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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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.