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Wednesday, December 30, 2015

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

Hello 12.30.2015
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.
I'm still stunned about my Myeloma diagnosis and I still write these blog posts as if I am writing about someone else's life. Honestly, I still cannot believe I have cancer, and I still cannot believe everything I have been through medically, and I still cannot believe how much my life has changed, yet still stayed the same since 12.30.2009

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
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!

October 2010
December 2015

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


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4 comments:

  1. AnonymousJanuary 05, 2016

    Julie, this is my favorite blog yet!! Your "Two Cents" had hit me deeply. FUCK.... So many memories of hearing many of these from you over the last 25 years.. Many of them I just shook my head and wasn't ready to listen. I AM LISTENING NOW ! Really listening now and it is life fucking changing for me. I am going to read this list everyday , even if its just 5 or 10 of them... I cry a lot when I really think about all you have had to go thru, get thru, deal with, and feel so helpless... I want to help.... Just like you are to soooooo many people, you inspire me, you make me laugh like crazy at your nut job questions/analyzing.. you remind me to just be human and vulnerable... So, I am taking from your list here, being real, being honest, being me... and thanking you for inspiring me, making me laugh and reminding me to HYDRATE!! I love you Julie and really looking forward to tomorrow's possible post. Madonna

    ReplyDelete
    Replies
    1. JulieJanuary 07, 2016

      Thank you Madonna! Love your comment! Love that my words make an impact! Wow 25 years I've been spewing this stuff at you ;) So happy my musings are making a difference in your life, and hopefully others. Thank you for letting me know! Now let's do this list! Love you!!! xoxo

      Delete
  2. LindaJanuary 17, 2016

    Cheers for 2016! I absolutely love your list of "What I know. What I learned. What I do!" So many nuggets there to remember and take to heart.

    ReplyDelete
    Replies
    1. JulieJanuary 27, 2016

      Aww thank you so much for reading and appreciating my writing Linda :) xoxo

      Delete

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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.