To Share or Not Share… Your Myeloma Story

Hello 8.18.18
Lots of 8’s today, this 8.18.18 in my 8th year with Myeloma.

Recently, I was chatting with other Myeloma pals about our reasons, risks, benefits and the “need” to, or not, share our Myeloma story.

Since I spent my adult life as a college Counselor- analyzing and delving deep into life– sharing comes natural to me on all levels. But I am highly aware that I am in the minority, not the majority, when it comes to sharing and bearing deep thoughts, feelings, anxieties, stories, events, challenges, etc. Personally, I cannot imagine keeping one’s cancer story inside. It’s just so HUGE and life changing. As much as we don’t want the title of “Cancer Patient”, it is us. We can suppress, repress and deny, but once diagnosed, cancer is us, and a huge part of our life. It invades our being. Our body has betrayed us, and we cannot magically undo what has happened cellularly. Especially with an Incurable cancer such as Myeloma, which is a Forever cancer. I’ve had to accept Myeloma will affect my life Forever, and I have choosen to share my journey, and all the experiences and emotions that go along with it. It helps me, and I hope it helps those that I share with.

No doubt Cancer changes us deeply. The day, the minute of our diagnosis, we are changed… forever and ever. Deeply, profoundly, irrevocably. We are never the same again, no matter what we try to convince ourselves of. A cancer diagnosis changes our life, our view of life forever. It changes every facet of our lives and those in our lives are also forever affected. How we, the cancer “recipient” deals with the diagnosis, treatment and future journey, can determine how everyone in our circle processes it, handles it.

When I was diagnosed, mid morning, early afternoon December 30, 2009, I was in shock, like most everyone would be. I was incredulous, in disbelief, and in denial. I just knew my labs were mixed up with someone else’s, or the lab results were in error. It just wasn’t possible, that I could have cancer, and INCURABLE cancer at that! I processed it as if I was hearing a diagnosis on a vehicle or other mechanical thing that just needed to be repaired. Take more labs, go get these pills, plan for this, plan for that, come back for this and that. I went into procedure mode. I kept saying cancer cancer cancer cancer cancer over and over and over and over to myself. I tried to have it sink in. It didn’t. As I walked the corridors of Kaiser, from Oncology Hematology to the lab, to the cafeteria, I remember suddenly feeling like an entirely different person. I was suddenly not “me” anymore. For one brief moment, I looked into a poster of a forest and cried, this new reality slamming me, that my life, as I knew it, would never ever be the same again, and I wouldn’t be able to be or do, what I once did, no matter what I tried to pretend or convince myself of. I had 70% Myeloma cancer coursing through my body, and the fight was on. For my life.

I don’t think the depth of the situation hit Jim at that time. He was overwhelmed with the medical information, but heard Cancer, and that was it. He was devastated for me. He went in to “doing mode”, keeping busy all the time mode.

Driving home, I think I thought about how to tell our kids, family members, friends, colleagues. I was trying to process what I had been told. I was in shock, but acutely aware of my sudden “new normal”. I think foremost on my mind was “how to share” this crazy, awful, unbelievable news. I was suddenly a changed person, not by choice, and needed to share this weirdness. I suddenly felt so different. I felt like a space alien in my own body. I needed to share what had happened to me. Not everyone does. I did, and I do.

To this day, I share. I share my story with everyone, everywhere, anytime. Myeloma is my story. Myeloma has taken over my life. Myeloma changed my life entirely. Changed my lifestyle, my career, my body, my routine, how I  think, eat, sleep, suffer, and occasionally play. Myeloma invaded and changed everything about me and my life, internally and externally. I live with Myeloma every second of the day and night. I cannot avoid Myeloma’s symptoms and ravages on my body and life. I am reminded I have incurable cancer every day, most every moment. I am in continuous medical treatment, have continual, on going side effects, have bones that have holes in them from head to feet. I’m always having to avoid cootie contamination, and the possibility of breaking bones. I feel so fragile and vulnerable now. I am an entirely different person than I was prior to diagnosis. If it wasn’t for being diagnosed with Myeloma, my life would be radically, incredibly different right now. I can’t even imagine what my life would be now… One thing I do know, I would not be writing this blog. You would not know me, and I, you…

From the beginning, I felt I “had” to share my story. I had to tell my family, my friends, my colleagues. How could I not. Nothing about my life was the same since 12/30/2009. How could I “hide” the fact that I was now taking powerful medications 24/7 that caused, causes me crazy physiological and psychological havoc! How could I not tell those around me. I was no longer silly, carefree, “healthy”, productive, active Julie. I was now a sickie. Very sick. Everything was different. I had to give an explanation for all the things I “couldn’t do” any more. It would be weird if I didn’t, with all the things that changed. Forward march I went with explanations, descriptions, and being incredulous that I was talking about me, describing my “new life, my new normal”. “What the heck is Myeloma?”, everyone asked. “Why is it not curable?”, they couldn’t understand. “Why do you have to always be in treatment, won’t you be in remission or cured, after all the medications?” “How come they can’t cure it? like all the other cancers.” “Why can’t you take this or that and be done with it. How can you look so good and be so sick?” “Wow, you still have hair”… LOL 8 years later… here I am, same status, same questions, different meds, still battling myeloma, same story, different day.

But this is my life, and what works for my life. My choices are not for everyone. I can’t pretend I’m not battling a serious enemy every second, of every day.

I feel as if I “need” to tell my story. Partly because I have so many things I cannot do any more, or because I have to be super cautious about so much now. All my compromised immune system precautions could appear quite “odd” to the outsider who knows nothing about me, so I briefly explain my status. I dislike being “high maintenance”, but I have to protect myself. My life is different, I am so different, my “needs” are so different. I feel I must explain. And then there’s the “external judgement”. Because I am not the type to “let myself go”, externally, I don’t look sick.. But when I am “sick”, wow I do look SICK, especially when I have a fever, like all of last July! I am forever explaining how I can “look good” on the outside, but be so sick cellulary, on the inside. Same story for most myeloma patients. There are times I just want to shave my head, so the visual of “CANCER PATIENT” screams out at people when they see me. I am exhausted explaining this aspect of myeloma, almost justifying my status… Some don’t understand “why I am still alive”, while others don’t get “why I am still in treatment”…

I’ve shared my story with anyone that wants to know. I share for me, for them, for you. I share personally and I’ve shared my story in professional situations. I’ve been interviewed about my story quite a few times. I share my story to inform, educate, and to lend empathy, understanding to others. I share my story in the Chemo Lab, when asked. So many patients are incredulous that Myeloma is truly incurable, and that I have been treating for over 8 years. When I tell my story to fellow cancer patients, non-myeloma cancer patients, it hits me what I have been through and for how long. It is incredible to have an incurable cancer, and have been through what I have been through, and continue to go through. Sometimes I’m just so used to being a cancer patient, that I “forget” how crazy and challenging my life is to outsiders. Other times I am acutely aware how so many others are so much “worse off” than I am, and their myeloma is much more visible. But I share me, my life, my story, my struggles and successes, and I want to know yours too.

2016
Sharing my story at Amgen
My eyes look like slits, as it was early in the morning

This quote should have read: 

“I feel more alive than ever”…
WHEN ON STEROIDS!”
lol lol :))

Amgen 2017

Kaiser Cancer Day 2016

And on and on and on…
How lucky am I that others want to hear my crazy story!
Sharing our stories helps others understand what we are going through, and as a result, we enrich their lives, while clarifying ours. For me, being diagnosed with myeloma cancer, so completely changed my life, that I can’t separate me and my diagnosis. Some people can, and are adamant that they are “not their diagnosis”. I think that’s awesome for them, and perhaps they can live their life, and engage in their daily activities without cancer or treatments continually reminding them of their diagnosis and status. For me,… myeloma affects everything I do, and everything I am, because myeloma stole my life as I once knew it… and nothing will ever be the “same” for me again…

The Chemo Lab is my 2nd home
for life, forever,
because myeloma stole my life.
That Is My Reality
Live happy, live well, and make a difference somewhere, somehow, 
with someone or something as often as you can!