1947 / Class of '04 / Blood pathology, ONJ / Chemo, SCT / Died 11-18-2005
(By her son, Phil.)
My mother was born in a small town in Southern Missouri in July 1947. She was raised on a farm. At the age of 19 she married my father. My father was a traveling salesman and they moved to Colorado, where I was born in 1969. We also lived in Nashville, TN, but moved back to my dad's home town in Southern Illinois when I was 12 years old. This town is also a farm community. She was a dog groomer for 20 years. She had no allergies and had never been hospitalized. She had a little sinus trouble and that was about it. The only doctor she saw regularly was the gynecologist. My mom's sister has also had some form of leukemia.
Starting in 2003 she began complaining of being tired all the time, feeling run down. Being a dog groomer can be quite demanding so this was easily chalked up to her job. Around October 2004 she started having back trouble, pain in the middle of her back. She would occasionally get out of alignment and would visit the chiropractor, so again this was easily written off as another one of those times. My grandfather passed away November 23, 2004 and I had to come home to attend the funeral. The day of the funeral I noticed when my mother was getting dressed that she had a large dark blue/black bruise on her chest. She said this was the first time she saw it too and had no idea how she got it. Her back was now hurting so bad that the day after the funeral she had to lie down all day.
The following weekend they had plans to visit my brother and his family in Texas and my mom had a hard time getting around. They came back on Tuesday and on Wednesday my mom went back to work and groomed 3 dogs. I talked to her that day and she wasn't feeling very well and had made plans to go get some blood work done. On the way to the hospital she got sick and decided just to go home. By that evening her nose started to bleed so my father took her to the emergency room. She was two pints low of blood. They did a complete work-up including a bone marrow biopsy. The diagnosis was Multiple Myeloma with 90-95% malignancy of her bone marrow and a subsequent compression fracture in her back.
The doctor in town was familiar with Multiple Myeloma and immediately contacted Barnes Jewish hospital in St. Louis. On that Saturday she started her first round of DVD. She did three rounds of DVD in preparation for a stem cell transplant that would take place in St. Louis. She received 5 radiation treatments on her back which seemed to help the pain, but this was discontinued in fear in would interfere with the impending transplant.
She responded to the DVD quite well and underwent an autologous stem cell transplant in May 2005. This was very hard on her and she was in the hospital almost a month. She developed a virus in her intestinal tract and was generally very uncomfortable. For the stem cell transplant, most studies showed an average remission period of 2 years, so we were hoping for the best and trying to return to our normal lives the best we could. Mom was doing physical therapy at the local hospital and seemed to be able to do a little more each week. She started doing aquatic aerobics at the local community center with my father and things seemed to be going well. She was doing blood work about every two to three weeks and the cancer was in remission. She was taking Zometa and was having trouble with numbness and tinkling in her jaw. She was diagnosed with necrosis of the jaw and was immediately taken off Zometa.
The first week of October 2005 she began bruising again. She had given blood just two weeks prior and everything was fine. She went back to her oncologist in town for blood work. Her platelets had dropped to zero and she was two pints low in blood again. They did another bone marrow biopsy and sent it to St. Louis to be read. In the meantime she was having headaches that seemed to be getting worse. They performed a brain scan and determined she had some blood on her brain. On October 17th she was sent to the emergency room at Barnes Jewish Hospital in St. Louis for observation. They admitted her to the neurological ICU and observed her for a few days and determined the bleeding wasn't getting any worse and that it would dissipate with time. They sent her to the main neurological floor to regain enough strength so she could go home.
On the night of October 21st she fell in her room and hit the left side of her head on the floor. It took the hospital 19 hours to do a CT scan. Immediately after they read the scan and determined she had swelling on her brain, she was sent back to the ICU and they wanted to operate immediately but couldn't because of her low platelet and hemocrit count. They had to transfuse two bags of platelets and one pint of blood and then on the morning of October 23rd they operated to remove the blood clot. That night they operated on the same spot to remove a second blood clot. For the next week it was touch and go. She was having to receive platelets and red blood because of her cancer and she was having to deal with recovering from the fall. As soon as she was able to swallow they started her on Thalidomide and Dexamethasone. She was supposed to start Velcade prior to the fall but her oncologist decided that the Thalidomide may work faster determined by her immediate need.
Friday November 4th they moved her from the neurological ICU to the Siteman Cancer Center. They said that her head trauma was stable. The cancer center nurses made several mistakes with the FDA controlled drug, Thalidomide. Several times my dad had to question the administering of the drug. She was given 50 mg instead of the prescribed 200 mg several nights in a row and the Thalidomide was actually removed from her list of medications one night before my father caught it. She was alert off and on for periods of time over the next week but she was having to receive more and more platelets and red blood.
Starting the weekend of November 12th, her pain began to increase two-fold and they couldn't give her enough pain medication to keep her comfortable. On November 15th the doctor told my dad he didn't think there was anything else they could do for her there. My dad decided to bring her home. She arrived home by ambulance on Wednesday November 16th. Hospice made all the difference in being able to deal with her pain. The next day she showed signs of struggling to hang on and my dad called me to fly in from Florida and my brother from Texas. Friday evening November 18th she had several periods where she struggled to breathe. Saturday morning at 3:16 a.m. she took her last breath.
We can only assume that because of the extent of the cancer at first diagnosis that this contributed to her early death and poor response to the stem cell transplant. We have no idea how the fall in the hospital affected her ability to fight the cancer and if it would have made any difference in how long she lived. What we do know is that she will be greatly missed, for she was a fantastic woman, wife, mother, grandma and friend. This disease took the life of my mother. Both of my children loved her very much but won't know all the love she could have given them, all the love she gave me. With this I would like to place my mom in memoriam to be forever remembered.
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