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Friday, December 30, 2016

7 Year Myeloma Diagnosis Anniversary! Goodbye 2016, Hello 2017

Hello 12.30.2016

It's my 7 year Myeloma Diagnosis Anniversary!
So many thoughts, so much to "celebrate"! Well maybe "celebrate" is the wrong adjective. How about, so much to "acknowledge", so much to reflect on, so much process! What were YOU doing 7 years ago today between 11:00 and 12:30 am, December 30, 2009?


Yes, 7 years ago today I was diagnosed with Multiple worthless Myeloma. Shock of my life then, now and forever. I still think they got my file confused with someone else.. wink wink!

Yes, 7 years worth of myeloma symptoms... actually make that 8 or 9 years worth of symptoms, as I had signs and symptoms in 2008 and 2009, but thought they were just "change of life" issues lol.

7 years worth of What the Heck, How Can This Be,You've Got the Wrong Gal, Myeloma.

7 years worth of shock, bite the bullet, take lots of meds, chemo, steroids, prep for stem cell transplant July 2010, take lots of maintenance chemo, try to move forward "normally", try to recapture my life as I knew it, then more chemo, more chemo, more chemo and here I am, 12.30.2016, many many chemos, treatments and 24/7 unrelenting side effects later.

7 years of moving forward, hoping for magic. Hoping my body is stronger than cancer. Hoping various chemo regimens keep myeloma in check, but knowing THE medical reality and MY prognosis reality. Knowing my life is balancing on a fragile cliff of possibilities and potentialities. Living every moment, knowing myeloma is incurable, and I will be in treatment forever...

As I leave 2016 behind, I am pensive and pissed. I am strong, but challenged and sad. I am hopeful that Pomalyst will begin pummeling myeloma. I am hopeful my organs can remain "healthy", while chemo kills the myeloma cells. Most of the time I have many words about my circumstances. Today I am feeling less wordy. I'm overwhelmed in so many ways. Positive and negative. Grateful and angry. Happy and sad. Mystified, incredulous, optimistic, and I know "the facts".

Goodbye 2016


Hello 2017


Hello 2017
and cheers to 7 years surviving Myeloma
Hoping I will love 2017
and myeloma hates 2017!

Thought it would be interesting and fun to take a walk down my posting memory lane, as I've reflected on this date, December 30, since I began this blog. I can see the evolution of my musings, expression of details and level of psychological disclosure from 2010 to now. I've linked my Dec 30 posts here, in case you too want to read my annual thoughts on this life changing day of my life. The details of my diagnosis will FOREVER be cemented in my psyche, but it's so interesting for me to read what came out of my fingertips each year. Not sure which post is my favorite, but many have let me know my "list" from last year's post was very meaningful to them and their lives. So here it is (below the links), in case you don't have time to peruse all my Dec 30th posts.

Reflections on a life changed by a Multiple Myeloma diagnosis, Dec 30, 2009:

Dec 30, 2010 I'm ALIVE!! One Year Ago Today I was Diagnosed

Dec 30, 2011 Diagnosis: Multiple Myeloma 12-30-2009

Dec 30, 2012 3 years ago today I was diagnosed with CANCER

Dec 30, 2013 4 years and counting..still counting...never stop counting!
 
Dec 30, 2014 5 Years ago TODAY... Boom! MM forever Changed my Life

Dec 30, 2015 6 Years Ago Today, and I'm Still Here To Talk About It! 5 x 6 = 30


And "The 2015 List" of life reflections, a life forever changed by a Myeloma diagnosis: 

Cancer changes you. Battling incurable cancer for 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
Hydrate
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 deeply
Breathe very deeply often 
Hydrate
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
Hydrate
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  
Hydrate
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
Hydrate
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
Tip big
Smile
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
Hydrate
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
Pay attention
Notice
Be aware
Smile
Laugh
Love
Be comfortable
Be honest
Be real
Be grateful
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!

*************





Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!  



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9 comments:

  1. AnonymousDecember 31, 2016

    Thank you SO much for this wonderful post. It really hits home. God bless you for a happy and as healthy as possible New Year!

    ReplyDelete
    Replies
    1. JulieJanuary 07, 2017

      Hi Anonymous! Thank you so much for letting me know you enjoyed my post! Happy New Year to you and yours also!

      Delete
  2. AnonymousJanuary 04, 2017

    Happy New Year to you my friend. Very important post I like it. The words you say I can hear your struggle, challenges, hurts and hopes. Each day is a blessing and telling those around "I love you" is so touching because we don't know what the future holds. Shoshauni has learned this and is pretty good at it now. Again, I can't tell you how grateful I am to have had you by my side to kick my in the butt regarding my education. I have that BA Degree and yet I feel lost, I'm either over qualified, not qualified and/or don't have teaching credentials. WHAT? My private school I worked for allowed me to do thing's I only dreamed of doing: teaching PE and coaching sports (being paid). My passionate for coaching won't get me "rich" but I want to spread my knowledge, confidence building and recruiting to a different level. But like you said, I can't stay in a rut and just wish/dream about it. Action is what comes next. Take care my friend and I pray for you everyday. Still waiting for that visit with you when you're up to it. Miss you - Theresa

    ReplyDelete
    Replies
    1. JulieJanuary 07, 2017

      Hi Theresa, yes it's crazy with all your life time sports experience, you haven't been able to find a position where you can really share all your talents. Can't believe Shoshauni is all "grown up"!! Where did time go for all of us! Hope to see u very soon. I'll message you. Love you sweet friend! Thanks for always checking in and letting me know you read my rants! xoxo

      Delete
  3. AnonymousJanuary 10, 2017

    My mom died today after battling multiple myeloma for four years so be blessed and know that you are still her for a reason.

    ReplyDelete
    Replies
    1. JulieJune 05, 2017

      Hi Anonymous, I am so very sorry to read of your Mom's passing :(( I can only imagine her myeloma journey for 4 years. If you read this, please tell me her story to honor her. Thank you for your kind words, and I truly don't understand why some patients are taken too early and some last beyond imagination. I have been close to "not making it" several times, then the chemo meds bring me back. I hate this for you and everyone else suffering from this insane cancer. My heart is with you and your family. Hoping beautiful memories sustain you and your family. xoxo

      Delete
  4. UnknownJanuary 25, 2017

    Hi Julie, my name is Judy. After reading your posts back from 2012, I thank you and always relate to your feelings, emotions, and especially your humor, it does help our fear and is an outlet for other feelings including anger. Give your animals a pat for me, but be careful for those manure bins. Much love to you and a kind 2017.

    ReplyDelete
    Replies
    1. JulieJune 05, 2017

      Hi Judy, just saw your comment! Thank you so very much for commenting letting me know you've been following my crazy tale since 2012! Yes, the spectrum of emotions we feel from our journey is like none other. Thank you for appreciating my open expression of all my feelings. I do always try to see the "glass half full" and that fine line between "humor and tragedy" :)) Please tell me your story if you see this! Thank you for commenting and letting me know you've been following since 2012!! wow :)) xoxo

      Delete
  5. JulieJune 05, 2017

    Thank you Anna for checking in and appreciating my writings :))

    ReplyDelete

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My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!


What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)

Infections

Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.