[Rachlm927]

Hello, my mother passed on July 30th from MDS, and I felt it was important to post my story here. She was diagnosed 8 weeks earlier, and such little information on MDS stories on the internet. I visited this board several times per week, reading posts, searching for information, looking for similarities in cases, and it was very helpful. Hopefully I can return the favor to someone else in need of information.

My mother’s story really started 14 years ago, at age 45. Out of nowhere she has a stroke. After many tests, the conclusion was she had a rare cancer that her bone marrow produced too many platelets (ET – Essential Thrombocythemia). After a few years of getting this under control, she started to have issues with her stomach, so bad she wouldn’t leave the house. She was soon diagnosed with severe Crohn’s. Finally after 8 or so years of constant hospital visits, doctor’s appointments, a few surgeries….she seemed to be improving and was living a normal life for about 2 years, even going back to work full time.

She then started to have issues in her legs a few years ago, difficulty walking. After having to leave her job, and trying many different therapies, she had a below the knee amputation. A few weeks later she had a bad infection and had to go back to cut above the knee. She was never the same after that. Her depression was bad. She didn’t understand why so much bad happens to her. She was never able to walk using a prosthetic, and was confined to a wheel chair. Not easy for someone with Crohn’s disease. But, sadly the worst was yet to come…

On Mother’s Day this year, she ended up in hospital. No energy, delirious, no control of bowels/not aware….my father called 911. First they thought she had a heart attack because her hemoglobin was so low. Her Oncologist came in to yell at her, my mother hadn’t seen her in almost 4 years, and so she did a bone marrow biopsy. After a few transfusions her numbers returned to normal, and she was back home in 4 or so days.

A few weeks later we went back to Oncologist office, to review the results of the BMB, and were told she had MDS. It was a 3 – 4 minute conversation, didn’t seem so bad, we were told she would start chemo following week (Vidaza and Revlamid) and her best option would be a bone marrow transplant. “You are young, you can beat this” is what she told us…. It wasn’t until I got home and did some research that I learned how serious the disease is.

Well, my mom never started the chemo the following week. Instead she ended up in hospital again, needing a transfusion, but having a fever. Looking for infection. Every test possible, I know a lot of you have been through this game.

A week later, she was out and starting chemo. Few days into Vidaza, back in hospital again. Short stay after getting a few transfusions. Home a few days and finished Vidaza, next day back in hospital. This stay ended up being almost 3 weeks. Then discharged to a nursing home (we couldn’t physically take care of her) and back in hospital 4 days later with pneumonia.

I won’t bore you with the details: transfusion, fevers, can’t find infection, repeat. Long story short, her body was too weak to handle the treatment. She couldn’t fight infection after weeks of not being on chemo, how could she ever survive chemo? During this time, it was getting scary. She started seeing things, talking to people not there, not eating, not caring about her appearance to others, sometimes mean. It just wasn’t her at all. I even begged them to do a brain scan, I thought there had to be something wrong with her brain. Nothing showed on the scan, and now I know it was the dying process starting.

She was also in extreme pain (a lot of pain due to the Crohn’s; but the MDS didn’t help) and it was so hard for us to see her cry in pain. She just kept saying she wanted to go home.

After numerous talks with oncology, hospital doctors, and palliative care doctors, we decided to stop treatment and take her home with hospice support. When asked how long she had left, the doctor said 1 – 6 months, guessing she would be closer to the month. We had her home 2 days and the hospice nurse said we couldn’t manage her pain, and took her to hospice house. She passed 2 days later.

It’s not fair. She was too young (she turned 59 a few weeks ago).

Yes I am angry, and am going to grief counseling.

I can not say enough good things about the people of Hospice. They are most compassionate, loving, understanding people I ever met. They took such good care of my mother, and me the caretaker.

I know this post is long, trust me I could write 10 pages of details, conversations, notes.

Only advice I can give is to live life like any day could be your last. And treat others as if today may be their last day. I have so many regrets of things I never got to say to my mommy. It’s hard to even remember our last lucid conversation.

Because my mother didn’t go to her doctor for several years, by the time of the diagnosis it was too late for her. With all her other issues, her chance of survival was cut in half (as per the doctor). I am grateful for her last day, at the hospice house. We played her favorite music, told stories, laughed, cried. Most importantly holding her hand while she passed.

I hope she is at peace now, pain free, in a healthy, disease free body.