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

Monday, January 20, 2020

First Myeloma Status Labs of 2020

Hello 1.20.20

Hi Everyone,

Today was the usual Monday Medication Madness of 40mg Dex Steroids first thing in the morning.
Then one Velcade shot in the belly jelly in the aftternoon.
Then 400mg of Cyclophosphamide chemo pills with dinner.
How's that for a Myeloma pummeling triplet cocktail, that so far has done the trick since about September 2018!! Hoping to stay on this madness for a long time, as I've got the routine down, and I can somewhat predict the weekly crash and side effects.

Yumm Yumm!

Get in there Velcade and do your thing!


I have a Dr consult in person this coming Thursday, and should have all my Myeloma status labs by then. I always silently "bet" with myself if my numbers will be around the same, or down, or up...
Not sure what I'm feeling, guessing from yesterday's labs... hmmm.... what's your guess?
I only cheated with doing half the Dex steroids back in Dec, but have been a good patient ever since. Back to "high dose" 40mg Dex weekly, so maybe my myeloma numbers are status quo, or down? I have figured out that when my WBCs are low, I get a bigger reaction from Dex, then when my WBC is higher. And I was shocked at my CBC results from yesterday!

My WBC is a shocking "high" of 3.7 (which often means I am sick, or getting sick), RBC low tho, but all my organ status labs, creatinine, calcium, etc, are in the low to normal range. How can that be?? How can this ol bod tolerate 10 years worth of continual chemo, meds, immunotherapy, etc. How long have you been in treatment, and continually on treatment?

You know those cancer articles, TV pharma commercials, poignant news features of one's loved ones being on chemo for 6, 9, etc weeks, or months, and the families are devastated with what happened, then fortunately able to celebrate treatment success... Well I do a mental gulp (sometimes a pissed snicker if I'm on my steroid crash), at the "short" treatment time mentioned,... as what I and my Myeloma buddies would do for a short treatment outcome, not to mention, being "done" with chemo!... My heart truly hurts for anyone's diagnosis, but TRY DOING 10 YEARS WORTH OF TREATMENT, not 10 months!! Try knowing your treatment is forever and endless, to "the end"... Honestly, lucky them for being able to "ring the bell" of being DONE with chemo treatment in a "short" amount of time. Ring the bell, ha, not this gal, thanks to Myeloma's incurable status. Not bitter, just facts, just reality. Sorry I keep perseverating on this, but I'm just still so surprised and shocked with my situation. This just can't be! How can I have cancer? How can I have incurable Myeloma? How can have been on weekly chemo treatments SINCE 2010!!??


Some of my Myeloma status labs will trickle in before my Thursday appointment, but some are not released until I see my Dr. But I will update this post as the lab results come in, so check back if you're curious my MM status.

All else is continued loony bin ridiculousness here... again, just can't wrap my head around how our lives became all about sickness, illness, side effects and dysfunction. Just mind bending. If you know us personally, you get this shock. But as I always say, I have so much to be grateful for, especially considering the BIG PICTURE out there, and what I read on all the myeloma social media posts. Wow, the suffering and challenges are just unreal :((

Here's to hoping your're able to work on your 2020 dreams and goals.
My top goal for 2020 is "Less is More" regarding slowly sorting thru all our 38 years of stuff... I have so few "good days" where I have the helium to do this, but thinning things out, and storing away the sentimental mementos is my top priority. It used to be that if my inner self was at peace, calm, organized and joyful, all was ok. Now, forget that LOL, it's all about the external visual. Lessening perceived visual chaos, which in turn lessens my inner chaos, and brings a sense of calm and peace to my life. Our awesome caregiver Chris moved my (finally packed up!) bins and bins and bins of Halloween and Christmas decorations out to our "storage trailer" in the back. Sadly this now "storage trailer" used to be Jim's off road toy trailer. Shows how much our life has changed, and the sad symbolism of a fun vacation trailer, becoming a storage shed :((((  Jim would be so sad if he could comprehend all this, but sadly, his Alz self just can't process our reality. He does know when I'm gone to chemo, and wanders around the house and property (with his caregiver) looking for me :(( He still tries to do horse chores, as that's the old routine embedded in his psyche. Just such a tragedy on every level for him, as he was so healthy, and so active, and should have had old age fun as an old ranch guy, just moving around slowly, but functional, picking up the horse poop, planting roses, raking the dirt, cleaning the barn, shopping for us, etc,... He loved nothing more than "doing", being busy, doing. He's just "existing" now...

We never know what's coming down the line for us. And I certainly did not anticipate the big ol train wreck we are...

This is what I had hoped for...

May your dreams continue to come true, and your life goals always be in process...






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3 comments:

  1. MattJanuary 21, 2020

    Julie, I'm glad your numbers look good. Our bodies are truly resilient. I'm like you...trying to minimize and sort through my stuff. It's challenging. so many memories. I look forward to reconnecting with you sooner rather than later.

    ReplyDelete
    Replies
    1. JulieJanuary 30, 2020

      hank you Matt! If I can ever get well, we'll get together. Hoping you are doing better than me :)) xoxo

      Delete
  2. UnknownFebruary 01, 2020

    Julie,
    This Roger Tilden a friend who will always love you I been reading about Brazilian honey bees make three kinds of honey green,brown and red that kills cancers of all kinds. Even in late chemo drugs have failed.
    Julie what kind of friend would I be if there is hope now 4 u to live.listen to me Julie call me on land line so I can get you phone number ASAP. My Number is # 1-661-722-5678 call me!!!

    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.