MDS: Beginning to End

[Carolyn's Husband Steve]

I am writing this story in hopes it might give some insight to people or loved ones of people with MDS-RAEB-2 cancer.

My 67 year old wife was in excellent health. Her primary doctor retired and she signed on with a new primary who wanted to update her information. A blood test from the new doctor showed numbers so different from her year old blood test that we thought the lab mixed up the names on the report. A second test was done and it came back with the same results as the first. My wife was referred to an oncologist, who after performing a bone marrow biopsy confirmed my wife had MDS-RAEB-2. She felt fine and had no noticeable signs of the disease. Blood and platelet infusions were given to get her numbers up. She could go two weeks between infusions. We were referred to another doctor at UCLA. This doctor became the primary oncologist in charge of her case. My wife was treated with chemo and the blood and platelet infusions. It was determined she was a good candidate for a bone marrow transplant so her 5 brothers were tested and four were found to be good donor matches.

The doctors chose one of the four to be a donor and the process began to extract actual bone marrow from this brother. Apparently there are two possible methods of extracting the donor material and the choice was up to the donor. One method required 200 biopsy draws from the hip bone. This was actual bone marrow tissue and the preferred method by our doctor. The other was removing stem cells from the donor’s blood. The donor chose the 200 biopsy draws. 4 ½ months after the initial diagnosis and chemo treatments and platelet/blood infusions, the bone marrow extraction from the donor and transplant into my wife began. My wife spent a little over a month in the hospital waiting for signs for increasing ANC blood counts. She was then transferred to Tiverton House, a hotel that UCLA uses as a “recovery center” It is withing walking distance of the hospital. After 30 days in Tiverton, we were sent home with no significant increase in her ANC. By now her time between infusions was only a few days. Suddenly our doctor transferred to another hospital and we were assigned a new doctor. Tests seemed to indicate the percentage of the donor cells was growing but the blood numbers still did not increase. The donor brother was brought back and stem cells were extracted to be used on my wife as a booster. A month later is was determined that the first transplant and the booster had failed. The process began to choose one of the remaining brothers to be a second donor. My wife continued with blood and platelet infusions. Her numbers for platelets were single digits and blood was in the neighborhood of 7.5.

At four months past the transplant, a bone marrow biopsy showed no donor cells remaining and cancer at 2%. Unfortunately, the insurance would not authorize a second transplant until she was 6 months out from the first. In those two months of waiting, her cancer grew from 2% to 9%.

At 6 months from the first transplant, with the authorization in hand and cancer at 9%, chemo sessions were started again to knock down the cancer to 5% or less. Two sessions were done. Each session consists of 5 consecutive days of Vidaza, then 3 weeks off, then 5 more days of Vidaza. Another biopsy was performed and her cancer percentage was at 6%.

By this time her she had developed red spots on her entire body due to low platelets. She would get a bag and two days later her platelet count was 1. The doctor wanted to get her percentage as low as possible and less than 5%. By this time my wife was getting weak and it was difficult to walk Purple spots developed on her hands and feel. She was hospitalized several times due to a rise in temperature after a blood infusion. Many tests were run and the hospital stays lasted on average of a week or two. Her last time in the hospital she developed small amounts of blood in her eyes and was examined by an optometrist who said that may go away on its own. If the purple hands and feet didn’t do it for me, the blood in the eye should have. I knew I was going to lose her but I didn’t know when. She was sent home with all chemo treatment stopped because she was so weak. We were now doing daily trips to UCLA for blood and platelets since the platelet count would return to 1 in less than 24 hours. My wife’s spirits remained high and she could walk unassisted, but I think that was due to will power on her part. I was constantly by her side, holding her hand, helping her shower and assisting with dressing. We were now at 18 months past initial diagnosis.

My wife had a very sharp mind. Little signs started to emerge which I should have known meant there was minor bleeding in the brain. She had trouble with the grocery list. She was forgetting things. The medicine she had taken a year earlier that involved using a syringe plunger into her mouth became difficult for her. She was pulling on the plunger instead of pushing. Everyone has a tendency to speak only positive thoughts to a loved one. You don’t want them to lose hope. But you reach a point where “that conversation” must be done. On a Friday night I told her I thought I might lose her and we needed to discuss some financial matters. Instead of crying, she said “I won’t die over the weekend”. I should have known her mind had reached a point where she was incapable of doing any serious thinking. Her daily conversations seemed normal. Sunday night in bed she took my hand and thanked me for everything. I woke up early Monday morning to do some work and she was still sleeping. When I returned to the bedroom to help her get ready for our daily trip to UCLA, I found her still in bed, unresponsive and breathing very shallow. She was laying in a pool of bowels and pee. She was rushed to the local hospital only 2 miles away. A brain scan showed one half of her brain already dead and the other half dying. She was on life support and would never regain consciousness. The family said their goodbyes and she died ten minutes after being removed from life support.

I would have given anything to know she only had a few days left. I would have said so many other things. I am convinced she could feel the blood seeping into her brain and the partial loss of her thought process. She was strong until the end and still had enough thought process to protect me from as much heartbreak as possible...and thank me for everything.

I cannot stress enough how important is is to recognize these signs and say what you need to say before its too late.

[JordanN]

Dear Steve,

I just wanted to thank you for sharing your and your wife's story and to offer you my sincerest condolences for the loss of your wife. Your love for her shows so strongly in your words and actions, and I am sure that she knew in her heart all the things you wanted to say to her. I am sure she is looking over you now and loving you still.

I know there are no words to make your loss better but know that there are a lot of people here who understand what you are going through and that you are not alone.

Sincerely,
Jordan

[Sally C]

Dear Steve,
I want to thank you for sharing your dear wife's story. Rest assured she knew everything you wished you had told her by your loving actions.
I wish you God's Peace and Comfort at this very sad time.
God Bless,
Sally

[Cheryl C]

Thank you so much Steve for being brave enough to share your story. My heart goes out to you and I send you my sympathy and prayers.

I especially appreciate your insights because, while from time to time we lose good friends from this forum, we don't often hear the details of their last days and your advice from experience is so valuable.

May God comfort you as you grieve this huge loss. It's obvious how much you loved and cared for your wife.