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. 



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!

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  2. Love you Julie xo. Keep fightin!
    Leslie

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  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 Alissa 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 team, Dr Lee and Nurse Jalee at Kaiser PC, and Dr Spielberger and Dr Kogut at Sunset Kaiser/City of Hope hospital.
I began to formulate a new reality and accept my "New Normal".
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 remarkably 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!

And now... the 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

June 2010:
High dose IV Cytoxan
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
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 the Heck is Multiple Myeloma?!

Multiple myeloma is a cancer of your plasma cells, a type of white blood cell present in your bone marrow. Plasma cells normally make proteins called antibodies to help you fight infections.
In multiple myeloma, a group of abnormal plasma cells (myeloma cells) multiplies, raising the number of plasma cells to a higher than normal level. Since these cells normally make proteins, the level of abnormal proteins in your blood also may go up. Health problems caused by multiple myeloma can affect your bones, immune system, kidneys and red blood cell count. Although the exact cause isn't known, doctors do know that multiple myeloma begins with one abnormal plasma cell in your bone marrow — the soft, blood-producing tissue that fills in the center of most of your bones. This abnormal cell then starts to multiply. Because abnormal cells don't mature and then die as normal cells do, they accumulate, eventually overwhelming the production of healthy cells. In healthy bone marrow, less than 5 percent of the cells are plasma cells. But in people with multiple myeloma, more than 10 percent of the cells may be plasma cells. Because myeloma cells may circulate in low numbers in your blood, they can populate bone marrow in other parts of your body, even far from where they began. That's why the disease is called multiple myeloma. Uncontrolled plasma cell growth can damage bones and surrounding tissue. It can also interfere with your immune system's ability to fight infections by inhibiting your body's production of normal antibodies. Researchers are studying the DNA of plasma cells to try to understand what changes occur that cause these cells to become cancer cells. Though they haven't yet discovered the cause of these changes, they have found that almost all people with multiple myeloma have genetic abnormalities in their plasma cells that probably contributed to the cancer. For example, many myeloma cells are missing all or part of one chromosome — chromosome 13. Cells with a missing or defective chromosome 13 tend to be more aggressive and harder to treat than are cells with a normal chromosome 13. ~ From the Mayo Clinic