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Mom's Story

blackbird939
Posts: 1
Joined: Dec 2019

 Hello MM Forum,

I'm sad to report that my mom died yesterday due to compl. of  MM. Why am I here? I wanted to share her story, for whatever that is worth to anyone. Also, I was hoping that someone here might comment on the specific circumstances of her passing. We are a little confused about what was happening in these final months. Here is her journey with this disease:

Summer 2015: she was 65, was doing something like changing sheets on a bed in her home when she broke a vertebra in her back. Of course, she didn't know it, because who would think that their bones had become brittle in the background without warning. She started taking some mild OTC pain meds, and thought it might be just a slipped disk. Her ortho doctor did NOT see what had happened, prescribed mild painkillers.

A month later, we were on a family vacation when her back pain really spiraled out of control. It became emergent. When we got home, she was in such pain, we checked her in to the ED. She slipped into a deep sleep on opiods, but not a coma when in observation. Then, within 24 hours, someone finally did the right test, and she was moved to the dreaded 3rd floor, Oncology. We heard the term Multiple Myeloma for the first time. She had hypercalcemia, this why she was in a haze/sleep in observation.

Started first-line treatments. I cannot remember exactly which drugs she took in which order, but rest assured that they are the standard treatments at that time. She was very ill, bed ridden while her body took the first real abuse from Chemo. They also performed radiotherapy on her back. Her bone scan mentions "innumerable lytic lesions" all throughout her skeleton, a lot in the skull for some reason. Perhaps the skull is just easier to see the lesions.

2016-2017: treatments continue with some changes, maybe 3rd or 4th line treatments. Health relatively steady, weakened by the chemo, but hanging in there and can still travel, live self-reliant as before diagnosis. Discussions about bone-marrow transplant begin.

Summer 2017: bone marrow transplant. This was an epic blow to her body and morale. This was like a miniature death for her. During one of her scans, they thought they detected PML, very rare and deadly. Still have no answer as to what that milky-white haze in her ct scans of the brain were. It appeared like PML to more than one radiologist. No answer.

She lost her hair, but made a decent recovery, clinically. Emotionally, she openly doubted if it would be worth doing again, given the option. It was pretty brutal to watch.

2018: several other lines of treatment. All the same names you all know. Holding together as well as could be expected.

Early 2019: Went with mom to a seminar on CAR-T cell treatment. It was fascinating, and gave her a new hope. But the study/program is limited in scope, competitive and not offered locally(yet). Still, tentative plans were made to do it if she qualified. 

June 2019: She started to show a bump on her forehead. She was generally weaker and weakening from the last few rounds of treatment. Then, the bump on her forehead grew twice in size in a week or so. Her oncologist set her up for more radiotherapy, which she dreaded because it meant that her hair would fall out. She stalled a bit, but eventually went in. It worked, but it made her very sick. Then.... another bump showed up on the back of her head. She had that one done too. Her morale started to dip quite a bit, and her overall health took a troubling turn.

September 2019: The radiotherapy, or maybe a combination had a dramatic - very dramatic effect on her health. She was barely able to walk, a little foggy, extremely tired, and depressed beyond belief.

October 2019: She was now in a doctor’s office, or an infusion center at least 4/7 days a week now. During one scan, her radiologist told her to get to the ED immediately, a lemon-sized tumor was in her femur and could break at any moment with just walking.  She did. It would be the last time she was ever able to live alone.

October 29 2019. She was checked into a hospital locally. Looking at their options, the tumor could A: be pinned/rodded through the tumor, or B: radiate the tumor, shrink it and THEN place the rod. The team evidently decided that her recovery and PT options were such that drilling through the tumor was the best option in her case. They did do this surgery and it went quite well. She was such a trooper, she never really complained about the pain in that part of her body. It actually healed (on the surface) quite well. Important: she seemed to lose all appetite in the hospital starting here. She would ask for us to bring her favorite foods, but only have a bite. We estimate about 300 calories a day. Her bloodwork was such that hospital/physicans were not concerned about her lack of appetite.

November 15 2019: She was discharged and sent to in-patient rehab. She was visibly shrinking from loss of appetite and no nutrition. Even her favorite foods were rejected. A new large, troubling growth in her mouth appeared. I had never heard, seen or read about anything like this in my research on MM. An ENT came by to do a biopsy. I still don't have the results of what this was. Toward the end, it was the size of a fortune cookie protruding from her lower gum- inward toward her airway. Her main Oncologists at the Moffit Center in Tampa were familiar with it and said to 'watch out, it could double in size in 24 hours without warning, blocking her airway" It never did. Again, she stayed nearly 2 weeks here in this state-of-the-art rehab facility, eating about 200-300 calories a day, only on fluids when she showed signs of dehydration.

November 27th 2019: She was discharged - to our collective horror- because she was in absolutely no state to be discharged in our opinion. She was so weak, she could not sit up, would not eat, and her cognition had declined rapidly over the last 4 weeks to a point where she was slurring speech at times, just not herself. But her 'numbers' (not MM, regular panel numbers) were within target, so they had to discharge her. We took her home and my sister (51) decided to stay with her for 2 weeks at home. Home PT was setup, but no wheelchair or walker was sent as she had one at home. We ended up just buying her a wheelchair because her strength weakened daily such that we could only lift her up, place her in a wheelchair, and wheel her from couch-to-bed and back. Her appetite never recovered, and we fought with here hour by hour to eat anything. Drink anything. Zero interest. She might choke down an ensure if we stood over her and demanded it. If you are reading this and are at this point - DON'T fight your loved one to eat, you'll regret spending quality time arguing.

December 9: Her overall health dropped so low, we voluntarily checked her back into Oncology at the local hospital (where her original diagnosis was made). Our hope was that a PEG/feeding solution would be put in place as maybe she was suffering from some kind of Anorexia - and just needed help to get her strength back. The next day, the Oncology hospitalist told me that a feeding tube was futile, and would be cruel. That her body was so busy fighting the tumors all over her body, it could not divert any more energy to digestion. He mentioned: Hospice for the first time. Her calcium spiked up to 15. They used the calcium countermeasures to bring it down.  On December 12th, she was awake for the last time. The treatment worked, but with limited result. She was awake, but disoriented. I quickly called other loved ones so they could say something over the speaker to her. 20-30 minutes later, the pain in her back was excruciating. They put her on a benzo (Ativan?) and 5mg Morphine. It wasn't enough, so they bumped it up over the next few hours to bring it under control. It was at this time, when she was awake, that I was in a meeting with the Hospice group. So, they discharged her that evening to Hospice. She was really never 100% with it, but could understand that she was being moved - it was my intent that she never heard the word Hospice. I just told her she was being moved to a rehab. 

December 12-20. In hospice, there are no fluids, no calcium treatments, just Ativan and Morphine 5mg. She never woke again. Slowly, over this week, she slipped into what I can describe as a very, very deep sleep or coma. She started getting congestion in her lungs, they added Benadryl - which worked quite well. The rattling stopped, but you could still hear it deep down. One of these days, her eyes became half-open, and could not be closed. Then, her breathing changed, then a mild fever. When her feet got cold, we knew it was the end. Her breathing became more and more shallow... then yesterday, at 2:30 PM, she took a breath, then nothing for 30 seconds. then one more... then .............. nothing.

If anyone read this far, what I want to know is: were the various hospitals correct when they showed no concern over her lack of appetite for nearly 2 months? Was she actively dying all along, and it was act-after-act of futility to try to get her to eat/drink?

Also, the CAR-T cell treatment. At some point, when it was clearly too late for her, her Oncologist said her MM numbers were too good to be considered for the study. Something to the effect that the cancer had moved/mutated/changed in such a way that she now had these large tumors in her bones, but not diffuse in her blood, so- on paper- she would not qualify. I had very serious doubts that she had the strength at any point this year to survive the study. But I'll never know.

Hope this post helps someone. My mom was a wonderful human being. At 70, she was in perfect shape- outside of this disease. She had many more years ahead of her, but the cancer had other plans.

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