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

Thursday, May 9, 2019

Trying to Navigate 2 Incurable Illnesses...

5.9.19
Hello May


Hello Loyal Readers...

I'm just too beat up to post... but I will, as I so appreciate your caring and interest in my journey, and your sweet comments!

Briefly...

Friday May 3, was Jim's birthday... he fell, in the kitchen, front first... 
Saturday May 4, too many challenges, too much reality, too much sadness... 
I finally committed to trying a Caregiver
I called
Monday May 6, Chris, Jim's Caregiver, Personal Assistant and "Butt-ler" began
He's awesome, and wonderful, and caring, and extremely helpful!
So grateful for him.
Timing is everything in life, right...


Monday, May 6, I had my usual 40mg Dex Steroids, 2 injections of Velcade, and 400mg Cytoxan, 8 capsules. 

Monday evening, took our beloved Abbie to the Vet. She too is not well...
See the IV fluids she's receiving here



Tuesday May 7, Full Body Pet Scan. 
Prior to, I had to follow a low glucose, low carb diet for 24 hours, then fast 8 hours prior to the Scan. My appt was at 2pm. They test my glucose level first, which was in the 80's, so I was fine. Then they inject me with a Radioactive Glucose solution which "lights up" the all the myeloma hot spots, lesions, tumors, plasmacytomas, and whatever else they are looking for. Scan went fine, but as the evening wore on I began to feel the full effects of Monday's chemo and steroids, mixed with the Radioactive Glucose solution. I had a yucky sweet taste in my mouth all night, and increasing nausea. I think the 2x shot of Velcade is causing me more nausea, on top of this solution. Yuk!

Hello double shot Velcade every Monday

Hello Pet Scan
window to my bone realities


Early Wednesday, May 8, around 5am I was suddenly awakened with an extreme "cleanse". Felt awful, exhausting, but always good to be "cleaned out", right. 
And another cleanse today.

Today, Thursday May 9, blood tests for my Monday, May 13th Dr appt. 
What an appt that will be with Myeloma status results AND Pet Scan results... 
Maybe I'll post again then with results. Dex will prop me up, and give a fake ok for a few hours.

And my CBCs, WBC result just came in... yep... 1.7 (normal = 4 - 11) 
Awesome
Don't know how I am functioning 


A friend asked me- "do I ever get to feel good"?... 
"Feel Good"... hmmm, such a deep question now. 

Can you imagine living life
Can you imagine navigating life with 2 terminal, incurable, life stealing illnesses. 
I can't, but I am. 
I used to be such an optimist
Now I am a numb realist
I compartmentalize everything
I just go through the motions of life
I still (sometimes) find joy and fun- I make myself
But with a heavy heart and dark cloud shadowing everything, always

These words-
Hope, Strength, Be Positive, Optimism, Fight, Battle, Warrior, Survive, Brave, Hero, You Can Do It, Keep Going, Have Faith, Celebrate, Be Happy... 
Words I used to be able to relate to, feel in my core... But not so much any more. I am so detached from myself now. I am so numb. I have to be, just to get from one task to the other, and through one day to another. 

I just do what I have to do, because it is the Right Thing To Do. I Just Do. Just Do It, whatever the "Do" is...

This is so not me, the me I used to know and be. My "me" is so depleted, so sad, so in shock. 
It will not all be ok. 
It will not "get back to normal"
It is just a terrible tragedy on all levels
A sadness beyond what I ever expected in my life
My heart aches for all those suffering with body and life betrayal out of their control

Thank you for caring as you do, and reading about my life





4 comments:

  1. AnonymousMay 10, 2019

    Hugs,Julie. So glad the help for Jim is going well...Oh how you both need it. We need a cure so bad. I know the doctors and researchers are working so hard to find one and we have come so far, which I am grateful, be we need a cure. Love JC

    ReplyDelete
    Replies
    1. Hi Cowgirl. Yes, yes and yes! Body betrayal on so many levels. Unbelievable. For all of us. Hoping you are doing and feeling well, and able to ride whenever you have the energy! Let me know your lab results when they come in. You're one strong, determined cowgirl, that I am so blessed to have in my life :)) xoxo

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  2. The changes keep on coming, don't they. We can't stop them much as we might like to, all we can do is roll with them. I'm proud of you for reaching out for help with your Jim, keep reaching, no one should have to do this alone (or numb). Hope your test results exceed your expectations! xoxox, Bernadette

    ReplyDelete
    Replies
    1. Hi sweet Bernadette, yes I finally accepted help regardless of what may happen with potential cooties. Chris is so awesome and caring with Jim, and me. He's amazing! So grateful. And yes, you are right... changes... always... the only "constant" in our lives. But I'll settle for a little "nothingness" for a while. Hoping all is calm, happy and healthy with you and yours, and your treatment. xoxox :))

      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 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.