "donor" transplant would have been risky.  We continued with various chemo treatments and clinical trials, some effective, some not, but always having to deal with the side effects.  She was always optimistic that she could weather this storm.  We fought it together - I am self-employed and could be with her through everything.  We spent more time together in the past 5 years than ever before in our marriage.  I never loved her more than seeing how strong she was, how kind she was to her nurses and Doctors, and never gave up the fight.  We always thought we would continue the fight for another 10 years, but the pneumonia and organ failure finally took her on October 29, 2012. She had been in the hospital this time since June 7, and we just knew that we were going to get her home and start the battle again, but it wasn't to be.  Life is hard now, harder than I ever imagined it would be. It's hard to believe I could miss the time we spent at the hospital so much, but I do.  I know in time I'll heal, but for now I am sorely tempted to answer honestly the people that always ask "how are you doing?" After 36 years of marriage, the pain takes more time to decrease than friends realize.  So many memories to sort through and deal with a future I really don't look forward to.  This site has helped in reading others stories, and realizing it does eventually get better.  Just hang in there and take it a day at a time.  Right now there are bad days and terrible days - I'm looking forward to a time when there will be a few good days in the mix.

Patrick

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