Hello and almost Goodbye September!
Can't believe I am almost to 8 years surviving Myeloma! I've really been focused on this, as Statistics at my Diagnosis, December 30.2009 predicted I wouldn't still be here! Forward march I go... always! Always planning to live, while doubting I would. But always planning to. Each day, week, month, year surprises me I'm still here. Yet I expect it. I'm surprised to still be alive, yet I expect to be. I never assume tomorrow, but I hope for many tomorrows.
It was pointed out to me recently, that I really do represent someone that actually "lives in the moment". Yes, I do. I really do. It's all about what's happening now... as who knows what Myeloma has planned for me. I don't, do you? I just want to make the most of each day I am here. I want to continue to live life, breathe in life, hear life surrounding me, participate in life...
So on that note, I have a story for you, as I did just that... participate in life, sharing my life story with others.
Hello again- it's 9.28.17 now...
What a week. Chemo crash began yesterday from Tuesday's Darzalex, combined with being in the middle of my 3 weeks of Pomalyst, and Monday and Tuesday's Dex steroids. I'm just a Sloth without any helium today. But here's my exciting story:
Monday, September 25, I presented my myeloma story at Amgen.
Awhile back, I joined a "cancer patient advocacy group" called "Voices of Experience", where we are invited to share our story and treatment experiences related to Amgen's oncology products. Amgen is pivotal in my life, as back in 2015-2016, the chemo/immunotherapy I was on, (Kyprolis), is developed and manufactured by Amgen, and Kyprolis saved my life. I was more than happy to share my successful journey with staff members, as I really have a passion to thank everyone involved in all my successful and life saving treatments thus far. I'm not sure how I found the VOE group, but I like to put myself out there to share my journey and experiences with anyone, or any group that wants to hear from me. Similar to sharing my life, via this blog.
As college counselor Julie, I presented to student groups often, but the idea of speaking to all these smart bio-pharmaceutical business execs, pharmacists, oncologists, and researchers was a bit intimidating, I have to admit. The anticipation of who, how many, how will it go, will I be interesting, on point, intelligent sounding and fluent, nearly did me in beforehand! But I have always believed we better ourselves and those we are connected to, by taking "self development risks". Some may interpret "risks" as extreme sports, physical challenges, etc, but for me, it's the mental challenges that I embrace and challenge myself with.
Prior to the speaking event, I had several phone consults with representatives of Voices of Experience and Amgen staff members, letting me know what to expect, perimeters of my presentation, etc. Everyone was kind, supportive and encouraging, and I accepted the challenge to share my crazy myeloma journey. But how to condense almost 8 years of medical treatments and the personal psychological details of an incurable cancer diagnosis, into a limited 15-30 minute presentation! I need hours to share this journey of mine I laughed.
So for a week prior, I formulated my presentation in my head, and jotted notes down. Basically, I had to condense this entire Blog into a limited speech. So much to share, so little time. One night, while brushing my teeth before bed, my whole presentation came to me, so I grabbed my phone, and wrote it out in minutes and emailed it to myself. So funny how those moments of inspiration come to us. Sunday prior to the Monday presentation, I reviewed and rewrote my thoughts out, but I am not the type to practice a speech. Never have. I sort out ideas in my head, gather my important thoughts together, and rely on my natural "wing it style", and "no filter, shock 'em with zingers style", to deliver my message with an impact.
Monday was a beautiful drive out there, and I met up with my gracious Amgen "host-agent" Kathryn. We had a chance to get to know one another via phone, over the past week, and shared our crazy cancer stories. What a survivor she is! And she's still working and commuting. We laughed at our GI challenges, while trying to navigate "normal life" experiences. Such a wonderful lady, so honored to know her and have her guide me through this event!
But as the staff filed in, and various people came up to say hello and introduce themselves, I felt right at home, and was happy I had accepted the invitation to share my story. Still quite "aware" of the "brainpower" in the room, and the brilliance of who all these people are, I worked on settling my old nerves of self doubt, and worked on "humanizing" the moment.
Selfie time as staff files in
Voices of Experience created a lovely slide show
of pictures I sent them
"And finally, my last full body skeletal scan revealed myeloma is really
trying to eat me up from the inside out , as I now have a Hole In My Head, on the L side!! Yes, a Hole in my Head! My first Lytic Lesion, along with a hard tumor on the R side...
I continued on...
"Last
year, I asked my COH, SCT doctor point blank:
“ So Doc, how many Years would I have if I stopped all treatments, just decided I'd had enough of side effects and feeling yucky all the time, how many years would I have”...
He said ..... “Julie, you wouldn't
have years, you would have months”....
"What??!! I thought maybe he didn't hear
my question correctly... So I restated it... emphasizing YEARS...
"He leaned in kindly to me and my husband, and said... “Julie, I'm not GOD, nor do I have a crystal ball, but without treatments, you would have months... how many months, we don't know, but it would be months, not years... "
And I concluded with:
"Thank
you, to all of you, for doing all that you
do, to help save the lives of cancer patients like myself. I'm alive because of
all of you and your colleagues! Thank you for listening and caring as you do!
"My Counseling motto was: "Saving
The World, One Student At A Time...
Yours is: Saving The World, One Cancer
Patient At A Time....
Yes, all went well and moral to my story, take those risks, get out of your comfort zone, push those personal boundaries ... The risk is scary, the challenge rewarding, and the outcome invigorating!
Make a difference everyday, no matter how big or small! But get out there and make a difference. Better to try and know, rather than let fear own you, as you'll always wonder what could have been...
If you are Myeloma patient, or other cancer patient, or whatever your "challenge" or "success" is... get out there and share your story, as so many can benefit from what you have experienced medically and psychologically!
Our words are powerful, our thoughts important, your story matters!
Words I live by daily!
Thank you for checking in and caring as you do!
I love comments, so I know who you are and what your life is!
You're awesome, Julie!
ReplyDeleteWhy thank you JD :)) So are you, and thank you so much for checking in and posting! xoxo
DeleteYay Julie! So proud of you for pushing those boundaries and helping to put a human face on the work Amgen is doing to save our lives. I'm starting out on carfilzomib as a recently diagnosed person, so I especially appreciate it!
ReplyDeleteAww, thank you Bernadette :)) Thank you for appreciating my efforts! Go Carfilzomib Kyprolis!
DeletePlease let me know how it goes for you. I found it quite tolerable. Less GI stuff than Revlimid, for sure! Thank you for checking in and commenting, and be sure to update me on your status! :))