Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Friday, August 2, 2013

August status check... not the status quo

And so...
I had
an Oncology appointment
today...

A week prior, I casually took my "routine" blood tests
Confident in my continuing winning remission status.
Confident... since I had graduated to every-other-month-status-checks!
Confident, as that's a big dominating-myeloma-milestone.
So confident with my remission, I committed to growing my hair out-
No short chemo hair for me any more, I told myself!

The week moved forward, without too much cancer "status"-dwelling
Life is so busy, other complications complicating my complicated life
Complicated people and things complicating my already complicated life.

Scott had his own recurrence scare!
Was quickly scheduled for a Cytoscopy on Wednesday,
And is thankfully just FINE!
Just a scare! 

Seriously, Kaiser online is so awesome...
Give blood "Stat"
Then boom!
"Good news" NORMAL test results are viewable online
"Bad news" ABNORMAL results, are not viewable.
I know, that which I can see online is not what is worrisome...
It's what I cannot see that tells the story
And I know enough to know, what I don't see, is concerning.

So my week of wondering
what story my blood would tell
was over today
and I found out more than I expected
more than I was prepared to hear....

I learned I am not invincible
I learned I still have a faster ticking clock than I actually believed
I learned I need to do what I want to do
NOW!
I learned now is the time for moonlit horseback rides
Now is the time for going where I was planning to go
Now is the time to be and do with those I love
No more waiting 
Now needs to really be real, very real
No more just mouthing the words

No more postponing
No more thinking I have an infinite amount of tomorrows
No more smug thinking that I'm different
That I have my pre-cancer life back
That I beat the Myeloma odds
That I get Remission for a long long long time
That I have plenty of time to make THAT list
and actually DO that list...

I learned
Now I must do THE list!

I asked my wonderful oncologist pointed questions-
I heard I don't have the (forever) time I naively thought I did
I kind of knew, but today I actually asked how finite my timeline realistically might be
I asked if I we should go to Hawaii now, or can it wait
I learned I shouldn't wait... go soon... go now... don't wait, do whatever NOW
I learned that statistics don't lie

I learned that I really am out of remission
That my June tests didn't lie
That my August levels are even higher
Double, the high end of normal levels, high
Myeloma has officially actively returned
Almost 3 years to the day
I left City of Hope hospital
Myeloma has returned
1 year to the month, since I have been off chemo
Myeloma has returned, recurred, reoccurred, re-invaded my bubble

I learned my IgA myeloma levels are moving up fast
June was slightly abnormal
August is now officially very abnormal
And I have the dreaded "M-protein spike"

Goodbye pseudo health
Goodbye remission since Stem Cell Transplant 2010
Goodbye one year free of chemo
Goodbye head immersed in the sand, cocky overconfidence

Hello soon, to life saving treatments... again
Coming way too soon...

Hello to the ultimate body betrayal
I just don't get it...
I was Julie the Invincible!
Am I "allowed" to ask... why me?

Next full moon
look up
picture me
outside hugging my horses
my tiny tears of reality streaming down their manes
as I ride like I've never ridden before...
Hoping, that all this must be wrong!
That perhaps, someone will say... "just kidding", you're fine, we made a mistake!

This amazing video represents my all time riding dream
that now, honestly... is just a dream
Thank you Stacy 
for this breathtaking ride!



Stacy Westfall stunned her audience competing bareback and bridleless,
(to  "Live Like You Were Dying" by Tim McGraw)
in tribute to her dad, who had just passed away
(2006 Freestyle Reining, All American Quarter Horse Congress)


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

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17 comments:

  1. ronAugust 03, 2013

    Thanks for sharing Julie and least you can be thankful for Scotts good news.If there ever is
    a person who shows class in bad news it is you.
    Still believe in miracles and will believe and
    pray that way.You right though life is for living now and will think of you on your horse
    on moonlit nights.Have a great time riding and
    in Hawaii.
    Ron

    ReplyDelete
    Replies
    1. JulieAugust 19, 2013

      Thank you for your caring comments and continuing support and Ron!

      Delete
  2. KristyAugust 03, 2013

    Always praying for you Julie. xoxo

    ReplyDelete
  3. Carole LeighAugust 03, 2013

    Julie,
    I am so sorry that you are dealing with relapse. After a long remission, it is hard to wrap your brain around that you have to start thinking about treatment. You have a powerful spirit and that makes you strong and a formidable foe for MM. Know that I will praying for you.....
    Love and many hugs,
    Carole Leigh

    ReplyDelete
    Replies
    1. JulieAugust 19, 2013

      Thank you so much for your continuing support and comments Carole! I wish you the best too, with your myeloma battle!

      Delete
  4. AnonymousAugust 05, 2013

    Julie,
    I am always praying for you and your family. I am so sorry you are going through this. Wish there was something I could do for you.
    Love and hugs to you.
    Leslie xo

    ReplyDelete
    Replies
    1. JulieAugust 19, 2013

      Thank you for always following my blog Leslie and for your continuing comments and support!

      Delete
  5. AnonymousAugust 06, 2013

    Jules,
    Can't even begin to express my feelings about this. You know this month is shit for me every year and now hearing this...well it just got even f*cking shittier. It's hard to even wrap my brain around all that you said above and I can't really break it down how I'm feeling. I'm crying for a few reasons and now this is one of them and all I can say is the obvious: you are one tough bad ass chick that has beat this thing once and will beat it again! You need to start doing whatever you want to do NOW and F everything else. Work, drama, bullshit, all that CRAP can now be put on the back burner so that you can do every single friggin thing that you enjoy and with the ones that you love so dearly. When you ride your horse in the moonlight, I wanna be there. When you want to get a tattoo, I wanna be there. When you want to run around the street naked screaming at the top of your lungs, I'll do it with you. Know that you are a STRONG and AMAZING human being and will come back from this. You have all the love and support from those hundreds of lives you've touched and have made a difference in to keep you going strong! I love you so much Jules!

    ReplyDelete
    Replies
    1. JulieAugust 19, 2013

      Thank you so much for all your support and laughs Kristin! You make me laugh all the time!! <3

      Delete
  6. AnonymousAugust 11, 2013

    Such a valuable lesson that though none of us are invincible, we can choose to be resilient. Julie the brave...You teach us all so much about the power of hope and strength and LOVE. Your journey inspires and touches me to the core and I learn from you in ways you can never imagine. I wish you well on phase II of your life-saving journey; you are a beacon of light to me and many others. The love you have given to SO many people, Julie, is returned to you ten-fold. May that love hold you in the warmest embrace as you power on! Love and light to you, Julie! Coming your way!Sally Swiatek

    ReplyDelete
    Replies
    1. JulieAugust 19, 2013

      Thank you Sally for your sweet and supportive words of support! I didn't know you were following my blog! Thank you!

      Delete
  7. AnonymousAugust 15, 2013

    Always praying for you Julie, ALWAYS. Each and every week you are on my prayer card and I think of you often. I wouldn't be an RN without you. Thinking of you & Praying for you. You're amazing. XOXO
    -Julie D.

    ReplyDelete
    Replies
    1. JulieAugust 19, 2013

      Thank you so much for your sweet words of support and prayers Julie! <3

      Delete
  8. JulieAugust 19, 2013

    Thank you all for your support, sweet comments and prayers! Sure means a lot to me! Thank you for reading my blog and sharing your thoughts and comments back to me. I never know who's reading my thoughts here in blogsville and I thank you for sincere and loving comments, and your prayers! <3

    ReplyDelete
  9. LindaSeptember 15, 2013

    So sorry Julie for being so late in reading this post! It was a week before our move and my computer was not in use at all. As you know, your journey has been so very similar to EZ's (as far as your timeline goes for diagnosis and SCT) and this scares me for sure! However, I always hold out hope for new drugs to knock the MM back off it's feet until they find a cure for this stinking cancer! You are healthy, strong and determined and I'm sure it will help in getting the disease under control once again. Please KNOW that EZ and I have you in our prayers, and more importantly, God has you under His wing.

    ReplyDelete
    Replies
    1. JulieNovember 23, 2013

      Thank you Linda for always reading and commenting on my blog! You are a wonderful long distance blog-o-sphere girlfriend! Hoping all is great with you and your beautiful family and of course my MM buddy EZ!!!

      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.