The days and weeks that followed the doctor's belief of "three to eight weeks" left were, to put it mildly, a roller coaster.
I found it to be both a blessing and a curse. A blessing to be able to say all the things I wanted to say and more. A curse to know what was coming and to be powerless to prevent it.
On the Mother's Day weekend, we have a family weekend away. All 13 of us. I had been working on the planning it for a month and providentially it only suited everyone's schedule for that weekend. When I planned it, we did not know at the time that this would be a sort of good bye, the last time our whole family would be together.
During the weekend, we pretty much knew. We took walks, had chats, ate, and shopped. Mom had plenty of energy. We did not talk about her illness, but I took many, many photos. I regret that I did not take more. Three weeks later she died.
The following weekend, my Mom's younger sister, a dear friend who she had not seen for a while came for a weekend. My Mom again had abundant energy, attending church, going out for lunch and cherished talks with her sister.
The day my Aunt left was the beginning of the end. Mom had one evening of severe pain, the only bad pain she had in her last days. Her pain was managed with a quick trip to the ER for IV meds. She spent a couple days in the hospital to stabilize the pain and her blood numbers. She was the wellest person on the palliative care ward. Though she seemed weak and frail to us, she seemed in robust health, comparatively speaking, on a ward where few could manage to get to the bathroom on her own. None were walking laps around the ward to regain strength as she was. She seemed well enough by week's end to return home. She had high dose radiation for pain management on her back.
The great hope was that she would receive the unapproved drug. But timing is everything in cancer as in life. When she might have needed the drug most, and been well enough to tolerate, in early May, approval had not yet been obtained. Then the clinical trial was halted (as happens) while a bad outcome was investigated . Once it restarted the backlog of 'compassionate use' approvals was long and no possible way to jump the queue existed. We never received approval.
She came home from the hospital for the May long weekend and she slept a lot. Owing to the radiation, poor kidney function, disease progression and medications. But her pain was well managed with mild painkillers.
She had an appointment with her oncologist after the long weekend, and he gently told us the window might be closing for her to receive the new drug. Her kidneys were shutting down and he wasn't sure the drug would work when the myeloma seemed to have taken hold. He said someone else not so healthy and strong initially, might not have lived so long. He offered her a hospital stay to keep her as stable as possible in the hopes of receiving the drug, but we all knew if she was admitted then, she likely would not come home. Home was where she wanted to be.
We went home. Every day the weakness increased. She was a little confused at times and could not concentrate enough to read or even watch TV. But it was still Mom. She was a gracious and appreciative patient as Dad and I cared for her.
On Thursday, Mom rallied. She was still weak, but her mind was fairly clear. Her brother arrived from Winnipeg. My brothers and their wives came for a visit. My husband came by as did my Mom's very dear friend. Her younger sister called. We all had visits. We enjoyed smiles and laughs and hugs. It was a sweet, sweet day.
I went to bed with a happy heart, but knowing that this day, golden Thursday as I called it, was going to be the day that got us through the time that was left.
The next day she was weaker still and required someone to be with her constantly. She did not have any visitors but her older sister called and we had some health care personnel come to lend aid. She started experiencing shortness of breath, which was concerning. She had relief sitting or standing so most of the day was spent helping her sit or stand, then laying her down to rest, only to need to sit or stand again.
At night the shortness of breath increased and we considered calling 911. Instead I called a nurse and we were advised to give her a small amount of morphine, which is known to help with shortness of breath. Dad and I were enormously relieved when she fell asleep.
For hours I listened to her breathe. At 4 a.m. she was awake briefly, and we knew then that she was not herself. In the hours that followed Dad and I lamented that this would be how her last days or weeks would be spent. We had been told to expect her to lapse into a coma at some point due to kidney failure. It was not to be weeks or days. It was hours.
At 7 a.m. she died, likely of a pulmonary embolism, which had likely caused the shortness of breath and moved to a critical area in her lungs. It was a merciful, peaceful, but sudden death surrounded by her husband, her daughter and her brother.