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

Thursday, July 2, 2015

5 Years... Yes 5 Years ago Today

5 years ago Today, I became a hospital inpatient.
5 years ago Today, I began part 3 of intensive chemo to save my life.
5 years ago Today, my address changed for a month.
5 years ago Today, I began the journey to hoped-for Remission.
5 years ago Today, I was brave and excited to begin my Autologous Stem Cell Transplant process.

My July 2010 home

5 years later- Today,  I am not brave, not excited about my treatments and not looking forward to what lies ahead for me (treatment side effects that is), as I am much wiser, more aware, more realistic, more scared and have been there, done that. I have HAD remission and LOST remission. I've "battled" Myeloma cancer for 5 years now. Yes, battled... it's been a battle. Me against the myeloma invasion.
Yes, I am VERY grateful for these 5 years... but honestly, cancer, cancer treatments, cancer side effects suck! Having an incurable cancer makes me a lifer at this, giving me a life-time sentence. I don't get a break, I won't ever "get back to "normal", or ever have my life back as I knew it before cancer... living with cancer and cancer treatments are my "new normal", forever and ever until lights out.

5 years ago Today, I was admitted to the hospital, and hooked up to an IV stand (that was to become my lifeline for a month- I named my IV "tower" Rex Rx). Ironically, I didn't look very sick (exclaimed the staff) at admission, and still had half my hair!
5 years ago Today, my life became limited to a hospital room, a bed, a bathroom and luckily a pretty big window with a view.
5 years ago Today my family brought me there and left me in that room... when they walked away... I cried... my life wasn't supposed to be like this. They need me, I need them, I can't be here... this must be a mistake. The seriousness of my situation hit me then. I'm a sickie and I need some pretty serious medical treatment. It's not supposed to be like this! Wait... what? Nooooooo.... it's summer... it's vacation time, I'm supposed to be having fun... outside... someone made a mistake... come back...

A room with a view. I had real estate on floor 6 then 5

I know I write this all the time... how surreal and unreal this whole cancer experience is. Truly I still cannot wrap my challenged brain (what's left of it) around the fact I was diagnosed with cancer, then intensely chemo'd for cancer, then hospitalized to further pummel cancer. I have continued on chemo, etc for 5 years now. I write about my experiences, I talk about my experiences, I live my experiences, I reflect on my experiences, but honestly, it STILL feels like an out of body experience... even when I'm feeling really sick, I still just feel really really sick, really really yucky, but I cannot wrap my head around this.

So Today, June 2, 2015 I tried to be normal, as I reminisced about where I was 5 years ago Today.
I got up... never early any more (as I'm always in the bathroom until late at night...)
I hydrated, then had a little coffee with a cinnamon stick (whoo hoo, big thrill!)
I did some animal chores around the house, logged in and helped a variety of students online, hydrated some more, talked with my (adult) kids, chatted with Jim, petted my animals, and then readied myself for work. I "recover" enough from my weekend steroid dose and crash to go into my office latter week.. well sometimes... but always later in the day... hoping the volcano has calmed... and I NEVER eat before I leave the house... NEVER!!!
Today, I tried to "act" normal... albeit my "new normal" in honor of where I was 5 years ago Today.

5 years ago Today, my life was dangling on a precipice, I was preparing for falling off a cliff I could not anticipate or know; prepping for a near death experience I knew not of...
5 years ago Today, my body was being readied for chemo cellular annihilation (hello chemical warfare Melphalan). 2 days of high-dose chemo to kill just about everything. They warn of the delayed reaction, it doesn't hit at first, or all at once. But when it does, IT DOES!
 
5 years later- Today, I tried to be "normal". It worked for a little bit. I had a wonderful afternoon in my office seeing students and colleagues, later even suggesting to Jim we meet for dinner (since of course I hadn't eaten all day and I actually had an appetite...  but of course, later... it "back fired" bad, really bad, really really bad.. ugh!).

For a few hours today, I felt a bit normal. When I came home I went outside, inhaling deeply the fresh moonlight, as I visited my doggies and horses and pretended to be normal, scratching their itchy spots, petting their silky summer coats, and breathing in my favorite scent of warm horse and summer hay, hearing the "hoo hoot" of a barn owl calling out in the moonlight.

My love, Boots silhouetted in the sunset and moonrise

5 years ago Today, I was inside a hospital fighting for my life.
But tonight I felt so alive! The horses and I, bathed in the warm shimmery moonlight, this giant July moon shinning like a huge flashlight from the heavens, surrounding us, embracing us with summer, with life, with hope, with peace. I breathed in deeply, exhaling cancer out and smiling contentedly, for this moment, for this gift tonight.

Hello beautiful moon!

5 years ago Today, I couldn't do that... and I cried then... because my life was forever changed
5 years ago Today, I feared what was to come. I was so scared of the unknown
5 years ago Today, I lost my freedom... for a month... for a lifetime
5 years ago Today, I couldn't breathe in the moonlight, shinning on silky manes and tails, or hear the the deep "hoo hoots" of the wild barn owls
5 years ago Today, I did not own my life... cancer and chemicals owned me... and they still own me

5 years ago Today June 2, 2010, I was admitted to City of Hope Hospital to begin the Autologous Stem Cell Transplant process, of which I really knew not what was in store for me...


Thank you sweet Kathy for sending me this unbelievably apropos picture today!
Your artwork, inner beauty and inspirational spirit inspires me!
I love our girlfrienship :)


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

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6 comments:

  1. Pam ThelleJuly 04, 2015

    Wow... Just found out this week that my mom has MM. To say we are beside ourselves is an understatement! I've talked more about cancer in these last few days than I have talked about it in my entire life. Where to begin, What to do, Where should she receive her treatment... My mom tends to do whatever the dr tells her. I want to research, research, and research. We have to get this right. Could I FB message you or talk to you directly? Pam Thelle - Louisville, KY

    ReplyDelete
    Replies
    1. JulieJuly 05, 2015

      Hi Pam, thanks for reading my blog and commenting! I never know who's out there following my ramblings, and I appreciating you letting me know you stumbled upon my blog! I am so very sorry to hear of your mother's Dx. Yes, it is shocking, surprising, numbing, overwhelming, and raises millions of questions. Hang in there, as there's tons of information out there. Hopefully she was Dx early and will be in treatment immediately. Yes, you are welcome to email me at Missy.Myeloma9@gmail.com and here are some great Myeloma websites to get you started:
      International Myeloma Foundation (IMF)
      MMResearchFoundation (MMRF)
      Myeloma Beacon
      Myeloma Crowd
      Pat's Multiple Myeloma Blog
      Google in Myeloma treatment Centers, not just general cancer centers
      Please let me know how you Mom's MM was Dx, and what kind of MM she has. I am IgA. My Dx story is below.
      Find a support group too!
      And google in Myeloma blogs, as you will learn so much from other MM patients.
      Best of luck Pam, and hang in there. My heart is with you, Mom and your family. xoxo

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  2. LindaJuly 07, 2015

    Wow Julie, lots to look back on from five years ago! Of course for us, we wondered if EZ would still be with us 3 years down the road, let alone 5, and for that we are grateful. MM is a fierce opponent and each treatment is different as each individual is different. It's so much to take in. I'm glad you had a beautiful evening on your ranch refuge, under the huge July moon, and hope it invigorated you. Try to stay positive, that there will be great advances in MM treatment that you could benefit from as FDA approval comes. Oh how I wish the GI issues weren't so severe for you. Thank you for blogging, I'm sure many can relate to your story. If we ever make it to the west coast, I WILL look you up for a cup of coffee with cinnamon stick!

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  3. AnonymousJuly 09, 2015

    Julie,
    I continue to pray for you daily. You are an amazing writer and inspire me each time I read your blog and FB posts.
    I appreciate all the guidance that you gave when I was a student at COC. What a Blessing that you were able to go into your office and see students and your colleagues!
    Love and Miss You!
    Roxanne Jennerson

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    Replies
    1. JulieAugust 01, 2015

      Awww thank you so very much Roxanne for your sweet words of support and appreciation! I love our long time friendship and love that we still occasionally see each other, and we have been able to watch our kids grow up!!! You are an amazing person that I have been blessed to have in my life!!! Love you like a little sister xoxo Thank you Roxanne <3 xoxo

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  4. AnonymousAugust 01, 2015

    Your life is truly amazing, and not normal at all. All of us that scream because something didn't go quite right today should read, reread, and then reread your blog again. For your normal life is to stay alive and have the best quality day you can. For the rest of us, our days are quite different. We worry about ridiculous things by comparison. With all my heart I truly wish you had one of "our normal days." Worry free. Eat what you want with no real consequences. That's what I want for you.

    What I REALLY WANT is for you to attend Matt's wedding for the weekend, and then perhaps spend the night and do something crazy like the wild animal park or Whatever! That would be a wonderful, but I grant you not very normal weekend for you. Like I said, I want you to just forget about it for a short time, get off the meds and stay out of the bathroom, and simply do what you want to do.

    I liked your blog, (but I wouldn't have looked for it until tomorrow). A battle for FIVE years and won, but at great cost. I wish I could somehow say the magic words, or feel the magic words, or SHOUT OUT the magic words so that someone would hear my request. I want you to have a "normal" few days at least and have no worries like the rest of us. Why is that not possible? I'm frustrated beyond words. I really am.

    Well, thanks for listening to me. It makes me feel better to express how I feel with your situation. I hope that someday soon they find help for you. Miracles happen all the time. Why not the miracle you need? Why not?????

    Feel well, and happy.
    Love,
    Susan

    ReplyDelete

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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.