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

Saturday, October 4, 2014

It's Fall! Leaves are Falling! Pumpkins are coming! But My Numbers are Not Falling...

Hello October!
The nights now have a crisp chill in the air, even though we're still roasting during the day (and that's not roasting marshmallows)! I love the dramatic Fall colors as nature changes the leaves on trees and foliage everywhere.The horses are growing their winter coats already! And everyone is thinking and drinking Pumpkin!

My current life is such a roller-coaster in so many ways-
I have good days, and not so good days.
I have days I can eat, and days where... well you know by now... days where it's me and "John" hanging out together way too much!
I have days where I think I can go into work, then my side-effects sabotage me.
I have days where my aches, tingling, buzzing and neuropathy truly surprises me.
I have days where my GI symptoms just won't subside.
I have days where I feel I've been punched in the gut.
I have days when I schedule too much (which would be next to nothing in a "normal" person's life), where I am just so tired and exhausted.
I have days when I don't think I can make it from my office up the hill to my car. 
Sadly, I have too many days where I actually can't recall what it feels like to be "normal". I sure don't like this sickly cancerous "new normal" at all.

And then... I have days where a breeze catches my hair in a certain way (yes I have decided to grow it out), or the sun or moon shines in a particular way, or my animals do something remarkable, or I taste something delightful (no metal mouth!), or I drive my lil Bug with all the windows rolled down, or I have a really meaningful conversation with someone, or I do something that really impacts someone's life, or something's really gut-splitting funny and I get to laugh...a lot.
Those are the moments when I remember what "normal" is.

Thanks for posting this Kelly, so I could steal it!

And so, true to theme, my Myeloma life is currently a numerical roller-coaster. Those dang Myeloma numbers were up again this last blood test. But of course they are... those silly little cancer cells just want to remind me of my back-in-treatment-for-a-year-now anniversary. But actually, I really haven't ever been fully out of treatment... just a little chemo break for part of 2012/2013. It's coming up on my 5 year diagnosis anniversary. So we took a little drive, just because... just because we still can, and we are still here! So there, take that, stinkin myeloma!

Here's my recent stats:
WBC's =  3.3 (4.0-11 scale) low, thus very susceptible to everyone's cooties
ANC (Absolute Neutrophils Count) =  1.3 (1.8-7.7 x 1000/mcL) = low!
M-Protein/M-Spike=   0.82 (normal = 0.0) higher = (bad)
Beta Globulin Electrophoresis=  1.47 (0.65-1.10 scale) higher = (bad)
Gamma Globulin Electrophoresis=  0.42 (0.70-1.60 scale) lower = (bad)
Protein Electrophoresis= (always) Abnormal

IGA= 1140  (70-400 scale) up almost 3x normal (I'm "high risk" IgA Myeloma)
IGG=  287  (700-1600 scale) too low
IGM= < 17  (40-230 scale) too low

So like a good patient, I took my Dex steroids today, started 10mg Revlimid again for 21 days, popped a baby Aspirin, Acyclovir (shingles preventative), Vitamin B12, D3 and will start Mepron again asap (as that also contributes to the "volcanic" events). I'll use Omeprazole, Imodium, Lomotil, etc, as necessary. My head is headachy, my skin is buzzing, my right lower leg is swollen, I am forever thirsty, and when I walked in the half moon moonshine a bit tonight, I "dribble" from the Dex... hahahaaa so funny!

But life is good in the BIG picture of things, and I am STILL here. From what I read and hear... I've outlived my probability and statistics! Whooo hoooo!!
And to celebrate my life and passion for rescuing the 4 baby sparrows, my dear creative artist friend Kathy made me this stunningly beautiful painting! Thank you for your friendship, love, support, laughs, deep conversations and amazing artistic creativity Kathy! Looove you and my Birdie Art so much!!!

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

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
.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?”)


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.