The Final Days

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• March 26, 2019 at 8:57 am #46373
  Rose Palazzolo

  Participant

  When I first came to this forum I was searching for information on what happens in the end. I could not find anything. My husband Jack passed on Thursday, March 21st and I thought I’d let you know how he went. I know other may go differently, but this may help others.
  Jack was diagnosed on June 13, 2018 that he had MDs and it was the very aggressive stage. We were told six months to a year. We tried the vidaza shots. He did two rounds which made him very weak, hardly eating and he lost 50 pounds in those two months. We went to doctors for third round and she looked at him and said she was stopping the treatment that it was not working. We packed up and flew home to Florida. We signed up with another hematologist and he went for weekly blood work. In September he needed transfusions. He seemed to have more energy, walked slowly but eventually went to a walker. As each month went by his blood counts kept getting lower and transfusions were needed more frequently. Then it became blood and platelets. As another month passed blood work was done and counts still were low even after transfusions. On February 18th Jack needed more blood and platelet transfusions even though he had 2 unit of each the week before. He decided on that day to end all treatment and we called hospice.
  Jack was still getting around with his walker. Sit in his chair or sleep in bed. He ate three meals a day, small ones but still ate. He seemed to be doing well. On March 14th Jack stayed in his bed and slept most of day. We started having our dinner in the bedroom and we would watch TV at night in bed together. He still used his walker to get to the bathroom. As each day passed he was sleeping more and more. He had leg pain from the very start and continued till the end. Now his feet were so swollen I thought they would explode.
  On Monday, March 18th I called his hospice nurse and said she needs to see him. He was having so much trouble breathing even on oxygen 24/7. She came by and told him he is to stay in bed. Walking to the bathroom was exhausting him. She ordered a bedside commode. She told him what is going to happen is you will begin to sleep more and more and be awake less and less. Eventually you will go to sleep and not wake up.
  On Tuesday, March 19th he slept most of the day. He had a little breakfast and had a bowl of soup for dinner. We sat in the bed together and watched TV that evening and he ate some ice cream. Wednesday, March 20th he woke but seemed and little confused and incoherent. He used the commode and went back to bed. I brought his juice and he had a little of it. He drank a little water during the day when I asked him to. His breathing was more labored and I kept telling him to breath through his nose to get the oxygen. By 4pm I called hospice. They told me to give him an oxycodine pill and I also was told to give him some morphine. When the nurse came she repositioned him on the bed and we waited. She said he is doing better and breathing is better. She left. I was to give him the morphine and another pill every two hours. I kept checking on him and at times he was babbling. I held him and asked him if he was going to leave me tonight and he just grabbed my hands. I told him it was ok to leave and that aI loved him so very much. I told him to go that his Dad and Mom were waiting for him. He just grabbed my hands again I held him and rocked him. His entire body was ice cold. He was not shivering, but I knew the end was very near. I gave him the morphine and by 11:30pm he was having so much difficulty breathing I called hospice again. A male nurse came and he repositioned Jack to his side. Put some pads under the side of his face. By now Jack was still breathing heavily and you could hear gurgling. The nurse said if he is on his side he may be able to drain out some of the mucus since he cant cough it up. Jack seemed to calm down a bit. We went into the kitchen to talk. A few minutes passed and I went back to check on Jack and I saw blood coming out of his mouth. I called the nurse and then I saw Jack smile and stop breathing. The nurse checked his heart and removed his oxygen and said I’m sorry, he’s gone. Of course I lost it then, but know that he is not suffering anymore.
  I’ve been keeping myself busy with so much to do and I know it will all come crashing down on me one day.
  When I was cleaning out a jewelry box of his Dad’s I found this locket. I opened it and inside was a picture of Jack about 10 years old and his Dad in the other picture. I totally lost it and told him “I knew your Dad was waiting for you.”
  I know each person will experience this terrible, painful disease differently but I hope this helps some a little bit.
  Rose

  March 26, 2019 at 10:19 am #46374
  Allan Romriell

  Participant

  Rose,
  Thank you for that, I know it must have been hard. It was hard for me to read it as I know one day my wife will be in your shoes and I can’t do anything to stop it from happening. I hope you have loved ones to help you through this difficult time. I will keep you and yours in my thoughts and prayers. Thank you again for posting your experience. Words don’t really seem like enough somehow……

  Allan

  March 26, 2019 at 10:28 am #46375
  Nancee Noble

  Participant

  I too, have had leg pain. Everyone keeps telling me it has nothing to do with my MDS, high risk. Reading that I am not alone in this was very halpfull. Thank you for putting your own pain aside to help the rest of us.

  March 26, 2019 at 12:15 pm #46376
  Donna Clabaugh

  Participant

  Blessings to you. I lost my husband 5 years ago to another illness and my son to cancer 15 years ago. We used hospice in both cases and they are great. Now I have been diagnosed with both MDS & MF. I have two daughters and they both know my final wishes when that time comes.
  I will share this with you. I hope it helps.
  As I sat by my husbands bed in his final hours, I was in prayer as he slept. I suddenly felt a hand move into my midsection as I heard the Father whisper to my heart “I am taking that part of you that is him”. I suddenly, after 53 years of marriage, understood like never before that “Two shall become one”
  I can’t explain to you how or why but from that moment I had peace. My husband was a believer and I know I will see him again.
  I hope you find God’s peace as you grieve. God Bless You.

  March 26, 2019 at 5:35 pm #46378
  help4eachother

  Participant

  My Mom is 89 yrs old & was diagnosed with MDS nearly a year ago. She refused to have a bone marrow biopsy due to her age and was not a candidate for treatment with the exception of transfusions due to age & other comorbidities. Her peripheral blood counts include anemia, neutropenia & thrombocytopenia plus blasts showing up in pathology report. She had a blood transfusion which was ineffective and is now Palliative. She is in pain, especially legs & arms and has shortness of breath & chest pain especially with exertion. I am so distressed at watching her go through this and am wondering about prognosis at this point. She is old, has poor mobility & her life has zero quality. Interestingly, she had tongue cancer a year and a half ago despite being a lifelong non smoker, non drinker. Surgery removed the cancer on her tongue. Lymph nodes were removed but were clear. My understanding is that her tongue cancer is unrelated to MDS. Can anyone educate me on prognosis?

  March 26, 2019 at 6:54 pm #46380
  help4eachother

  Participant

  My heart goes out to those of you who have lost a loved one to this disease. Thank you for sharing your stories. Such a terrible disease with little known about it. Thank heavens there is research going on to solve the mysteries.
  I shared my mother’s story as I suspect she may be reaching the end of her journey. No swelling is present but she spends most of her time in bed. I will learn from all of you who have gone through this with a loved one.

  March 30, 2019 at 11:34 pm #46388
  Gail Sumerfelt

  Participant

  My husband had a stem cell transplant for his MDS on October 3rd, 2017. Our story is a long one,but I will keep it short. The transplant was unsuccessful and so were the booster-cells last July. We were so hopeful with his brother being a 100 % match.
  He gets weekly blood, platelets and growth factor shots. His counts are hemoglobin generally below 7, his platelets have been as low as 1000, his anc .50. His white blood count jumps around from 2.5 to normal at 5.0. He does sleep on and off most days and has no energy. He has chosen to continue this supportive care until it no longer works.
  I have asked what to expect and no one seems to known exactly. I pray for his sake that when his time comes that he just goes to sleep peacefully. He has suffered enough.

  March 31, 2019 at 9:17 am #46389
  Rose Palazzolo

  Participant

  Gail,
  That was the most frustrating thing is that no one would say how it ends! Maybe everyone is different. My husband couldn’t have a transplant because of other health factors. I prayed he went peacefully in his sleep. My husband had the same treatments your husband is having. Once it became a weekly event of his counts low and needed more transfusions and counts never rising he decided to stop all treatment. There was no quality of life, I was already alone since he was sleeping more and more with each day. The last month my husband was on oxygen 100% of the time. Because he stopped all treatment he had less oxygen in his blood making it more difficult to breathe. His feet were very swollen with edema but he still tried to walk to bathroom with walker. I knew it was his final day. His breathing was more difficult and I was giving him more pain meds to relax him so he would calm down and sleep. I held him and felt how ice cold he was and knew it was his time. His hands were usually cold but now his entire body was. I just prayed for his peace, he had been through enough. In the end he smiled and was gone. You and your husband will know when it is time to end the treatment. It was almost a relief. He survived a month after he stopped treatment. He was still Fighting every day. Again everyone is different but I hope you find this helps a bit.
  Rose

  March 31, 2019 at 9:34 am #46390
  Gail Sumerfelt

  Participant

  Rose: I totally understand how you were feeling alone even when he was still alive. Some days are better than others, but he really has little quality of life. He is still able to go have coffee with friends, but nothing else. He was going to our cancer center three to four times per week, but now it’s down to twice a week.
  Thank you for your information. I truly appreciate it.

  April 1, 2019 at 6:46 pm #46395
  christina neumann

  Participant

  thank you, Rose, for that. It was a very brave thing to write. I’m glad you did write as it does help those of us who probably will face this in the future. We do not deal with death in this culture much and yet, we all will go there. Thank You again, and kind thoughts to you in this difficult time.

  April 3, 2019 at 11:12 am #46403
  David Mitchell

  Participant

  Rose: Thank you for your story. I also have MDS and no one will give me the insite that you have provided. I have lived with it for a little over 2 years, and like most, face an uncertain future. We have tried several treatments, however nothing seems to work well enough to continue.I am going to Dana Farber on Friday and we will see what the next step is. You have brought me comfort as my wife and I move forward and I wish you the comfort in knowing that your husband, like myself, made this journey not alone but with the love and caring that only a spouse can provide. My prayers are with you.

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