6 years ago December 30, 2009, I never thought I would see December 30, 2015! But here I am and fighting harder than I knew I could or would have to!
6 years ago today I was diagnosed with Multiple Myeloma. Multiple-I-Had-No-Idea-What-You-Were-Myeloma! I think I’ve posted a reflective blog about what happened on 12.30.2009 each diagnosis anniversary (2010, 2011, 2012, 2013, 2014), so this post I’ll change it up a bit.
Talk about a roller-coaster year, 2015 has been that. You can read all about my crazy treatment ups and downs this year (see my 2015 blog post list on the right). From dealing with crazy random, unpredictable, volcanic lower GI emergency “situations”, to trying too hard to be “normal”, to carrying on as if I didn’t have terminal incurable cancer, to being too scared to change chemo medications because Revlimid stopped being as effective for me, to the sudden tragedy of my first original amazing oncologist passing away, to my immune system being so weak I was actually turned AWAY from starting my new IV chemo Kyprolis, to my current I-can’t-believe-my-numbers-are-improving status!
6 years ago today I received news NO one ever ever ever never wants to receive. I received a permanent life changing diagnosis, that I still shake my head at, and try really really hard to process and digest mentally. Receiving any cancer diagnosis is overwhelming to say the least, but to receive a cancer diagnosis with the caveat that “there is no cure”, is just mind bending, just too immense, too intense, too mind boggling, and devastating to comprehend. And to complicate things, Myeloma can be deceiving to most, as we often appear “ok” on the outside, while being really really sick on the inside.
6 years ago today when I was diagnosed with Multiple Myeloma, I didn’t have a clue what it was. Fortunately I was diagnosed quickly, relative to what most people go through prior to a Myeloma diagnosis. I had very alarming “routine” blood test results October 2009. These alerted my GP something was really amiss internally with me. I was extremely anemic as a result of a lot of bleeding-out for a year or 2 (yes my stupidity…), weak, tired, sickly, fatigued, dizzy, fuzzy mentally, weird bone pains, low appetite, etc. Then several subsequent blood tests later November 2009, revealed even more concerning blood chemistry stats. As a result, I was referred to Hematology Oncology December 14, 2009. More blood tests and scary medical conversations, then… I had my first Bone Marrow Biopsy on December 18, 2009 and that’s when I began to realize something serious was up.
|This picture, in the cafeteria, after my diagnosis… I never saw the words, just the picture…|
On 12.30.2009, around 11:30am, Dr Lee very patiently explained my Bone Marrow Biopsy results, blood test results, and calmly explained my Multiple Myeloma diagnosis. My.What.Diagnosis?! She then sent me for more blood tests and to pick up several prescriptions. It was the day before New Years Eve. Jim and I became walking zombies. Stunned rag dolls, just nodding and bobbing, saying huh? what? when? where? how? why? get what? do what? take it how? eat what? return when? She was so kind, so patient, wrote notes out for me, told us to go down to the cafeteria and eat something while we waited for my blood test results to see if I needed platelets, or a transfusion, or this or that. I couldn’t comprehend what I was being told. I was numb. Jim more numb, more tears. I couldn’t process it. Inside the Cafeteria I just stared at that forest picture (above). I didn’t see the words. I only saw the trees. I stared at the picture numbly and said to myself, “I have CANCER. I, Julie have CANCER. My life is FOREVER changed. I have CANCER. I have INCURABLE CANCER. My life has changed Forever and Ever. I may not have long to live. I have terminal CANCER. I won’t be able to hike in a forest like this picture, anymore…” was what I remember saying in my head. Tears streaming down my cheeks. I just stared at the forest picture. I didn’t see the words. Tears streaming down my face. I just keep mumbling… I.Have.Cancer.Incurable.Terminal.Cancer.
Cancer changes you. Battling incurable cancer for 6 years changes you. Being treated for cancer continually, changes you. Wears on you. Wears you down. Mentally and Physically. But you battle. You battle for all it’s worth. You battle for hope. Hope that you have additional years…
Here’s my 2 cents. What I know. What I learned. What I do:
Pay attention, listen to your body, Don’t ignore strange symptoms, Ever!
Get regular blood tests, discuss the results, in detail
Be proactive with your health
Eat well, Healthy, but Fun
Lower your stress. Stress is a trigger. Stress is a killer.
Get rid of negativity and negative people
Laugh a lot, a lot, often!
Speak your mind, be real, be you, be sincere
Shut up, listen, process, analyze
Breathe very deeply often
Smile often. Smile at the little things you notice
Be around people that Inspire you, Energize you, Empower you, Make you happy
Shake off negativity, delete it from your life
Delete negative things from your life
Laugh at ridiculousness
Laugh out loud a lot
Laugh just because
Cry when you need to
Don’t repress your feelings
Ask a lot of questions, don’t fear honest answers
Rid your life of that which brings you down, or complicates things unnecessarily
Less is More
Less really is More
Eat and drink the rainbow, but have ice cream and cookies and potato chips too
Don’t try to be in control all the time
Trying to control things adds big stress
Balance, moderation, simplicity
Impatience becomes Patience
Do for you
Do for others
Be brave, but it’s ok to be scared
Fear heightens our awareness, insights and our acuity
Don’t fear, fear
Make your monsters your friend
Talk, share, laugh, ask, question
Do what you love
Love what you do
Do because you can
Pay attention to your needs
Pay attention to other’s needs
Set boundaries, and don’t feel guilty
Big things become small things
Live life now, don’t wait
Use your things, don’t wait
Every day is special
Every day is a Bucket List day
Say yes as often as you can
But say No just as freely
Play and be playful
Do your hobbies
Love your job, your career, your goals
Book that trip, take that walk, ride what you love to ride
Breathe in nature and all this beautiful earth offers
Appreciate others always
Say please and thank you
Smile with others, to others and while alone
Notice the little things
Process the big things
Stop and pay attention
Be aware, notice life, immerse yourself
Thank your medical team, your family, your friends, your co workers
Rescue, adopt an abandoned, abused, needy animal
Or take treats to your local animal shelter
Donate clothes, blankets, shoes to those that need them
Put a smile on someone’s face as often as you can
Keep a smile on your face as often as you can
Take a lot of pictures
Write your story
Tell your story
Give, give however you can
Give of yourself, your time, your things, your accomplishments
Share you with them
Say it, express it
Live Life Every Day
Hug those you love, always tell them you love them
You Have No Guarantee of Tomorrow- Embrace Life Now!
As 2015 comes to a close, I’d like to thank all of you for reading and following my myeloma journey via this blog. If you are battling this stupid cancer also, I wish you the very best of luck on your journey pummeling myeloma. I hope my writings and musings have helped you, or given you hope, or at least entertained you. If you are my friend, family, colleague, I thank you for continuing to check in and following my status updates.
As we leave 2015, my 5th year battling monster myeloma, I say good bye to posting on the 5’s. As we turn the calendar over to 2016, and I enter my 6th year of battling monster myeloma, look for my posts now on the 6’s.
I’m not a math whiz or math major, but get this:
5 x 6 = 30
I don’t think I’ll ever have another math formula like this again!
Goodbye 5, Hello 6, and Today is the 30th.
5 x 6 = 30
Wow. Just Wow!
And finally, speaking of survivors, remember my student-friend-like-a-son Brian. Triple Cancer Survivor Brian. We met up a while ago and he told me of his rap song, representing his cancer battle. Take a listen. Really listen to his words. It’s really amazing, just like him!
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!