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Saturday, April 14, 2018

Caution... Not a Happy Post... Thank You Life Stealing Myeloma

4.14.18

My throat has been on fire for days. My head hurts. My skin hurts. My eyes burn and mist. My back is still seized from the PET CT Scan. My nose has gross congestion. I've gone through uncountable big boxes of kleenex. My face hurts from all of this. I know the evil cough is coming... I'm miserable physically and mentally. I feel so fragile...

It's a BEAUTIFUL warm, clear Spring day outside... blue sky, new green leaves on the trees, roses wanting to bloom, flies and bees beginning to buzz, happy doggies wanting to play, hens clucking they've laid an egg, my horses content just eating hay, not a care in the world...  I am so very grateful for ALL the good things in my life we've worked so hard for, and for all the other "advantages" I have in my life... But... always a But... I am so frustrated, so sad, so angry, so on the verge of weepy, for how Myeloma has completely stolen my life. Stolen my body, stolen my independence, stolen my spontaneity, stolen my options, stolen my immune system..., stolen my life as I once knew it.

What you wonder... has happened to the funny, optimistic, fighting Julie spirit?

What happened was I tried to live life, tried to have fun, tried to take a risk being just a bit normal, and I got completely sabotaged. Completely ambushed and laughed at by those cruel Myeloma cells circulating 24 7 within me, saying, "oh No you don't Julie", "hahahahha, we own you!" "Who do you think you are going out to a cootie contaminated public place to celebrate your daughter's 30th birthday". Ha Ha Ha! myeloma laughs at me... "Oh no you don't, Ms Immune Compromised, Neutropenic Cancer Patient, you're not "allowed" to get a PET Scan on Thursday, a birthday pedicure with my Birthday daughter on Friday, then go to a crowded, germ infested country line dance club Saturday night, then go to Sunday brunch the next day!" Hahahhaaaa, myeloma laughs at me. "Oh No you don't Cancer Patient Julie!" Nope, nope, nope, Julie", Myeloma snickers at me, "You're not NORMAL, and you will NEVER be again!, Myeloma laughs. Ha Ha Ha you incurable cancer patient Julie, with WBCs at 2.0 and ANC at .81, on Zarxio Neupogen shots!" What The Heck Were YOU Thinking!!! Ha Ha Ha Julie, you really thought you could step out and have a bit of fun AND NOT GET SICK!"... hahahahahahahhaaaaa, Myeloma laughs at me, jabs me, tweeks my back, sends daggers thru my nasal cavity, lights my throat on fire for days, and completely depletes me, stealing my soul, my optimism, my hope, my thoughts that maybe, just maybe, 2018 might be a year for a bit fun... Nope! No break from my ravages!", Myeloma laughs...

I just want to cry. Frustration tears. Disbelief tears. Sad tears. I constantly shake my head in disbelief. HOW DID THIS HAPPEN. WHY DID THIS HAPPEN. WHY ME. HOW COME. I remind Myeloma I gave my life to my family, to rescuing animals and humans. Giving my life to helping students become their best, finding their dreams, realizing their goals. I gave, and gave, and gave, thinking that when I retired, I'd be free to do all the things I wanted to do. I never had huge retirement goals. I've never had "materialistic" goals. I just wanted to own my own life. Eat when I want. Laugh and play with family and friends. Play outside, drink in all the beauty Nature has to offer us. Take care of my animals and those in Shelters. I always told my kids when "the time came", I would retire, and love nothing more than becoming their kid's Ranch Gramma-Nanny, while they were at work... Nope...

Thank you Myeloma for stealing my life, our dreams, plans, goals, freedom, health, spontaneity. Thank you Myeloma for putting a painful pin in my life's balloons of optimism. Thank you Myeloma for taming me with this awful sinus infection, seized back, giving me a reality check, that NO, I cannot function as a "normal" human being... ever again. Oh but I've tried so many times since diagnosis 8 years ago, and most of the time, you Myeloma, completely sabotage me, and let me know whatever I thought my "second half of life" would be, is not, cannot be, and is gone... forever...

My life now is being sick, avoiding sickness. Battling invasive bugs, battling mutating cancer cells.They're all out to bring me down.

Yes, I'll get beyond this awful bug currently humbling me. I'll buck-up, shut-up and be me again soon... Each day I'm a bit better since the cooties invaded late Tues, revving up Wed and then fully attacking with a fever of 101.9 when I woke up Thursday morning. I felt awful physically and mentally. I gave in, I accepted my status. Don't have a choice. I laughed-cried at myself every feverish, sore throat, head pounding, nose clogged moment. I just laugh incredulously at my daily Myeloma battle, and my crazy-thinking that I "could be normal" here and there. My entire purpose in life is just staying ahead of  Myeloma, one pill at a time, one infusion at a time, one injection at a time, one type of pain at a time.  And yes, as Myeloma patients go, my complaining is ridiculous in many ways, and my heart breaks for all those out there with serious myeloma immobilizing issues.

But for now, I'll whine, weep, be sad and angry... as I mourn my past health, and the journey ahead of me...


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


3 comments:

  1. Julie, this post with all the honestly shares what needs to be told. I am so grateful you share these thoughts as only one with your writing gifts can do so well. Love jc

    ReplyDelete
    Replies
    1. Aww JC!!! Love your words of encouragement and appreciation so much! Thank you for always reading and checking in, and appreciating my heartfelt rants. I wrote that with feverish frustration a few days ago, and today I am better and even took my weekly 40mg roids like a good lil filly :))

      YOU inspire me with all you do, and warrior so strongly forward with all your myeloma challenges! I love your ability to get out, and get in the saddle with your beautiful horses and family! YOU inspire me everyday JC, and I am so grateful for our amazing friendship xoxo :))

      Delete
  2. Youre so cool! I dont suppose Ive read anything like this before. So nice to find somebody with some authentic thoughts on this subject. realy thanks for starting this up. this website is one thing that's wanted on the internet, somebody with somewhat originality. useful job for bringing one thing new to the web! betfair online casino

    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.