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

Thursday, September 7, 2017

Waiting for News... Always Waiting and Wondering...

9.7.17
Hello September! How can this be??

So I did my labs on Thursday Sept 7 and received some of my results later that night. With Kaiser, good news shows up online, but with the most important ones, the myeloma markers, I remain in suspense until my Dr appointment Tuesday Sept 12. Myeloma is such a waiting and wondering game on so many levels. Always waiting to know how I am. Always waiting for the "ball to drop". Always wondering if my treatment is still working. Always wondering if my cells are still dominating or if myeloma is winning. Always wondering... am I ok. Will I be ok. Such an "out of body experience", for something that is an "in body" experience... crazy way to live... But I am living and that's what matters!


Surprisingly, I saw that many of my CBC's are pretty decent. But as expected, my WBC's are low, "Neutropenic low", as I am at the end of my 21 days of Pomalyst. My Dr and I have my Neutropenic status down to a routine now. She has me do 3 days of Neupogen-Zarxio shots immediately following my 21 days of Pom, and that bounces my WBC's up, along with the 7 day break from Pomalyst. It's amazing how drained and depleted I feel. It's so hard to describe FATIGUE to a "normal" person. So different from "tired". Depleted is really the best adjective. But onward always. Hello my friend Zarxio growing WBC's, boost me back up.

9.9.17
Whoohoo... one of my myeloma markers slipped through the system. Actually, maybe it's not a "slip" as it's in the... sit down for this one... it's still in the NORMAL range. My Beta 2 Microglobulin is on the precipice of  the high end of normal, but this still counts as normal! I'll take it, compared to earlier in 2017:


Range = 1.0 - 1.8

Take a look at where I was in 2009 at Diagnosis, then again 2013 when out of Remission, then the scary levels at the beginning of 2017!

So using this one test as a hopeful indicator of my remaining lab results... I'm optimistic that my IgA, M Protein, etc, will also be ok, thanks to Darzalex, Pomalyst, and Dex!

I attended my local myeloma support group meeting today. I am always so shocked and amazed at the variance of myeloma's vengeance and presentation. I met a man a few years younger than me who has been dealing with myeloma since 1999!!! Whaaaat??!! Nope, that's not a typo! 1999!!! He was "treated with the original Thalidamide, and a few other things", he "thinks it was Melphalan and bone strengtheners"... and then he stopped treatment when his numbers were good. Stopped treatment!! Yes! For years! And he said he really didn't think about it much, until he began bleeding a lot, hemorrhage type bleeding, and was extremely fatigued, became anemic, etc. Incredible! We talked about our early symptoms of bleeding out, anemia and lovely volcanic diarrhea on Revlimid. He is in the process of considering meds vs stem cell transplant. Wow! I have read of other MM patients with years of survival in the double digits, and I am both amazed and energized by this, as I approach 8 years of survival!

 
Every night, after the blistering sun sets, I head outside to do the horse arena clean up. The night air is beginning to calm the angry heat of the day. I hear the birds settling in the trees for the night, the barn owl's plaintive "whoo-hoo", the soft crunching sound of the horses scratching each other's annoying fly bites from the day, and sometimes, a gentle rustle of a breeze in the trees, cooling the parched earth....
And then.... the Gift of the Moon! Rising, blazing into the night sky, a flashlight from the heavens, lighting my way, energizing me, reaffirming "I'm alive"! It's really so magical to me. Moments like this remind me how grateful I am for the success of all my treatments.


Moonlit nights have always taken my breath away. This beauty gives me pause to process my life. Back in the day, we would take the horses on moonlit trail rides. It was so incredibly magical, that flashlight in sky, lighting our way. I always felt so alive, the quiet of the night, the soft impact of hooves in the sandy soil. Invisible wildlife observing us from the safety of their hideouts. Crisp night air, filled with sagebrush scents. Humans connected to horses, in an unspoken language.
Back then, my thoughts only in the moment, pure joy, happiness and awe. Now, on moonlit nights, gazing at the starlit sky, I try to process my circumstances. I still can't. I still don't comprehend and understand what has become of my life. I think about my daily treatments keeping me alive. How do these chemicals work to keep me alive. How am I still alive with all these crazy cellular mutations happening inside of me. How have I been able to withstand and tolerate all these chemicals for 7 years, 9 months, and be as "functional" as I am? How did myeloma happen to me? What will this week, month, year bring. What will I find out on Tuesday Sept 12? Hello Moon, thank you for energizing me, making me smile as I reflect on all the memories we've had together, overwhelming me with the vastness of this life, making me so feel alive. So grateful.


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



2 comments:

  1. Loving your NUMBERS! Oh yes, those crazy numbers that tell you how you feel!!! But with the new and improved combination of elixir, those numbers are laughing at the very cells that they record. HAPPY, HAPPY, HAPPY. It's working.

    And I am so amazed at how functional you are with the chemicals. How those brilliant doctors found a way to make it all work. And... How well you do actually feel! I know you have your fatigue moments...or minutes...or hours. But then you do have your moments...or minutes...or hours that it is all pretty good. And the side effects have seemed to improved too!

    It's all a huge mystery. Everyone so very different. And yet somehow we are all the same......... We wait for the next wake-up call. And for all of us, the calls keep coming.

    But you are so amazing. I'm once again so happy to read your "seven" blog!

    Again so so so happy you are doing so well. I am strengthened by your courage and perseverance. Stay well and happy, my dear friend. I hope to see you soon.

    Love, Susan

    ReplyDelete
  2. Love you Susan! Thank you for being my ever faithful loyal reader and supporter!! xoxo :))

    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.