Multiple Myeloma – The Final Chapter

My Mum was diagnosed with Multiple Myeloma in September of 2017. Previously, I wrote about how after recovering from the shock of such a diagnosis – we ended up at the Mayo Clinic in Rochester, Minnesota and my Mum was placed on a modified treatment regimen of Revlimid and Dexamethasone. And she seemed to be doing really well – all her labs normalized, she was feeling stronger, she was able to do things she enjoyed – gardening, helping others, knitting and getting out and about.

And we all breathed a reserved sigh of relief.

Because she went into remission, her doses of Revlimid and Dexamethasone were decreased. Her lab values remained stable, within normal limits. And we were happy, and rather pleased with ourselves that she had managed to arise from this scary disease relatively unscathed.

But then, the insurance program decided to change the way in which she received her Revlimid. Instead of being sent the Revlimid from a local pharmacy who worked with her Oncologist, the Blue Cross insurance program offered through the University of Chicago Retiree program, decided to change the pharmacy to Accredo. I arranged for the shipments of Revilimid to be sent to my Mum.

And that is when everything went to hell. The shipment of Revlimid she received from Accredo – there was something wrong with it. My Mum experienced such horrible side effects from it – bright green grainy diarrhea, debilitating weakness that led to Rhabdomylisis – an illness where the body basically destroys the skeletal muscle. The myoglobulin (caused by the rapid destruction of the muscle tissue) coursing through the body wreaks havoc on the kidneys. She was hospitalized and given large amounts of IV fluids – in order to flush the toxins from her system. She recovered, but this was really the beginning of the end for her.

My Mum was convinced the Revlimid she received from Accredo was not the same as the Revlimid she had taken previously, she was sure it was an inferior generic form, packaged to look like the real Revlimid. After one course, she refused to take anymore. She filed a complaint with the FDA. She read the book China Rx.

At this point, we all held our breath.

Her labs started creeping back up. The Myeloma had reared it’s ugly head again.

In December of 2019, she called me, and I could hear she was having trouble breathing, she was literally panting. It was about that same time, she was having work done in her basement, and we naturally assumed it was the dispersal of spores in the walls (she lived in a church, built over 100 years ago). Functioning on that premise, she went to her Primary Care Physician, and he immediately hospitalized her, because her oxygen levels were so low. She was discharged after several days, and I arranged for her to stay in a nearby hotel, until we could have an air quality test performed. The test came back, free of mold, and any other kind of particles that might be of concern. She returned home. In retrospect, and two years into the COVID pandemic, I have this nagging thought – might this have been a really early case of COVID which started this cascade of events – but who knew?

Three days later, she was back at the Emergency Room, and readmitted for supplemental oxygen. At this point, I asked her if she wanted me to come and be with her, but true to her British nature, she said no, she didn’t want to impose, and she would manage. But the phone calls I received from her, from her hospital bed, were getting stranger and stranger.

She called me one night, to say she had seen cowboys knocking on the window of her hospital room. And then another night, she called to say people had an all-out brawl in the hallway, outside her room. I called the nursing station to find out what on earth was going on, and they said none of this occurred, there was no brawl, and there definitely weren’t any cowboys standing in the snow. I asked why is this happening? The answer I received; she is confused. She is old, she is confused. And I said, my Mother has never been confused a day in her life – and she has forgotten more information, than most people have ever learned in their entire lifetime. She is a doctorate trained cellular biologist, with a massive knowledge base for almost anything you ever wanted to know about. This makes no sense. She was completely lucid before the breathing issues started – what was going on. No one had any answers for me.

My Mum was in Indiana and I was in California, so this lack of solid information was so frustrating for me. And I am a Nurse Practitioner – Pediatrics, so granted, I know nothing about Geriatrics, but I understand labs, and changes in mentation are not always to be simply blamed on old age – it was just an easy answer. I finally was able to speak with one of her male nurses, and he went through the labs with me, and it was her BUN and Creatinine levels going haywire. Renal failure most definitely can cause confusion, especially in the elderly. Why, if she was admitted for hypoxia, was she now in acute renal failure? I knew what the answer was, but I didn’t want to hear the answer. It was the opportunistic Myeloma, coming out to play, laughing at us all. No one had said that to me, yet, but having read so much about Multiple Myeloma over the last several years, I knew it would wait, and attack. And boy, did it ever.

Things were getting worse, and my Mum finally conceded in one of her more lucid states, to allow me to come help her – to be her advocate. I know it killed her to ask for help – and when I asked, “Mummy, do you want me to come out and help you, be your voice, and sort this all out?” and she answered in a quietly resigned voice, “Yes please.” – I knew things were bad.

And they were – things were really bad. I made it out to Indiana on December 30, 2019. I arrived in Indiana – in the middle of a snow and ice storm, having come from sunny California, with no coat, no mittens, and only Birkenstocks and drove through the treacherous roads, from South Bend to Plymouth. When I arrived at the hospital the next morning, after a quick stop to Walmart, to buy a cheap winter coat, mittens, and proper shoes – I was so happy to see her sitting up in bed, smiling. But that did not last.

Several days later, I met with her Oncologist, and he said the Myeloma had taken hold and was systematically destroying her kidneys. If she chose not to go back on her medications, there was no hope. Nothing could be done. And over the next two weeks, my Mum was shouted at by the nursing staff (I guess they assume all elderly people are hard of hearing) and talked down to by the attending Hospitalists (when she probably knew more about biochemistry than they would ever begin to understand) and generally treated with not the respect she deserved – she said she had had enough. She wanted no more medications, she just wanted to die – “I just want to bag this – I don’t want to do this anymore.” She was referring to life, she wanted to bag life. I can’t even write this without bawling (it has taken me 2 years to write this post), but she was so brave, she wanted to save the last vestiges of her dignity, and like everything else she had ever done in her life, she did it with elegance, and on her own terms.

She died on January 18th, 2020.

There have been so many times in the last 2 years, when I thought to myself – I will just call Mummy and left her know and then realized she isn’t there. I miss her so much! No, I don’t feel her presence at all. Although, I have gotten whiffs of her hospital room in those last few days, in my house – but not so much anymore. She was very religious, Church of England, and then Episcopalian – I am hoping she was at peace when she died.

I watched her fade her away, becoming thinner and thinner. Just a shell of her strong 6-foot self. She was admitted into the Hospice program, and those people were a godsend. They treated my Mum with such love and respect. For the last 3 days of her life, she was completely non-communicative, and I sat by her side, day after day, hoping for final words – something – but it never happened. I felt like she had already left this earth. It’s a strange thing, watching a parent die, I don’t care how old you are, there is no preparation for such an event. I selfishly felt abandoned, orphaned, even though I was closing in on my 6th decade of life. I tried to touch her, and she pulled away – as if my touch burned her arm. That hurt my feelings – again, somehow, I unwittingly tried to make this about me.

I miss my Mum. In the back of my mind, I hope she felt I was there for her, but I suppose I will never know now.

All I can say – is Multiple Myeloma is an awful, awful illness that can just show up out of nowhere and cause such destruction. I think if she was still on her meds, if the University of Chicago hadn’t changed their medication programs, if she hadn’t started getting her Revlimid from Accredo – she would still be here. I would still have my Mum.

And that is the end of the final chapter of my Mum’s Multiple Myeloma journey. I hope this post will help other families who are contending with this brutal illness. Fight for your loved one, fight the system – because no one else will!

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20 replies »

  1. This is such a moving post. I come from an enormous family, liberally blessed with well-educated professionals, doctors, lawyers, engineers. And it took every one of us on a hands-on basis to help our parents navigate the end-of-life maze of medicine and care. I often wonder how other families manage with fewer people or resources, or deal with the reality that you somehow have to already know what’s wrong and options available in order to get the ‘professionals’ to take correct action.

    I’m so sorry for the loss of your wonderful mother. I’ve had the same experience in the past eight years since my mother’s death of wanting to tell her about a new great-grandchild, my move to a new country, publishing my latest book, or just the things that make up a life.

    Thank you again for sharing your journey.

    • 8 years – so the thought of calling them just to talk, never goes away. Yes, it was just me dealing with this, and trying to make the right decision. My Dad couldn’t travel and my brother had just had eye surgery – so he couldn’t travel – I just never felt like I was up to the task of taking on these monumental decisions. And I have sat here, over the last 2 years second guessing myself.
      Thanks so much for your kind, understanding words! They are greatly appreciated!

  2. this is so heartbreaking! I’m so, so sorry for your loss of your dear mum. I had tears in my eyes as I read this beautifully written post.
    big hugs! <3

    • Thank so much Carol Anne, and hugs back to you too. It was really helpful to get those words out of my brain, let someone else carry the burden and pain, just for a minute. I do feel so much better for having finally competed the post.

  3. Condolences on the loss of your mother…this is a beautifully written post which I hope has been cathargic for you…my two daughters are currently receiving treatment on opposite sides of the world I’m stuck in the middle…Covid has a lot to answer for I just wish it would disappear so I can travel but then I’ll have the problem of which way first…sigh…Have a beautiful week 🙂

    • I am sorry to hear you can’t visit your daughter and spread so far apart – how do you decide which way to go first? I am so COVID-tired. I work at a Pediatric Hospital, have worked through the entire pandemic, every time we think we are seeing light at the end of the tunnel, COVID has another surprise for us. I feel like the Omicron variant will infect enough people, COVID will just die down to having a rotten cold, and we can get back to normal!! Fingers crossed!

      • I think we are all covid tired but more so you being on the front line so to speak…I have much admiration for all you dedicated health professionals you are amazing…I hope you are right about this Omicron ..normal life won’t that be lovely:) x

  4. Oh bless you. That’s tough. All I can say is that, as a fellow church of England/Episcopalian I’m sure she would have died at peace if she had a faith. Maybe that’s why she withdrew from you because she felt it was time to go and if she had h felt your touch she would have been tempted to hang around.

  5. So sorry to hear of your Mum’s passing, I remember how very close the two of you were. And how disheartening about the meds & the way she was treated at the hospital! Of all the places you would think they would appreciate & recognize her expertise,
    I think of you from time to time, Susan, and apologize for it taking so long for me to find this old post! Take care, Cora

    • Hi Cora – thanks for coming by. I think about you too, Cora and hope you are doing well. This isn’t an old post – I just posted it yesterday!!

  6. Oh, I’m so sorry to hear about how much of a struggle this was for you and your mom, and how sad in the end. It seems these days, our elderly parents need advocates more than ever. I know this from experience as well. Thank you for sharing your heart with us. <3 <3

  7. I am of course so sad for your loss, SD. At the same time, I’m proud of the way your beloved Mum stood up for her principles and went out of this cherished life with all the dignity she could muster under the awful circumstances dealt her.
    Please have the best day you possibly can my California blogging friend. Thanks for sharing this thoughtful tale.

  8. Thank you for sharing this story. It truly moved me, especially with the suffering she went through. You took me back to the loss of my parents, my mom at 60 from cancer and my dad at 93 from dementia. There isn’t a day that goes by I don’t think of both of them. I was blessed to grow up in a loving home with three other siblings. Loosing my mom at that age was hard as she passed while my wife was pregnant with our third child which was the last grandchild between me and my siblings. That was 32 years ago and it still feels like yesterday! Again, sorry for your loss and thank you for sharing this story.

    • Thank-you. So sorry to hear about your Mum and at such a young age. The healthcare system, actually the health insurance system does a disservice to the retirees, and I had no idea! Boggles my mind! Take care and I hope all is well with you!!

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