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

Thursday, March 5, 2015

Sick of being Sick, but I'm still Here!

Hello March 5th of year 5.
Thought this was a great poster explaining crazy Myeloma:

Today begins cycle #5 hundred, thousand, million something of Revlimid and Dexamethasone. Each month now I am pairing more Rev 15mg with less Rev 10mg to hopefully get to full dose 15mg without side-effects worse then I have now...

But having said that, I've really realized that my functionality in life now is totally controlled by my GI system! "Normal" people can go (lol, no pun intended) about their daily routines, without worrying much about when, where, what, how, what if, of their GI functions. Me... ugh, my whole life now is controlled by thinking I might be ok, scheduling things, then last minute cancelling because I wind up being owned by my lower GI's angry explosions! (Sorry). And coming off my one week chemo break, I'm realizing it's not always the meds causing my issues... it's the cancer itself creating havoc in my system.

Geezzz, back in the day, without a thought of "it", I would be away from bathroom totally. Backwood bushes never scared me :)  I used to be a remote-area backpacker, horseback rider, hiker, skier, biker, walker, beach/lake sporter... not to mention, all my career functions, family events, socializing, etc. Back when my GI system was "normal", anything, anywhere, at any time was possible! Now, here I am, posting this post on a beautiful blue-sky day, inside my house with that stomach yuck, and angry GI, writing between visits to my bathroom. Ok, enough of this.. you're probably all sick of hearing my poo rants, and I'm going to go drink a bottle of Imodium lol !

Here's my recent numbers: 

WBC's = 2.5 (so low- why I feel so yucky and fatigued), 4 - 11 = normal range
Platelets = 118 (low), normal range= 130 - 400
M-Protein = 1.20 (yippee! .05 lower than last month), normal = zero
IgA= 1250 = (yippee! 200 points lower than last month), 70 - 400 = normal range
Beta-2 Microglobulin = 2.1 , normal range= .8 - 2.2
ANC = 1.6 (low), normal range= 1.8 - 7.7

Many more stats, but those are the ones I watch the most.
So a bit of good news, thanks to Rev 15mg. My numbers are roller-coaster style, but that's ok. As long as there's not a steady month after month climb, I'll take this- awful side effects and all. My IgA is still triple the high end of normal, but I AM NOT wanting to be more aggressive with chemo treatments, as I would then have ZERO quality of life!

So I do what little I can do, when I can do the little I do. I plan, I cancel, I plan, I attend... then rush home to my bathroom! Such is my life now. But, I have a life and I'm here 5 years after diagnosis! I help a few students each week, and help rescue animals when I can. Since I'm home so much now, and travel is currently out of the question for me, I convinced Jim to let us save another life, needing a home :)

 Just look at that darling face! 
She's been at the shelter since Thanksgiving! Owner surrender :(
Poor girl, no one wanted her, and her time was up...
We'll be picking her up today... if I can leave my own litter box!

And so March is Myeloma Awareness Month... ugh... I'm tooooooo aware of Myeloma, but too many people haven't clue what it is, and how devastating it is...
http://myeloma.org/Main.action
I am VERY grateful for all the new current research and new myeloma meds being developed! Keep up the good work Pharma researchers and scientists! I so appreciate you working to prolong my life!


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


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6 comments:

  1. Vivienne SmithMarch 08, 2015

    Ah Julie, in spite of all the terrible side effects, which I know are awful and debilitating, I am so happy to hear your M Protein reading has come down. I hope you carry on improving like this.

    Always in my thoughts
    xx

    ReplyDelete
    Replies
    1. JulieMarch 16, 2015

      Hi Viv, thanks for checking in during your incredibly challenging and hectic life! I am so happy to read that Jimmy is home now, and able to recover from his SCT at home. Hoping all is calming down for you and your family! xoxo

      Delete
  2. AnonymousMarch 10, 2015

    Julie, Hopefully March will be much better...I am also happy to hear your M Protein levels have come down....All of my family have joined me praying for those awful side effects. You have such a precious way of touching those people in your path ...even when you are having bumps in your path.....Julie, you are an amazing friend and are loved by so many..."Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can "! The words of a Truly Loving Angel !!!!!!!!! I am blessed you touched my life.......... Evelyn

    ReplyDelete
    Replies
    1. JulieMarch 16, 2015

      Thank you Evelyn for being such a dear and supportive friend. When I can get my GI system to calm down, we'll do our long planned lunch date! xoxo

      Delete
  3. LindaMarch 15, 2015

    Hope you are enjoying your new kitty...such a big heart! I sure hope you can find relief from all the GI issues, and consequently regain some freedom to travel. Glad the M-spike is down! Stay in touch with us~

    ReplyDelete
    Replies
    1. JulieMarch 16, 2015

      Thanks for always checking in Linda. Hoping EZ is doing great and you and your beautiful family are having wonderful adventures together! Update your blog occasionally!!! :) xoxo

      Delete

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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.