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 goal oriented, studious, career focused, super family devoted, and 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 at and with my 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, 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 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!! We all ponder 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 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  :)

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

Friday, April 4, 2014

Climbing the Revlimid ladder: Hello 10mg and Beyond

Ok, Ok, I surrender! I accept I don't have magical Myeloma "curative" powers. I accept cancer is stronger than me, and I have to step up my battle. Silly me, I really thought I could just low dose pummel Myeloma back into Remission submission with minimal chemo dosages. HA! I'm mortal after all.

Inspiration from my sweet, talented friend Kathy!
Thursday I met with my City of Hope SCT oncologist Dr Spielberger (who is Director of the BMT/SCT Department). We agreed to step up Rev from 5mg to 10m to 15mg... onwards and upwards if necessary. He's thinking my system is different now, and I won't have the crazy allergic reax I did in 2010. Ok, I'm feeling brave. Be scared dysfunctional Myeloma contaminated plasma cells, here comes more Rev!!

Ten it is!
Ten after the 10th of April
Ten is Tenable!
Ten is no longer Tentative!

Then today, I met with my wonderful primary hematologist-oncologist Dr Lee, and she agrees with the plan. She fully understands my "go slow" perspective, and agrees with moving on to 10mg, then seeing how my numbers are (as I have monthly blood tests and monthly meetings with her).
We talked about how well I did with 10mg in 2010. How 10mg brought me from 67% cancerous Myeloma status, down to 10% cancer, prior to my Autologous Stem Cell Transplant, which then brought me to full Remission (CR) status August 2010. Ha! that's a lot of Ten's! (10mg in 2010 which = 10%)! Ten must be my magic number, right?!
I've been VERY lucky to never have had any "bone involvement", and all my skeletal scans have been NORMAL. Not to mention, my current CBC's don't look too bad either. I'm still sub-normal on Whites, but most of my CBC's are at the low end of Normal. Shocking after being such a sickie for Feb and March! Guess all the Gerber baby food Jim buys for me is keeping me healthy :)

Here's my Immunoglobulin status as of April blood tests:
IgG = 309 (normal range = 700 -1600)
IgA = 1390 (normal range = 70 - 400) I was 5700+ + at diagnosis!
IgM = 16 (normal range = 40 - 230)

M-Protein, Serum = .99 (Remission = Zero: 0.0)

More inspiration from creative and talented Kathy!
Ok Revlimid, let your 10mg Tenacious Tentacles tackle Myeloma into oblivion! I am no longer Tentative about moving to Ten mg :) Big deal right? And embarrassing, as most of you Myeloma warriors out there started on 25mg, and here I've been whining about moving beyond 5mg. Yeah, I'm a medication whimp!

Goodbye 5mg Rev! Just took my last pill of you with "Tenacious" Purple Cowboy:

Seriously great red wine (right Kerry and Henry!)
I'm just teasing!! water, herb tea and chemo for me.

So get to work Rev 10 and Dex!!! Get 'er done my ol stand-by Revlimid, so I don't have to try Velcade, Kyprolis, Pomalyst, Doxil, etc, and worry about new side effects... sorry, I'm a scaredy-cat and HATE feeling sick!!!

Hoping 10mg gets me well enough to continue my counseling Tenure, and I make it to our new offices Dec 2014 or Jan 2015?

 Thanks Connie for taking this great picture of me being silly!

I think I've Tendered enough 10 references forever, right?! 
Thank you so very much for following, reading, commenting on and tolerating my goofy posts.  Your visible and invisible support cheers me on!

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

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
.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?”)


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.