Both ClarkKent_DC and Commander Benson encouraged me to share this story, even though it doesn’t have a happy ending.
On Thanksgiving Day in 2017, Gayle had her first significant bone pain. We thought it was Sciatica. Gayle was toughing it out. She finally agreed to go to the hospital and get a steroid shot for it. Before giving a steroid shot, they check your kidney function. Her kidneys were in danger of shutting down because of the free-floating calcium in her bloodstream. Emergency was able to clear the floating calcium. Gayle’s kidneys survived.
The diagnosis was Multiple Myeloma, a cancer of the bone marrow. The word “multiple” means that it is everywhere. Radiation can’t kill it. Healthy bone marrow lessens, which decreases new blood cells. Also, when we are healthy, calcium from our food is combined with calcium our bodies remove from our bones. It is then put back into our bones to strengthen them. With Multiple Myeloma, the calcium fails to be absorbed by the bones and floats in the bloodstream. The bones become pitted and weakened because the calcium isn’t reabsorbed. Gayle was hospitalized for the first time in her life. She began chemo before she left the hospital. She came home and was using a walker (aka a frame). In early 2018, while using the walker in our home, she fell and broke her leg because of the weakened bones caused by the non-absorption of calcium.
The goal then, after her leg healed, was for the chemo to continue to lower the cancer cells to the point that her own stem cells could repopulate her bone marrow. This was supposed to happen in May of 2018 at the City of Hope. This was delayed first by an eyelid infection (Periorbital Cellulitis), probably caused by her suppressed immune system.
Fortunately, her badly swollen eyelid made us rush to the hospital. The infection had turned into blood poisoning (Sepsis) which is life threatening. During treatment for this, Gayle’s blood pressure, heart rate and breathing were very erratic. (I was sitting next to her, watching the readings on the machines. I now realize that if we had waited for an ambulance instead of rushing there in our car she might have died then.)
The Sepsis was overcome quickly. Her eyes were not damaged, but as Gayle’s eyelid healed her lower legs slowly became rubbery. She couldn’t stand. This was Guillain-Barre Syndrome, which the infection had triggered. GBS is caused by the patient’s immune system attacking the insulation of the nerves in extremities. Her brain couldn’t send instructions to her lower legs. The stem cell process had to wait until this condition was overcome. Using the Plasma Pheresis process, Gayle’s blood plasma was replaced. This had to be done five times in a single week to get rid of the attacking antibodies that had migrated throughout her body. This got rid of the unwanted antibodies that were causing the GBS. Following this procedure, the nerve insulation healed and Gayle was gradually able to walk again.
The harvesting of Gayle’s stem cells and their reimplantation happened in May 2019, a full year late, at the City of Hope. Harvesting the required million-plus stem cells took over a week. The cells were frozen. When they had enough and the PET scan showed that the cancer cells were mostly gone, the stem cells were carefully and rapidly thawed and implanted. The stem cells mimicked the surviving bone marrow cells. When blood tests showed that her bone marrow was rebuilding blood cells, Gayle had apparently recovered.
Medicare and our retirement association’s insurance caused us to have virtually no out-of-pocket expense for the excellent care at Kaiser Permanente Hospital and the City of Hope. We and the doctors were very happy that Gayle had been restored to a normal life, though she still needed a walker. It had been a long road and Gayle had been strong and optimistic throughout. By simply holding the banister, she was able to go up and down our stairs. Prior to this we were both sleeping downstairs.
We had started going out to see people within a day’s drive and Gayle was restarting her ceramics and jewelry-making classes. The COVID-19 pandemic caused us to stay home beginning in March 2020. In early October of that year, Gayle was unlucky enough to be one of the few having this procedure to experience a relapse of the Multiple Myeloma, detected when her blood test showed a decline in red cells.
Unlike the first bout with Multiple Myeloma, the relapse was much more aggressive. Her bone marrow was completely wiped out very quickly. The stem cell transplant was not possible because these cells need to be surrounded by a cell-type to copy. We had already faced the fact that this was a death sentence. When her oncologist told us officially, she took it harder than we did. After having a number of blood and platelet transfusions it was determined that nothing could save Gayle. She was sent home to me on October 29, 2020, so she could end her life at home with hospice visits. We were grateful that we would be together until the end. The end came on December 8, 2020.
Bone marrow cancer, like many other cancers, is very sneaky. Other than her blood count slowly dropping and her bone pain there was no warning. Until the last six or seven days, she was her usual self, and brave. Friends and relatives would visit her in the hospital bed we had at home. The lessening of her red blood cells was slowly depriving her organs and her brain of oxygen. I awoke on the last morning and she was gone.
Gayle at her pottery wheel.
RICHARD WILLIS 1-626-533-8642 RJWILLISCALIF@HOTMAIL.COM
Replies
Thank you for sharing, Richard. I learned a lot from reading this, and the sharing of your experience is a great benefit.
Thanks for sharing, Richard. I remember I first really got to know you after you announced that Gayle had passed.
Thanks for sharing.
You needed to tell us Gayle's story, Richard. It commemorates her; it keeps her alive in your heart; and it shares with us hers and your struggle, so that we may take some of the burden from you. I particularly appreciate the photo of her that you included. It tells us more about Gayle than a dozen paragraphs could.
Multiple myeloma is trecherous, both in its overwhelming impact on the body, and in the fact that it's one of the rarest forms of cancer. Long before my own cancer, when I'd discuss my medical history with my doctors, and they would ask if there was any history of cancer in my family, I would tell them of my mother's multiple myeloma. The doctors' responses were all pretty much the same: multiple myeloma is the cancer version of being struck by lightning---it's so random and unpredictable that it doesn't figure into the usual cancer-hsitory profiles.
They knew less about multiple myeloma when my mother contracted it. Her doctors studied her symptoms for a year and a half before they finally pinpointed the actual disease. Ten days after her diagnosis, she was gone.
Your love for Gayle is evident in your account. It's in the retelling---the reliving---of the events. And your account brings her to life for us, too, if only for a few moments. That's what most composes a human being we love---her presence, not the simple mechanics of bone and blood. You shared her presence with us, and we got to know her, too, if sadly, indirectly and for too short a time.
Thanks to everyone who has responded and who will respond to this thread. Gayle has been gone for five years, but she will always be with me.
I am sorry to learn that Commander Benson’s mother died from Multiple Myeloma. The son-in-law of one of Gayle’s childhood friends also died after a much longer bout with it. It’s considered to be rare. It’s only rare if it’s not in your family.
When the free-floating calcium was found in Gayle’s blood, confirmation involved drilling into a large bone for a sample of her actual bone marrow. Similar to this, the diagnosis of Guillain-Barre Syndrome (an auto-immune disease, not a cancer) involved a doctor suspecting it and ordering a spinal tap.
The ideal in stem cell therapy is to use the person’s own stem cells for a perfect match. Failing this, stem cells from another person can be used. Both the harvesting of her stem cells and the later removal of her own plasma was done In a similar way to how blood cells are separated by type (red cells, white cells, etc) from blood. The stem cells are in our blood, but their “headquarters” is inside our bones. When they were having difficulty getting enough from her blood, another (magic) process was added. They used an injection of something that “evicts” stem cells from the bones. It only lasts twelve hours, because these extra stem cells REALLY want to return to the bones. For three days, we had to go to the City of Hope every twelve hours, but they got enough stem cells from her blood after this. Fortunately, we live only ten miles from their main location. People who live a greater distance are able to stay at City of Hope’s living quarters.