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

Sunday, September 19, 2010

Extreme Extremities

Ugggghhhhh my extremities continue to BBUUUZZZZZZZ 24/7
And I ache like I have a fever 24/7

I hesitate holding a glass now as I involuntarily DROP things

I do laps around my house a night in a losing attempt to rid my extremities of the electifying buzzing, pain, numbness and pins and needles
Anyone up for walks between 2-5 AM??? LOL

And I was presumptuous enough to think I escaped chemo-side-effects!  Gaahhh! go me!

And, adding insult to injury -  -  I really have lost most of my original hair and now just have some lifeless whispy strands left... but after head inspection, my family reports that my "new" hair is coming in...

I had Alissa take pictures of my riduculous head and "hairdo"... and I am considering posting these pictures... quite the entertainment for you I would think.... hahahahahahahahaaaa

But on the upside of this........ my style is a definite "wash and wear" ! Be jealous girls ----- no maintenance, no blow drying, no styling necessary !!!!  And - - no more Julie's trademark "Glue and Go" mini-bee-hive -poofy -clipy -do!

Be sure to check back soon, as I may just post a few pics of my crazy new cancer "do" ...
If I can get some pain and buzzing relief to be computer functional!!!  aarrrrrrggggggghhhhhhhhhh :(
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6 comments:

  1. UnknownSeptember 20, 2010

    I am buzzing too, plus, back on Dex. Dangerous. :)

    ReplyDelete
  2. RonSeptember 20, 2010

    Julie,Sorry you are having to go through all this!My medical sources tell me it is normal
    and you will get past it.Hang in there and with
    all your friends and your positive attitude
    it will pass.

    ReplyDelete
  3. AnonymousSeptember 21, 2010

    Needs to see a pain specialist.

    ReplyDelete
  4. JeanSeptember 25, 2010

    Dear Julie,
    My name is Jean and I’m a volunteer with the National Bone Marrow Transplant Link. Our organization helps patients, caregivers, and families cope with the social and emotional challenges of transplant from diagnosis through survivorship by providing vital information and personalized support services. We subscribe to Google blog alerts, where we found your story.
    Please know that others are thinking of you and pulling for you! To learn more about our programs and services, please visit www.nbmtlink.org or call 800-546-5268.
    All the best!

    ReplyDelete
  5. Graziano'sSeptember 26, 2010

    Hi Julie,
    You look terrific with your "new hair". I wish I could take on some of the buzzing. I'd surely take on the late night walks so that you could get some sleep. You are so full of life, this won't get you down for long. Hopefully this passes quickly and we can spend some time together. You're in our hearts everyday girl, love that you keep us up-to-date. Big hugs!

    The Graz's

    ReplyDelete
  6. AnonymousOctober 02, 2010

    Hay there girlfriend....sure do miss you but love reading your updates!! Your positive attitude and spunk is half the battle with this ugly monster!! Im so very proud of you and cannot wait to give you a great big hug. You know about the hair,,,just think about all the hair that you no longer have to shave. Now that is a positive. And all the fresh air you are breathing..not being laced by hairspray. And, how much cooler you are then the bunch of us. (If this heat keeps up much longer, Im going to join you!) Can't wiat to see you. OH..would LOVE to join you on a MOONLIGHT walk..ANYTIME!! You know Im up. Having to do 10-17 mile training walks now,,,and this heat is not cooperating. :) a walk with out the sun seems so inviting....with hugs, SharonAnn

    ReplyDelete

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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.