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

Thursday, February 6, 2014

Low Dose Treatment Reality Check

Dear Myeloma, 

You're trying to win, but I'm going to outsmart you!
You're trying to ruin my life, but I'm not going to let you. 
It's still hard to accept you are real in my life, even with everything I have gone through. 

Talking about you MYELOMA, saying the word CANCER, still is surreal. When people ask about me, I talk about you and how you affect me very matter-of-factly, like I am reporting about someone else. It's all still just an out of body experience... even 4 years later. I'm still trying to be Julie before diagnosis.


And so when you returned Myeloma, after I scored REMISSION over you, I still thought you were not for real in my life. I still thought one of my Oncologists would one day say, "we are so very sorry Julie, we misdiagnosed you! You are just fine! We apologize for mixing up your medical records with another Julie.

When you returned last year Myeloma, boldly invading my immune system and trying to dominate my fragile physiology, I really thought this minimal medication regimen would again stomp you into oblivion. I keep naively thinking I'm different; that the normal rules don't apply to me.. ha!

Well you have humbled me again Myeloma
You have shown me how tenacious you are 
You have shown me that I need to step up my battle and pummel you with greater chemical intensity
But don't forget Myeloma, I will not let you win!

Yesterday, at my monthly oncology appointment, I found out good news and bad news. I found out that my current diet of medications is having a bit of an impact on you Myeloma:
I found out that my IgA Immunoglobulins have basically stayed the same since last month, decreasing only a tiny bit 
I found out that my M-Protien, M-Spike has increased a tiny bit.
Emphasis on tiny bit for both...

So Myeloma, I found out that it's time step up the battle against you! That the current "low dose" levels of Revlimid and Dex will need to be increased, if I am to send you packing again Myeloma. I must accept that you exist in my body, and you're trying to kill me. I can't pretend you don't, and that you'll just magically disappear. 
Watch out Myeloma, I'm bringing on the higher dose arsenal to have a more powerful impact on beating you!

At this appointment, I asked my oncologist if we could go one more month (February) at the 5mg level of Revlimid. She understands the issue of "quality of life". She remembers my severe allergic reaction to higher levels of Rev (15mg). She also mentioned there are several more Myeloma treatment options now. She is very kind to me, and very reassuring. I read a lot online, so I know I have other chemo options. I know I will have to step it up. I know this is a forever battle. I don't like it, but I know it. And honestly friends, I'm just a bit scared of where all this going... but don't tell Myeloma I said that!

It was a beautiful day yesterday after my appointment. 
I (try) to embrace life fully, everyday. 
I will not let Myeloma limit me. 

 And so, I went for a little soak up life nature walk with my dear friend Kathy and our little doggies Hanna and Portia (who met many friends along the way)


I breathed in life, and stopped thinking about you Myeloma. 

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

6 comments:

  1. Wonderful attitude Julie! Enjoy life, choose your best, tolerable options, and fight on! Beat the beast back into submission. Praying for you friend!

    ReplyDelete
  2. Love you Julie xo. Keep fightin!
    Leslie

    ReplyDelete
  3. Yes, I love how you tackle life and attack Myeloma at the same time!! Yes, choose the best option that works for you and keep up the good fight!!
    I miss your face. Maybe someday we can meet up in the second floor restroom with the paper towels!! :) Love and prayers, Gay

    ReplyDelete
  4. Always an uphill battle but you will persevere!!!!!! Love you and the girls sending hugs your way!!!!

    ReplyDelete
  5. Julie,Great attitude! You have gone through a lot.Tough to make sense of things but knowing a higher power is in charge is our hope.You sure have
    had a great winter for being outside-even though we need rain.Anyway
    no more weather talk.Stay positive<I know you will!!
    Ron
    Ron

    ReplyDelete
  6. Julie, You are Amazing and a true Inspiration to others! I am praying for you and sending hugs & love your direction. Keep those positive thoughts working for you. Love, Roxanne

    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?

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.