My husband passed away 2 days ago

Jttalways Member Posts: 1 Member
edited November 2022 in Leukemia #1
My husband just passed away 2 days ago. I am numb, broken-hearted, and unable to sleep. I found my way to this forum searching for any semblance of comfort. I am hoping that writing this will be a therapeutic relief for me. My husband was diagnosed with the rare and aggressive mixed phenotype acute leukemia at 34yrs old on February 20, 2018. You think you can prepare yourself for the worst, but you can’t. I am a broken mess of devastation, anger, regret, and sorrow. His only hope was a bone marrow transplant. Everything was ready to go, had the donor and doctor, but due to many health obstacles, i.e waiting for a fistula to clear up, intestine biopsy & bronchoscopy (both tests results yielded nothing!), a breakout of shingles, prolonged and prevented my husband from getting the transplant. By the time he was finally cleared to proceed with transplant, he had fallen out of remission. First time, it was a month before transplant. 2nd time, 5 days before. Last time, we found out 1 DAY BEFORE transplant. My poor husband spent most of his diagnosed life in the hospital. Endless rounds of intravenous chemo, his body weakening with each round. Multiple bone marrow biopsy results showing positive for leukemic cells, resulting in another round of chemo being ordered. Several spontaneous trips to the ICU due to low blood pressure and infection. My husband developed a fistula sometime in the middle of his battle. This fistula flared up and raged every time my husband’s WBCs hit zero. He was in excruciating pain every time it was inflamed. The only brief relief from this pain was intravenous dilaudid, which was usually administered 1mg every 2 hours. After several trips to the ICU due to his blood pressure bottoming out, my husband realized the trigger. The trigger was that when he took dilaudid in pill form in between his IV doses, his blood pressure would plummet, code blue would be called, resulting in separate trips to the ICU. So, he swore he would not mix dilaudid pills and IV dilaudid together. Fast forward to this past Sunday. My husband just finished his 15th or 20th round of chemo. His WBCs are nonexistent. His fistula is alive and throbbing. He’s paging the nurse for pain medication. She walks in announcing “the doctor swapped your morphine pills for dilaudid pills.” He had been getting IV dilaudid with time release morphine pills in between. My husband “I don’t want to take dilaudid pills.” Nurse “No, it’s ok, it’s for your pain.” My husband “No.” I jump in since he’s in pain and it’s hard for him to speak, “He doesn’t want to take it because he believes that when he takes the pills and IV together, it causes his blood pressure to drop. This is why he went to the ICU the last 2 times.” She looks at us like we don’t know what we’re talking about and insists he takes the pill. He refuses and I ask her to send the doctor a message to remove the dilaudid pill and reinstate the morphine pill. The nurse says she’s noting in the computer that my husband is refusing the medication and she leaves the room. In an hour she returns and gives my husband his usual IV dilaudid dose. My husband’s pain is relieved and he falls asleep. A few hours later I leave to go home for the night. The next morning while I am at work my husband calls me in a panic. “My blood pressure dropped! They are moving me to the ICU!” I reply “What happened?! Did you take the dilaudid pills?” He cries “Yes!” I cry “Why?” He proceeds to tell me that his night nurse did not offer him any other alternative medication for his pain. So, due to my husband’s anguish, he took the dilaudid pills. He said he took a dilaudid pill at 5:30am, then received his IV dose at 8:30am. By 9am his blood pressure dropped and he had to be resuscitated. When he came to, thats when he called me. Since this has happened a few times before, I reassured my husband that he would be alright and that I loved him. I told him I would get off work and see him soon. Once I got to the hospital they were in the process of transporting him to ICU. As they wheeled him out of the room he was clearly distressed but still coherent and managed to get out a “hi love” to me as they wheeled him to the elevators. Never in a million years would I think that would be the last time I would hear my husband speak. While getting situated in ICU my husband stopped breathing and was revived with Narcan. Once revived he exclaimed to the nurses that he couldn’t breathe, so they intubated him. My husband’s body went into septic shock. My husband spent the last 30 hours of his life in sedated intubation while his organs shut down. I held his hand and spoke to him. I got several responses like eyes rolling towards me, hands moving, arms lifting. But I will never know for sure if my husband heard me tell him over and over that I loved him. While all his other organs shut down, his heart was the last one fighting until, rather abruptly, it finally gave out. My husband fought hard. During the last year and 7 months of his life, he dealt with the horrible effects of chemo, including seizures, arthritis, lost of vision in 1 eye, when flared up excruciating fistula pain, excruciating nerve pain from shingles, etc. I am angry, broken, and full of regret. The typical regret of “I should have spent more time with him,” even though I saw him every day. More specific “I should have stayed with him that night to make sure he didn’t take those damn pills” & “I should have pressed the issue and made sure the nurse relayed the message to the doctor about changing the dilaudid back to morphine.” But the 2 bigs ones “If my husband didn’t take those dilaudid pills, he would still be alive.” And “He never got the bone marrow transplant.” My husband spent 10 weeks out of the hospital this year. I am grateful for that time he got to be home with me and our son. My husband will never age for me. When and if I live to be old and gray, he will be forever young. I pray and hope that he knew how much my son and I loved him.


  • Brucecav
    Brucecav Member Posts: 5 Member
    edited March 2021 #2
    I just joined here see thie

    I just joined here see thie happened in 2019 I am so sorry for your loss I sometimes wonder why I am still alive while other die. God Bless

  • luzycll
    luzycll Member Posts: 4 Member

    My deepest sympathies, a huge loss for you after a long struggle. The hospital situations are very stressful, I am sure you did your best. He was very lucky to have you.

  • jerkyok
    jerkyok Member Posts: 4 Member

    Thank you so much for sharing your story with us all.

  • satenama
    satenama Member Posts: 8 *

    I just wanted you to know I was thinking of you and your husband. September 24th is my Leukemia anniversary (28 years this year, although similar to your description, the 3.5 years of chemo are frozen forever in my memory as just happening yesterday to my 19 year old self). It's a date heavy to me as I remember all the folks I've known along the way who died from their cancers, many of them a mercy, but most a tragedy. Thank you for sharing your husband's experience. I will not forget him. I wanted to send you and your son comfort tonight. --Paula, from Texas.