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

Sunday, November 6, 2016

Drinking Khemo Kool Aid forever!

Hello 11.6.16
Is it "Daylight Savings Time" for you? Not a fan here. I already miss the long days and multi-colored sunsets lingering long and late into warm summer evenings. I for one, would certainly vote DST away! 

So it's been a really busy last couple of weeks--- busy in an amazing, head spinning, I am so grateful to still be alive, thank you for appreciating my life's journey, kind of way!!

If someone years ago had described my current "bi-polar" lifestyle to me, I wouldn't have believed them. I would have laughed and told them they're crazy. Truly, every week is an unpredictable challenge, filled with medical and social extremities, deep life questions, challenges galore and ridiculous physical ups and downs. Every week is a crazy unpredictable, yet so predictable roller-coaster. By nature, I'm the no stress express, creating and desiring calm and predictability in my life and others' lives. Love love love fun times and mental challenges, but "bi-polar unpredictability"... no thank you, not my style! Never been an adrenaline rush junkie. I don't need heart-pounding entertainment, extreme excitement, extreme challenges or extreme physical unpredictability. But that's what life has dished out to me now, and I don't have a "choice"...


Extremities, no thank you! I'm not a jump out of planes, or off cliffs kind of girl. Galloping horses bareback through winding trails into the sunset, wind and manes whipping my face, was challenge and excitement enough for me. Rodeos, no thank you. Being a mom and career girl, challenge enough! I'm calm, analytical and pragmatic. Get it done. Accomplish. Move forward, my goal. I love fun and funny. Laughing and lightening the moment is me. Routine and predictability, with spontaneity tossed in, my style. I've never preferred extremities of any kind in my life, but that's my roller coaster medical life now.

No matter how many times I say it, no matter how many times I write it, no matter how many times I try to explain it to others, I just cannot believe the changes FORCED upon me. Yes, my life is incredibly WONDERFUL in so many ways, yet so AWFUL. My life is so BLESSED, yet so CURSED. My life is so rich with JOY, yet so CHALLENGED with unpredictable yuckiness.

It's the extremities in my life that have me laughing, crying and cussing. It's the so good, then the so bad that has me calling out for reprieve. On steroid days, I own the world. "I can do this!"permeates my thinking. I feel powerful, in control, hopeful, energized, positive and like me again. Then the crash creeps in and I feel tricked and so betrayed by my body. I don't wanna do this, I don't want to feel awful...again! I'm so tried of feeling like I have the GI flu every week. It's the extremities of side effects that are wearing me down. It's the constant "what if", what's going to happen, and when. I how will I feel. When will I crash. What will the crash be like. How awful will I feel. How long will I feel awful. How many times will I be running for the bathroom per day, for several days. Or not? I like being in control of my life and events, and that, has been stolen away from me.

YET...

I have so many AMAZING things going on in my life, that take my breath away! My few GOOD days are good! I have functional, somewhat "normal" feeling days a few times a week, after chemo and roids have passed through my system. I have days where I think I can "resume where I left off" prior to diagnosis Dec 2009. Although I have cancer, incurable cancer at that, I can feel strangely ok when propped up on high dose steroids, or after recovering from the evil chemo/steroid crash, right before the crazy-making cycle begins again. I have days where I think I can be the ol Julie again. But all days are still consumed in  complete disbelief!


As I've posted many times before, when I feel ok, I commit to doing things, going places, and engaging in life. Yet when I show up, I feel the necessity to preface conversations with a "movie-trailer" explanation why I appear so ok, while having terminal, incurable cancer. I shouldn't have to do this, but I feel the "need"  justify my ability to show up, apologizing for "how I look", and how "functional I am", in that particular moment. No one (except my immediate family), knows the back story to how I was able to show up, as put together as I appear. Few understand how sick I really am, and how "bad" my myeloma stats really are. I laugh, and say to those I meet up with, "Oh, if you only knew where I was, and what I was doing just this morning, or 24, 48, 72 hours ago". If you only knew my struggle to be here,... "Imodium and Pepto Bismal are my best friends", I wink.
Life isn't just show up and take part for me any more.
Life is: Can I even do this? How long can I do this? How will I feel? Can I eat? Should I eat before or during an event? Should I take that GI risk? And the ever explaining of why close contact, shaking hangs, hugging, breathing public air, is so incredibly DANGEROUS for me, and why just being in crowds could "kill" me.


So why this rant again...
I think my life and status confuses everyone that sees me publicly. From the chemo lab, to my colleagues, to friends and the general public. In my case, truly APPEARANCES ARE DECEIVING! I understand the confusion. How can I be so sick on the inside, and be so ok on the outside?
How?
It's just my nature to be engaging, positive, enthusiastic, candid, life of the party fun. It's just my nature to be ok. Because mentally, I am ok! It's cellularly, I'm not! And, honestly, no one but my family sees me on yucky days. No one but my family experiences my awful days. No one but my family knows where to find me, if they haven't seen me in while. No one but my family sees me looking and being sick and sickly. That's just who I am. If I can't feel ok, I stay home. If I feel gross and look gross, I stay home. It's just my nature to "pretty-up" and only put my best out there. If I can't do that, I stay home.

And so, here's the pictorial to go with the rant:
I have been so very fortunate to have been honored several times this year by my college and others. My 35 year counseling career has been a beautiful journey. I feel like the luckiest person on earth to have experienced all that I have professionally. I gave my life in service to others, and was gifted with incredibly enriching life experiences that made me a better person as I helped others become their better person. I've lived vicariously so many incredible human stories of ultimate challenge and success. I've been gifted with seeing hundreds, thousands, of student's dreams and goals come to fruition. I've been surrounded by incredible colleagues, with extraordinary skills and vision. I've been so very fortunate to have had the life I've had, prior to cancer bringing my career to a screeching halt.

Here's why I rant about my life. Here's why I am so very grateful. 
Here's why my "show up and shock" current life confuses so many :))

 Community award recognition for my counseling career!

Thank you so very much Bruce
for your nomination, support and heartfelt introduction!
 Thank you Bruce! Really, thank you from my heart!

 Thank you, thank you so very much Dr Dianne, 
for your support, nomination and years of collegial friendship!
LOVE that we both wore our horse scarves!!! :))

Couldn't be me, without them!

 My life!


              My student and fellow awardee, Taylor!
Thank you Susan!! for your continuous support
                                                                 and for "hating my numbers"! :))

**************** 
And the parties continue!
Happy 90 birthday Grandpa Hal!

Long ago, my dad unwrapped my tin of Almond Roca, 
and replacing the pretty gold foils with my dog Sam's poopies.
Payback is sweet!

 Guess what "gems" are in this specialty box of "chocolates" for my dad?!
Yep, caramel and sprinkle covered horse poopies!

Happy 90th birthday Grandpa Hal
*****************  
 And the events continue! 

Honoring Dr Dianne at her Zonta Recognition, and selfie moment with Dr Jeff 
 Such an amazing, visionary lady! I'm so grateful!

******************

 On a "good day" after the crash! Hello Islands burgers!

*************
 Surprise, Surprise
 I seem to always meet up with friends and colleagues 
at the chemo lab. Cancer can be so invisible...


I am so very thankful for everyone's support and encouragement, and I understand your dismay of my cancer status. I am truly humbled by everyone's "surprise" at "how good I look", and everyone's confusion that a terminal, incurable cancer patient on continuous chemo, with myeloma stats "5 times the HIGH end of normal", can appear so ok. Such a good "actress" I am, right?!

I am so very grateful my treatments "allow" me to function on the days I am functional.
I am so very grateful I am able to do the few things I still do.
I am so very grateful for the "keeping me alive success" of my chemo/steroid treatments, even though I am far far from well. I just hope I can stay on Kyprolis "Kool-Aid" for a while more and don't wind up "Refractory" to it, and then have to switch again to another treatment, even though that is inevitable. It's just nice to be able to "predict" my "unpredictable" side effects.
Go Khemo "Kool-aid"! May my veins successfully drink you up forever!

Ok, this post wound up way too long, LOL, but don't I always say that :))
Ps- did I mention my colleagues started a student Scholarship in my name. Whew! I am just so joyfully overwhelmed and humbled at everyone's support and appreciation!
Thank you, Thank you, my heart is full of gratitude! <3 nbsp="" p="">
Enjoy these interesting articles:


https://themighty.com/2016/08/why-i-wont-apologize-for-having-fun-while-sick/

http://www.cancertherapyadvisor.com/multiple-myeloma/multiple-myeloma-quality-life-more-important-feature-treatment/article/547105/

https://themighty.com/2016/08/what-its-like-wearing-a-surgical-mask-in-public/

http://www.cancertherapyadvisor.com/multiple-myeloma/multiple-myeloma-treatment-regimens/article/218209/

http://www.myelomacrowd.org/myeloma-101-dex/

https://themighty.com/2016/08/what-i-didnt-know-would-happen-when-i-became-chronically-ill/

http://www.myelomacrowd.org/the-fickleness-and-unpredictability-of-multiple-myeloma/


http://www.myelomacrowd.org/myeloma-101-more-on-protease-inhibitors-velcade-kyprolis-ninlaro-how-they-help-combat-myeloma/

http://www.myelomacrowd.org/phase-3-studies-show-kyprolis-carfilzomib-extends-progression-free-survival-relapsedrefractory-myeloma/

https://www.facebook.com/ChronicIllnessOnThemighty/





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


6 comments:

  1. I MADE YOUR BLOG! Honored to be among such distinguished friends, colleagues, and of course your wonderful family. What an incredible night that was to be sure! So proud of you and your amazing accomplishments. And yes.... one of your nonbelievers. Your blog is a gut wrenching statement of truth. But it IS very hard to believe how sick you really are. You look fabulous. You sound amazing. You still continue to help and inspire so so many people. Your numbers are still not the best...to say the least...AND I DO HATE THOSE NUMBERS! But in spite of those crazy numbers you smile through it all. All put together, it is still very hard to believe that you are so ill. Hard to believe that only a few hours ago..... your world was not the same as when I saw you. Hard to believe all the prep work and planning that goes into an evening like we had. Or a simple gathering at the tea room. Or the planning it took to attend my son's wedding! And yet that is truly the reality that none of us behind the blog that are not in your situation, really do get it, even though we read the blog and really do try to understand your world.

    You inspire all of us readers as we wait for a "six" opportunity to see what has happened since the last time you wrote, (unless you sneak one in when we least expect it). We all hope that the numbers are better. That the quality time is better. And you don't disappoint us.
    You have SO MANY AMAZING EXPERIENCES to tell us about...and then you sneak in the fact that you have not been feeling the best. And we try to believe. BUT it isn't easy. Your pictures are stunning. Your smile is infectious. And we don't quite understand your world.

    Stay strong my friend. Love you so much. I look forward to seeing you real soon. Feel well.

    Susan

    ReplyDelete
    Replies
    1. Thank you Susan for always being my "cheerleader" and supporter and "hater" of my numbers! xoxo

      Delete
  2. Julie
    congratulations on all your awards!I am so glad you
    can feel good enough to fully appreciate them.Also
    glad you can be happy helping others on treatment days.
    Tell you Dad Happy Birthday.Truly a great accomplishment for a man of the Greatest Generation.
    Ron

    ReplyDelete
    Replies
    1. Thank you Ron for always checking in on my status. Yes, MM is so invisible. The story I write all the time... Ok on the outside, challenged on the inside! Yes, reaching 90 is a big deal :) I will tell my dad, Thank You!

      Delete
  3. Valuable information in your blog and I really appreciate your work and keep it up dude I really very informative blog about the stem cells course.
    stem cells course

    ReplyDelete

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 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
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.