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Monday, May 16, 2016

May Milestones and Updates Coming!

Hello May!

*Update to the Updated Update*
Been such a crazy "chemo break week"! Too many (wonderful) things came up, and I had a crazy whirlwind week. So exhausted! But that "good exhausted" from Living Life. One more event to go today (Sunday May 22), then it's back to chemo, dex and side effects ruling my life...
But until my next detailed blog on May 26, here's the headlines: 

*Unwanted Update*
Friday May 20 SCT-oncology appointment update:
I found out news I did not expect.. at all. I still live in a "I really don't have cancer that bad dream world" -
IgA up over 800 (that's 2x the HIGH end of normal) 
M Protein spiked from "not detected" to .75 (zero is normal)
Wow, how can this be Kyprolis? Thought you were my best friend? Boooo :(( As always, I expect good news, good results and I am truly shocked when I hear myeloma continues to win.


Last week:
I didn't make it to this year's SCT Reunion,
but my Tee and Badge made it back to me!


Seriously? Really!
Dead battery surprise
when I left my most recent Kyprolis appt!
O myeloma! What next???

My Myeloma girlfriend Cynthia
attending the Survivor's lunch

My friend Suzanne, breast cancer survivor
at the Survivor's lunch


*Updates and More Updates to the Update*

Finally went to my office this past Tuesday! Wow, what an emotional experience that was seeing all my wonderful college colleagues! My office calendar was still on October 2015. Made some decisions...

First in 20+ years, spontaneous (free tickets) trip to Disneyland, and most likely last trip. But what an enlightening experience that was on so many levels. Details and pics to come... I surprised everyone, and went on a roller-coaster! And again! Ha! take that myeloma! 
Myeloma Crowd blogger Lizzy writes our roller-coaster life here!

Attended Relay for Life... sweet pics to come.

I know most don't want to hear this, or accept this, but Myeloma and being a sickie owns me. Trying to do all these activities this week, was just overwhelming for me, but the timing was what it was, and I just went with it. Having a "chronic illness" truly is life altering. Imagine feeling like you have the flu 4-5 days per week, and only 2-3 ok days per week. Imagine always being surprised when you do actually feel good, not the reverse. Imagine always having to explain your "special needs"... It's a crazy way to live. Yes I pushed myself beyond my limits and I'm paying for it now... I am so exhausted. But I HAVE TO LIVE while I can!

Haven't really had a chance to process my BAD news yet...

Until next blog...thank you for reading and caring!


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


8 comments:

  1. Well I guess I'll have to check back for details! Great pics in the meantime though, and I hope the future news is good!

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    1. Hi Linda! Thanks for always checking in, and your sweet, encouraging comments xoxo

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  2. Things sound very positive in your world. Looking forward to your latest lab results....

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    1. Hi Christine, yes I try to stay positive, that's my nature. I don't want my remaining years to be sad and depressing (as they could be for all of us with a MM Dx). I can't wait to feel well enough to start clearing out closets and cabinets like you! And I will let you know when "our" magazine comes out! xoxo

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  3. AnonymousMay 24, 2016

    Hi Julie,
    You are such an inspiration! I have been reading your blog since my diagnosis in Feb 2013. I so look forward to your posts; you really are making the most of it. Thank you for sharing your life and experience with us. God bless! Carolyn McNichols

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    1. Aww Carolyn, so nice to meet you, and thank you so very much for taking the time to comment and let me know you enjoy my posts! Means the world to me when my "invisible" readers comment. Thank you for your appreciation of my story and kind words! I would love to know your MM story. Do you have a blog? When I was Dx in 2009, reading other's blogs was so vital and supportive for me! If you'd like to share your Dx story with me, and don't have a blog, please email me Missy.Myeloma9@gmail.com . Thank you so much Carolyn and I hope all your treatments are going well and your MM is under control! :)

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  4. I am so bummed I missed you at Relay! I am glad you made it out. This was the first one I missed in a long time, but I think it was fitting Megan's graduation was on Relay weekend...what an amazing way to celebrate my survivor. I am glad you got to do all that too! You are truly an inspiration! :)

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    1. Hi Teri! Thanks for checking in and commenting! Sorry to have missed you, but huge congrats to Megan on her graduation! You must be a very proud Mom! Congrats to Megan on all her academic success! Takes after her Mom :)) Thank you for all your support and kind words Teri!! xoxo

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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 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.