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

Monday, August 8, 2011

1 year 1 month post SCT 2011

Hi Everyone-
Just a quick update...

Life's good... most of the time
Busy... all the time
Complicated... all the time
Still trying to find what works for me in the "new normal"...

Still on maintenance Revlimid Chemo
Always tired
Still have Neuropathy, but certainly not as bad as months ago
Still have crazy nerve and arthritis type pains
Had an MRI on Sunday
Hopefully that will identify what's causing my right arm dysfuntionality...

Too many, too close are diagnosed and gone
Too many, too close are diagnosed and going through challenging treatments

I feel very fortunate for my quick diagnosis and treatments and current Remission
Reflecting that I have been on 3 types of Chemo (Revlimid, Cytoxan, Melphalan) since Jan 2010!
But I'm not happy with my transformation
Still mourning the loss of "Goldilocks"

Questioning my future
Wondering my prognosis
Scared to acknowledge my marriage to C A N C E R

Trying to have fun
Trying to bring back normalcy


7 comments:

  1. Julie,
    Very realistic picture of life with MM...gotta take the bad with the good for sure! Though you and EZ live with aches and pains, the GOOD NEWS is remission! Keep on celebrating and enjoying your blessed life! (P.S. I really like your hair just he way it is!)

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  2. It's been almost three years since I was diagnosed and I'm still trying to accept that I have cancer and accept this new normal. I think healing the body is much easier and quicker than healing the spirit. I'm still working on both. Thanks for sharing. I like your hair too!

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  3. I three like your new do. I also like my own though do sometimes find myself (generally when I'm having to concentrate on what I'm being told) brushing my left hand over my ear to move my non existent long locks back! ;D

    Onwards and upwards and the shoulder dysfunctionality could just be old age. ;D

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  4. Hang in there, Julie!! I went by your office the other day and there you were busy at work helping COC students!!! Yay for you!!

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  5. Julie,Have a great school year!!!!It is truly
    amazing how you keep going helping students with
    as you said 20 months of being on a form of Chemo.It seems like encouraging people makes
    you stronger!!!
    Ron

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  6. I apologize for posting this on your blog, I just didn’t know how else to contact you! My name is Natalia and I’m the Community Coordinator for an online health community called WEGO Health (www.wegohealth.com). I came across your blog, Julie’s Myeloma Moments, while doing some research into the online Blood Cancer community. I was so impressed with the great resource you have created for the greater Blood Cancer community.

    Just wanted to drop you a quick note because we recently launched a new video platform called WEGOHealth.tv and are in the process of building a Blood Cancer Channel featuring the advice, information and wisdom of Health Activists like yourself. I think you would be an excellent addition to the channel and I would love to chat with you about possibly creating a video with us!

    Please check out our site; http://tv.wegohealth.com/ and get back to me at your convenience if you have any interest.

    I know this note is a little out of the blue and I understand if it’s not something you would be interested in, but I didn’t want you to miss out on the opportunity.

    Thanks,

    Natalia
    Community Coordinator
    WEGO Health
    nataliaf@wegohealth.com

    ReplyDelete
  7. Hi Beautiful Lady, Glad to hear you are doing so well............. I love your hair and Jims as well. You look wonderful. Your smile tells it all....... We love you Dear One. Evelyn, Neel, Tricia, and Emily....

    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.