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

Tuesday, May 5, 2015

My Heart and Head Hurts so Much

5.5.15


My head aches from too many thoughts
My heart hurts more than words can convey
Especially for those who's hearts are overflowing with so much pain and sadness

I have so much to say, but for this blog... pictures will tell the story...


I don't understand you stupid cancer


Diagnosed T-cell Lymphoma late Nov, 2014 

 Mom and daughters


Allogeneic (brother/donor) stem cell transplant March 31, 2015


last family portraits...


last beach ride, Ashley and Mom 


last beach trip, Jordan and Mom


last Christmas


cancer benefit color run


~    ~    ~    ~

Forever free:
May 6, 2015


5.1.2015



My 5 year COH SCT Reunion
so very bittersweet...

I'm so grateful
But with a heavy, sad heart

I understand the meaning of "survivor's guilt" ...





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



8 comments:

  1. Julie,I admire your concern for others even when you have to through so
    much pain and discomfort yourself.Real winners think and act like that
    and I pray your wellness comes soon!
    Ron

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    Replies
    1. Thank you Ron... this has been so entirely tragic from her diagnosis to passing. I'm in a stunned daze and my heart hurts so much for her and her girls... not to mention the similarities of our situations... enjoy your bucket list trips!

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  2. AnonymousMay 15, 2015

    OMG!!!! I can't stop crying.......Pictures do tell the story. I am so sad for her daughters. What an awful time, I wish I could hug them. Love you Julie, keep fighting and writing. Drive that Baby Blue with the windows down soon.... FUCK IT, get crazy and go TOPLESS too!!

    ReplyDelete
    Replies
    1. Hi Anon- thank you for your support and sweet comment! This life and what happens to everyone is just so inexplicable... thanks for your great comment!!! :)

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  3. Behind on blogs Julie, so just reading this. I'm so sorry. Once again cancer has stolen someone precious from their family and friends. The pictures speak a thousand words...Did you meet her through COH? She and her daughters are beautiful. There is no explanation for why some are taken so quickly, and others survive. My faith helps me to know that this is our temporary home, and those who go before us are experiencing inexplicable joy, but for those of us left behind, missing them, wishing they were here experiencing life's big and small moments with us, it's heart wrenching. I have lost two of my very best friends to breast cancer and my father to lung cancer. I wish every day they were still here to make more memories with. I treasure gifts from them, recall all the special times we spent together, and in some cases wear clothes and jewelry that belonged to them, given to me by loved ones after their passing. It helps keep them close. Thinking of you, and your battle, praying you can carry on with hope and determination, being grateful for every day. Much love being sent your way from NC. Linda and Big EZ.

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    Replies
    1. Thank you so much Linda xoxo

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  4. I see now that you are speaking of Claudia, your son's girlfriend's mother. Re-read your post about her chemo and radiation preparing for transplant, with her brother as a perfect match. I know your family has been grieving the loss of such a warrior. Again, I'm so sorry.

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    Replies
    1. Thank you Linda... yes Claudia's passing has been such a shock to our family. I still cannot believe how this happened to her, and how our (adult) kids both have moms with blood/immune system cancers, same Drs, almost the same treatments, both having SCTs (although hers was Allo, mine Auto). And Claudia was 12 yrs younger than me... so so so tragic. She seemed so very strong during treatments, and no ever even thought anything but remission would happen! We'll be in shock for life, and my heart will always be broken for her girls, family and us. Cancer just makes NO sense in circumstances like this. Thank you so much for all your support Linda. I just love our across the country friendship. Love to you and EZ! 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.