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

Friday, April 25, 2014

Potato Chips, Dark Chocolate, Spinach and future Rebellion!

Beware... Today is DEX STEROID day... aka ROID RAGE day so this post "rages" on and on and on... lol!


As I down more pills and meds today than I have fingers, I can't help thinking... and thinking and thinking (as I always do) ... WHY do I have incurable cancer? WHAT did I do to cause this? WHY me? I want the remainder of my life to be long, fun, fulfilling and silly! I'm too young to be thinking about how much time I have left, when I'm going to get all my rides in, and when my demise will actually arrive...

Over and over I have pondered the impact of stress and stressors. I do believe stress has a HUGE impact on our Bio-Physiology... changing, damaging, altering our inner chemistry and genetic profile, creating a ripe host for cellular mutations, aka stupid cancer. Most everyone I know who has been diagnosed with cancer (minus very young children), SIGNIFICANT stress has been a factor in their lives. (Those that know me well, know "the stressor" that stressed me out most of my life! But that's for an entirely different blog topic haha!)
  
And perhaps there IS an immune system connection with my life long hypothyroidism, allergies (food and environmental) and a short bout with asthma, and that crazy benign neuroma tumor (located in my lower neck/clavicle area)  I had removed back in 1998? I'll have to look for research and studies related to those. Thanks though to extensive and continuing chemo, my 2010 ASCT, allergies are mostly completely non-existent, and haven't had any asthma since our cute pet rats passed on 15+ years ago. Yeah for chemo! Guess me and chemicals do get along well!!!

So what really is this blog musing about lol... reflecting on some pretty funny conversations the other day with my hilarious, rebellious colleagues. These blunt, boisterous conversations (so raw and authentic) are so amusing and thought-provoking to me, causing me to reflect on my lifelong personality perspective of: "Of course I will be SomeOne"! I've always been so goal oriented, studious, career focused, super family devoted, have a people-pleaser personality, and not to mention, always wanting a "drama-free" zone around me! (Although there many that would take exception to this, as I am not one to keep my opinions to my self!)

I laugh, and marvel at you, my tell it as it "frikn is" colleagues (and you know who you are!), who so straight out, unabashedly share how you previously and currently live your life, so much more on the wild side then me! I reflect on my relentless quest for perfection, albeit, imperfect as perfection is. I contemplate my life's journey of personal achievement, to career success- which thank you very much Myeloma- for promptly reducing me to minimalist functionality, where I'm now just a mere fraction of a fraction, of my former self! F you Myeloma!

I laugh with them, at their spontaneous "WTF" life's philosophy, emphasizing and sprinkling their points with expletives!  I'm humored at their wild and raucous experiences that I never had... I was always so dang cautious, conscientious, and consequence oriented. No booze, No drugs, No smoking, No wild partying, etc. Responsibility my middle name ! "What the F Jules!", she said. So I tossed caution aside (whoo-hoo!) and had a bag of potato chips and chocolate with them, and suffered later lol.

Make no mistake Myeloma, I've had a wonderful life, full of joy, laughs, success and irreplaceable events and memories! Thanks to my caring parents, amazing husband, fantastic kids, extended family and great friends and colleagues, there is not too much I would change... No I'm not without flaws, and yes I've done some dumb things, but tame and sane overall. But what if I had lived a bit more recklessly??? Would that have changed my "predisposition" to Myeloma? What's up with all the drunks, druggies, chain smokers, fast food junkies that live long lives and pass on, still behaving badly? F u Myeloma... where'd my clean living get me? (ok, I have outlived my "high risk" stats, due in part to what little "good health" I had at diagnosis)


As our kids were growing up- Respect, Rules, Boundaries, being Mentally and Physically smart and making the "right" choice, was the core and foundation of our lives. As they moved into adulthood, college years, early 20's and beyond, our daily mantra was "Action... and Consequences", "look deeply before you leap", "never forget the potential outcome of your choices"!!! Well they're REALLY amazing adults now, and we have few regrets about our parenting (except we were too good, too nice lol). As they got older, we relaxed a bit, and laughed: "if you wind up in jail... make us your first phone call, but don't count on us to bail your A$$ out!" Harsh words we never had to test out, thank goodness!!! We all pondered now what, if anything, they would do differently, and they too, think about being just a bit more "badly behaved" (especially Scott the cancer survivor). Alissa hasn't stopped playing yet! I was always so entertained when their friends would share their wild experiences with me: me thinking, wow, how stupid of you... but oh so fun your adventures are!!! Think Havasu... and you know the stories!



So this brings me to being a tad pissed off for most always doing the right thing and still being diagnosed with deadly incurable Myeloma !
I basically lived and ate really healthy
Tried to get a section of the entire food pyramid in, almost every other day
Always trying to be a "healthy anorexic" (eating well and watching my weight) 
I didn't drink alcohol, ever do drugs, or smoke
I drank herb tea, half-caff coffee, watered down juices, and never cared for soda
Few fatty foods and of course, no fast food/junk food, very little animal products
Earlier on I didn't drink a ton of water though... maybe that's it!!! 
Perhaps it was my busy, busy, busy life with never enough sleep, committing to too much, being the ever present, "mom-counselor" to all...
Perhaps my "mid-life" braces, all those dental xrays, and not really eating right for those years, contributed to hosting myeloma?... as I found it challenging to eat with a mouthfull of irregular, sharp metal clanking together. To be honest, looking back at the years preceding my diagnosis, I really didn't eat as well as I imagined I did... dumb me! - why didn't I know of Ensure and nutritional drinks then!!!
Perhaps it was also the years of stress (good stress, bad stress, all kinds of keep it together stress), but lots of stress none the less, that eventually flicked the cancer switch?

Who the heck knows! ... I'll never know why Myeloma chose me, or why I created a body chemistry that invited Myeloma in, and gave Myeloma the welcome mat into my life
Perhaps I should have indulged more, not tried to be "so good" all the time
Perhaps I should have cared less about all the things I cared so much about
Perhaps my quest for the best, should have been more of the "less is more" philosophy I so often espoused

Oh well....
Cheers to a banana, cream of broccoli soup, sauteed fresh spinach for lunch today... and like a good girl, I took my morning and evening meds with a delicious vanilla Ensure.
I made us Breakfast for Dinner tonight, after I did 6500+ steps (thank you FitBit) around the barn to burn off some Roid Rage Energy. I made Jim a Hawaiian special: Spam and scrambled eggs, sauteed with spinach and hot sauce. Me, a tamer version minus the Spam, but with added spinach, avocado, and yes... hot sauce! Dex steroids make me (temporarily) "crave" spicy!

I splurged on dark chocolate today, petted my horses and scooped some poop. I breathed in deeply, including dusty manure residue, and inhaled sweet horse breath kisses. Take that stupid Myeloma!


So what's my point...
I think I'll take a few "wild detours" on my next journey and cuss a bit more too! And wear cowgirl boots more often! And take more rides on the "no stress express"!

PS- Revlimid 10mg is going well. No allergic reax so far. Tired, achy, etc, but okie dokie... blood tests and monthly oncology appointment next week. Not sure what I was worried about lol! Bring on the 15mg if necessary.
See you in May my loyal listeners, lurkers, and followers  :)

4 comments:

  1. Julie,
    Sounds like your having the Roid rage my brother had. He would take his Dex and be up for 2-3 days.....playing the market, short trading, calling up old friends etc. giving my sister in law hell. The Dex generally made him feel better..... as an aside his Dr. at UAMS told him...... Eat any damn thing you want and as much of it as you want! And he did!
    Take care and enjoy the energy days.
    Keith

    ReplyDelete
    Replies
    1. Thanks for your spot-on comment Keith. Day 1-2 of Roids I do feel better, have more energy and an appetite too... and then I crash for days after..ugh! Food is unappealing, and I have an overall achy, sick feeling. By the time I bounce back, it's Roids again lol. Love the advice for your brother from his UAMS Doc! how long did he have to deal with MM? So sorry for your family losses Keith. Hope you are well!

      Delete
    2. Julie,Glad you can have down days.You have been so up and
      so perfect all the time.Keep fighting-you will win!!

      Delete
    3. Thanks Ron for all your support!

      Delete

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 Alissa 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 team, Dr Lee and Nurse Jalee at Kaiser PC, and Dr Spielberger and Dr Kogut at Sunset Kaiser/City of Hope hospital.
I began to formulate a new reality and accept my "New Normal".
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 remarkably 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!

And now... the 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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint!) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!!
.81 Aspirin to prevent DVT, Revlimid complications

June 2010:
High dose IV Cytoxan
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
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 the Heck is Multiple Myeloma?!

Multiple myeloma is a cancer of your plasma cells, a type of white blood cell present in your bone marrow. Plasma cells normally make proteins called antibodies to help you fight infections.
In multiple myeloma, a group of abnormal plasma cells (myeloma cells) multiplies, raising the number of plasma cells to a higher than normal level. Since these cells normally make proteins, the level of abnormal proteins in your blood also may go up. Health problems caused by multiple myeloma can affect your bones, immune system, kidneys and red blood cell count. Although the exact cause isn't known, doctors do know that multiple myeloma begins with one abnormal plasma cell in your bone marrow — the soft, blood-producing tissue that fills in the center of most of your bones. This abnormal cell then starts to multiply. Because abnormal cells don't mature and then die as normal cells do, they accumulate, eventually overwhelming the production of healthy cells. In healthy bone marrow, less than 5 percent of the cells are plasma cells. But in people with multiple myeloma, more than 10 percent of the cells may be plasma cells. Because myeloma cells may circulate in low numbers in your blood, they can populate bone marrow in other parts of your body, even far from where they began. That's why the disease is called multiple myeloma. Uncontrolled plasma cell growth can damage bones and surrounding tissue. It can also interfere with your immune system's ability to fight infections by inhibiting your body's production of normal antibodies. Researchers are studying the DNA of plasma cells to try to understand what changes occur that cause these cells to become cancer cells. Though they haven't yet discovered the cause of these changes, they have found that almost all people with multiple myeloma have genetic abnormalities in their plasma cells that probably contributed to the cancer. For example, many myeloma cells are missing all or part of one chromosome — chromosome 13. Cells with a missing or defective chromosome 13 tend to be more aggressive and harder to treat than are cells with a normal chromosome 13. ~ From the Mayo Clinic