Please note – this three part series was written at the request of my mother – who felt it was important information for other families struggling to get answers about Multiple Myeloma, and where (and how) to get to help.
We all dread that call, the call everyone will get sometime during their adult years – the call regarding their parents, a relative, or a loved one. The call that shatters your slumber, during the early morning hours, and sends your heart racing. The call to let you know a family member or friend is in dire need, or even worse, no longer needing anything.
I received that call about 10 months ago, in the early morning. I was awake, plying my addled brain with buckets of coffee, trying to stimulate some motivation to prepare for work. Surrounded by my puppies, I was enjoying the coolness of the September morning on the patio, when I received a call from my father. That, in and of itself, was disconcerting. My father never phones me – I always call him at the arranged times on Sunday afternoon. I asked if he was okay and he said “Yes, yes – I am fine, but it’s your mother. She asked me to call you. She needs your help.” He told me my mother was in the hospital and that I should call her immediately.
My mother is one of the most intelligent, self-reliant people I have ever had the privilege of knowing. She is an amazing person! And for her to request anyone’s help – is, frankly, unheard of. With shaking hands, I dialed her number. She answered – her voice was weak, gravelly. I asked her what was wrong and she said she had been brought to the Emergency Room after slumping to the floor, while arising from her bed. My Mum sounded horrible, and the tears welled up in my eyes. I tried to come across as strong and rational, I wanted to be adult about all of this, but holding back the tears made my throat hurt and my nose stuffy. My Mum said – “I am in the hospital. They don’t know what is wrong with me.” I asked her if she need me to come to Indiana, and she said “Yes, please.”
Bleary-eyed, I was on a plane at 6 o’clock the next morning. My Mum had been transferred out of the hospital, to a rehabilitation facility. She had been diagnosed with Pneumonia and some other infections, but was so weak, she could not be discharged to home. Over the next several days, it was clear the root of her problems stemmed from Multiple Myeloma. I had never heard of this and of course, began a frantic search for any information I could find on this disease. It is a cancer that affects the plasma cells, which infiltrate the bone marrow, crowding out healthy cells. It is a fairly rare cancer. There is no cure for it. With a trio of medications as the inital round of therapy, one can go into remission – hopefully. If left untreated, the progression of the disease will lead to frequent infections, kidney problems, bone fractures, anemia and worse things – which honestly I can’t bring myself to type here.
The Oncologist at the time had recommended the usual trio of medications – Revlimid, Velcade and Dexamethasone. After doing extensive research on these mediciations, which included an analysis of each medications chemical structure (she has a strong background in biochemistry) my Mum had decided to forego treatment because of the concerning side effects. Prior to her diagnosis, she had been experiencing increasing muscle weakness in both her legs, and was concerned that if she agreed to the recommended medication regimen, the resulting side effects might completely incapacitate her, leaving her unable to leave a relatively normal life. And according to my Mum, she would rather not be alive, if she couldn’t do her normal activities.
And so, we waited and watched. Because she lives in Indiana and I live in California – we arranged for me to call her every day, first thing in the morning, at 6AM on workdays, and 7AM on weekends and holidays. We have spoken everyday (with the exception of a few because of time conflicts) since last October. She has seen the local Oncologist about every 3 months. I sense that he is not happy with my Mum’s decision to not start treatment – but he respected her wishes and has monitored her closely.
Things were going along fairly well – her labs were stable, she was getting about, until about 2 months ago. That is when she agreed something else needed to be done.
To be continued.
I’m so sorry for your devastating news and I’m so sorry about you’re mom’s diagnosis.This must have knocked you all sideways. I know you’ll honour all her decisions though desperation may want you to persuade her otherwise. The best thing you can do for her is to be there even if that means at the end of the phone line.
There’s no point in my telling you to be strong as this is your mother whose been there you whole life, you’ll no doubt revert to childhood in private.
My thoughts and best wishes are with you all.
Thank you David for your kind words. She is doing better, and that will be in the second post. My goal in writing these posts (working on the second one now) is to let people know there are options out there, but it takes some time to find them. I am hoping to save some other families, from having to dig so hard.
I hope everything is going well for you, I must come over and visit (I have been the worst blogging friend – sorry about that).
I am so very sorry.
Hi CIndy – I know, it was really scary at first, because we had no knowledge of this illness. But my Mum is incredibly strong, and together we are working to get her the help she needs. I hope you are doing well, and thank-you so much for the comment!!!!
Thanks CIndy – we are slogging through all of this trying to figure things out. It requires a huge learning curve, trying to understand the process, and get some useful information. But we are managing – and my Mum seems to be doing quite well right now – thanks goodness for that!!
Oh my, this is so sad to hear. I understand what it’s like to do long distance care-taking. I had the same with my mom when I lived in Florida (my mom has multiple health issues). I’ll put you and your mom in my prayers. I do pray for those in need every morning. Thank you for sharing.
Hi Lori, thank-you so much for your kind wishes. I was asked by my Mum to write these posts, in hope that we could save others the troubles and frustration we have had getting answers, finding solutions. She is doing well, but it is hard not being closer to her. I hope all is well with you!!!