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

Saturday, December 6, 2014

Racoons, Roids, Roller-coaster Results and my upcoming 5 Year Anniversay

Hello December, month of so many initial diagnosis anniversaries.

Blah, blah, cancer.... blah, blah, blah you have cancer... blah, blah, blah it's called Myeloma...Mye-who? huh? blah, blah, blah, blood plasma cancer... high risk My-e-loma... MY what the .... ???

FIVE years later, I still: 


Yee-haw! Bring on another 5 please!
Five year survival is a BIG DEAL
in Myeloma years!

So my most recent stats reveal I continue on an up down up down up down Revlimid roller-coaster. But you know what... I'll take it! One month my stats are UP, the next month they're DOWN:

October IgA was 1200
November IgA is 1180 (normal range is 70-400)
Not really statistically significant, but at least it's down .20 rather than UP .20 !

October M-Protein was .94
November M-Protein is .92  (zero) = cancer-free and/or remission
Again, not really statistically significant, but better .2 down. My oncologist and I talked again about moving to 15mg Revlimid... and I said, how about AFTER the holidays! And she said, "no problem". Love her!

Other blood levels and WBCs abnormal- I'm still immune compromised and scared of public cooties! And people still don't get it! "But Julie, you look so good! How can you have (incurable) cancer?" Thanks Myeloma, you're such an invisible confusing deadly cancer! Maybe I'll get a tattoo describing my situation... 
Speaking of tattoos, look at this amazingly special tribute to me from an incredibly special special special person in my life. Just took my breath away when she showed me this and told me she had it done on my birthday! wow! We are together forever, every "step of the way". She had me write out my nick-name and hearts months ago... but I had no idea this was why!!! Love you secret friend!



 And then is happened last Saturday!!! omg this lil guy is beyond cute!!! My doggies "treed" him overnight and he stayed there during the day. He/she is just an adolescent, and may not have developed the "tree smarts" yet, or the "how to trick dogs" technique yet. So we kept the dogs away from this area overnight, and he managed to get to a larger oak tree... and then it began raining... felt so bad for this "cuddly" bandit. Finally, the following night he was able to sneak away. Hopefully back to his family den. Yes I know their potential vicious, rabid, destructive nature, etc... BUT JUST LOOK AT THIS FACE!!! Just made my day being able to get these darling pictures!!!

So take that Myeloma. I receive the gift of life daily! So many many many special incredible people and animal experiences in my life daily! And I still make a difference on this earth! I don't get how Myeloma happened to me, but I AM SO VERY FORTUNATE TO STILL BE HERE!

I'm doing a little experiment with Dex this dose: I am splitting my 20mg weekly dose in half, taking 10mg today and 10mg tomorrow. I still got my Dex buzz today, and I'm up way too late again, but not the INTENSE SURGE I get when I do 20mg in one day. How the heck did I do 40mg, 4 days on, 4 days off for 6 months in 2010. I was one really sick puppy back then, so it really affected me differently. I'm still a sick puppy, but thanks to everyone and everything involved... not as sick as 2009/2010!

Thank you to my followers for reading and commenting on my silly musings. Means A Lot to me! And I just noticed that my PageViews have rolled over to 55,xxx!!! Do you even know how symbolic that is?! wow! My 55 BD, my 5 year Dx anniversary, and my 5 year SCT birthday coming up in July in 2015! wow! Time for a lottery ticket with lots of 5's !!!

Hoping your treatments are treating you well, life is bountiful and beautiful for you, 
and you live your daily "bucket list"!

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


4 comments:

  1. You definitely are the reason behind many smiles! (: ♡

    ReplyDelete
    Replies
    1. Thank you Anonymous for your sweet comment :)

      Delete
  2. Roxanne JennersonDecember 15, 2014

    Love You Julie!!!

    ReplyDelete
    Replies
    1. Thank you sweet Roxanne for being such a dear friend and supporter! Love you always, Julie :)

      Delete

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.