8 Years Ago Today, on 12.30.09, I Was Diagnosed with “high risk” Myeloma.
Today I celebrate my life, my health (what “little” I have), and all
those in my life that have helped me stay alive for these past 8 years! On this
8 year anniversary of my Myeloma diagnosis, I can’t completely nor adequately
express the gratitude and “surprise” that I am still here to write
8 years ago today, I
was given a death sentence.
I had never heard of Multiple Myeloma, as most of you never had either. I
was told a dizzying amount of technical medical information that day, that
changed my life forever. I was unable to comprehend what I was being told. I
sat in utter disbelief. Jim cried. But one of the main statements I absorbed,
was that Myeloma, Multiple Myeloma, is incurable, and I would be in treatment
for life, whatever length my life forward would be.
Was I scared? No. I was shocked. Too shocked to be scared. Totally stunned. This was news that didn’t fit with my life plans, and I just couldn’t fully process what I was told or how terminally ill I was … then, now and for my forever.
See, on Dec 18, 2009, I had my first painful, reality awakening Bone Marrow Biopsy. It hurt physically and mentally. That was the first slam of my new reality, of how serious my situation was, as up to that point , I just thought I had very low blood counts due to extreme anemia, and a severely compromised immune system.
What I didn’t know on Dec 18, I found out on Dec 30. I was told I had 70% cancerous plasma myeloma cells coursing through my body. Cancer was raging throughout every part of me, in my plasma cells, in my bone marrow, in my blood, and I was a very sick puppy.
Dec 30, 2009 I was given a death sentence.
Today, Dec 30, 2017, incredibly, I have defied the odds. To stay alive, I have ingested and injected more chemo treatments in 8 years than I can count. I have survived a Stem Cell Transplant (July 2010), that many do not. I have responded to new chemo cocktails when my Myeloma numbers were almost 15 times above the high end of normal. In other words, I am a “medical miracle ” and am here to tell you my story. Myeloma is trying to kill me, but so far Team Julie is winning.
Why I have survived against all odds, I’m not quite sure, but I do know my respect for medical science, traditional medical treatments and my own disbelief, perhaps a bit of denial of my situation, is the reason I am still here. I have gratefulness and gratitude beyond words, and feel so incredibly fortunate and blessed to still walk this beautiful earth.
Sunset in my backyard the other day!
I am thankful and grateful for all of you caring about me, and supporting me throughout this unbelievable journey. I am thankful and grateful for my amazing medical team of Doctors, Nurses, Chemo Lab Pharmacists, and all the Myeloma Researchers, that have medically saved my life. I am thankful and grateful for my family, friends (near and far, known and unknown) and my colleagues for being there for me, and caring about me as you have and continue to.
In honor of this amazing life
anniversary, I told my kids I was going to shave my head, and proudly parade
around as a visible cancer patient, so those that just don’t get the
seriousness of my situation might just do so, if I “looked like a cancer
patient”. See, Myeloma is an “invisible cancer”. I don’t have
visible, external scars, that alert outsiders I am a terminal, incurable cancer
patient. You will only see me out and about, or in social settings on the 1 or
2 days per week I feel ok, when I’m not depleted by extreme, immobilizing fatigue,
and chemo side effects, or when I have taken powerful steroids so I am
functional and fun.
Most patients in the Myeloma club echo this problem. We are told “but you look so good, you can’t be “that” sick”. We have hair, we fix ourselves up, and try to be stronger than we really are. Our fear and worries about illness, sickness, germs and cross contamination are not taken seriously. Sadly most just don’t understand that Myeloma is an Immune System Cancer, that depletes our ability to fight off cooties. Did you know most myeloma patients die from illnesses “normal healthy” people quickly recover from. Our severely compromised immune just can’t fight off germs as a normal immune system can. We can’t bounce back from illness that normal healthy people can. And as I write this, sadly, I am sick again. Again, with a lousy head cold, cough, fever..
Because this is such a huge, monumental anniversary for me, here are my previous blog post thoughts and reflections, on this day, over the last 7 years! Yes, 7 years of Myeloma survival has rolled over to 8! Pretty amazing. So glad I’ve recorded my life and feelings here on this blog…
I will end with words you don’t want to hear, but I need to write them. Multiple Myeloma is a terminal, incurable cancer. We are on lifetime chemo, immunotherapies, any treatment protocol available, or clinical trial we can tolerate, to stay alive. To Just Stay Alive. And just because we look ok on the outside, please do not assume we are actually ok on the inside.
Here I am Dec 25, 2009 (with my Uncle Murray(RIP)
Me, unknowingly full of 70% cancerous Myeloma cells
How sick, cancerous and “near death” do I look?
Dec 25, 2017- How Cancerous do I look here?
8 years later…
After almost 8 years of chemo, immunotherapies,
with more treatments than I can count!
Thank you loyal followers and readers. Thank you for sharing almost 8 years of my life with me. Thank you to everyone that takes the time to read my posts, and care about my life. This blog evolved in a way I never planned. I am so grateful to be here to share my thoughts with you, and hope my thoughts and reflections have impacted your life, as they have mine.
Wishing you all the best for the remaining hours of 2017, and best wishes for a happy, healthy, rewarding 2018!
Live happy, live well, and make a difference somewhere, somehow,
with someone or something as often as you can!