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

Tuesday, September 25, 2012

When Normal becomes Abnormal

Hello loyal blog readers!
A sincere thank you for caring about my status and continuing to return here for my monthly postings and musings! (I actually wrote this weeks ago, but never posted it)

I know it's been a bit longer than usual since I've entertained you here-
I've been busy recovering from recovery and I'm actually trying to figure out where my head is regarding my current news.
Hence the feeling that "normal" now feels "abnormal"...

It is with cautious celebration I announce to you that I have been officially taken off ALL Myeloma treatment medications! (for now that is) ----> Let me detail that, just so I can absorb the full impact of what I write:

As of my last oncology appointment, I am no longer on ANY chemotherapy or any other cancer related medications, treatments, pills, IVs, prep for hospital stays, maintenance medication therapies, etc
I am not drinking, swallowing, chewing, ingesting via mouth or veins, ANY cancer fighting medications at the moment of this blog writing!

Seriously though, the words ANY and ALL are kind of scary!!!
Good news: yes! Scary: yes! Concerning: yes!
No cancer fighting meds = the possibility that Myeloma can come back at any moment!
I live with the thought that those monster Myeloma cells are perched waiting with evil, far reaching tentacles, looking for a weakened cellular moment to sneak back in!

Throughout all my treatments since Dec 30, 2009, I was secure in knowing I was well taken care of by my expert medical staff. I felt very confident with their expertise and recommendations for my treatments. At diagnosis, I felt as if I was suddenly tossed onto a giant roller-coaster, where you're told to jump in fast, buckle up, and whoosh- you're swept away on this lightening fast, intense journey, with no options to get off.
You just do it fast... to save your life... fast!

As scary as all the meds and their crazy side effects were, I actually felt powerful, "transformer", super-hero like, knowing I had research-medical science on my team and chemotherapy coursing through my blood, gobbling up my Myeloma cells since January 2010!
Weird as it sounds, twisted as it may seem, it's actually unnerving not being on ANY cancer medication or any chemotherapy. I am relying completely on ME to keep cancer away...
Scary, because a few years ago my body chemistry sabotaged and betrayed me, and "gave" me cancer, and now I'm relying solely on me again to stay healthy and cancer free.
Sadly body ... I don't trust you anymore!
I don't feel free or released from chemo, I feel kinda scared without it...

So how did my chemo-freedom come about?
In prep for our Summer 2012 "bucket list" Hawaii trip, my oncologist and I agreed I should try to boost my weakened immune system and take a break from Myeloma fighting Revlimid chemo maintenance, a month prior to the trip. The plan was to go back on when I returned.

Well, guess that wasn't so successful, as I wound up really sick in Hawaii.... (see my previous blog for details) and to add insult to injury, I grew a crazy "Spindle Cell" related mucosa tumor in my mouth... fortunately benign!
Obviously my immune system was W E A K!!! and Hawaii spells "do-over" now!

So here's my current status:
~ I continue to remain off Revlimid chemo in an attempt to build my immune system up and see how I do without any cancer treatments- take that Myeloma- I'm gonna battle you back all by myself!!!
~ Currently, my blood levels hover just below normal, but won't take that giant step to normalcy- close, but not normal
~ So I continue to remain "immune compromised", BUT- still in Remission

What does all this mean?
I've graduated from monthly oncology checks to 6 week checks
And I have escaped a fifth Bone Marrow Biopsy status check!!! ssshhhh I think my oncology team has forgotten!!!

But lest I forget my true reality... no matter what my current numbers say, no matter how I feel, I know a Multiple Myeloma cancer diagnosis  is terminal... there is no current cure... and honestly, my daily reality is knowing Myeloma cells can invade again, any day... and that's why it's kinda scary not being on any cancer fighting meds!

So-
I appreciate every day
I pretend nothing
I know my reality
I am always grateful for my fast diagnosis, spot-on treatments, and my amazing medical team
I am still in Remission, 2 years post stem cell transplant
But I am acutely aware what Remission means, vs cure
I pretend nothing
I live everyday, grateful for another day
=======================================================

Here I am celebrating life 
with the Sleek and Famous 
at
Magali Thorobred Farm, Santa Ynez, CA
with Mr Olmodavor the handsome Thoroughbred stallion
 and

Kentucky Derby winner
Mr Giacomo, who loves me :)
or does he spy my carrot!
I call this
the cancer
Winner's Circle!


PS- son Scott has his 7 month status Cystoscopy check, and he received good news! No sign of any new tumor growth! Scott's working hard and playing hard- cancer doesn't stand a chance with him!

And a shout-out to Phil Brabbs! Note my burgundy DOMINATE bracelet. Phil and I have been supporting each other throughout our Myeloma treatment journeys via our blogs. Phil's personal story is truly remarkable and a must read!
Click here to read all about his Cancer Kicker foundation! 

Thank you loyal blog follwers for caring and reading, and look for another post in October... I have a funny idea!

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



3 comments:

  1. Julie,
    Thank you for your inspiring words. When I finished my velcade maintenance after having a stem cell transplant, I was completely at sea with worry. Your words express just how I felt:

    "Scary, because a few years ago my body chemistry sabotaged and betrayed me, and "gave" me cancer, and now I'm relying solely on me again to stay healthy and cancer free.
    Sadly body ... I don't trust you anymore!
    I don't feel free or released from chemo, I feel kinda scared without it..."

    I could never have said it so eloquently. Thank you for sharing your insight.

    Wishing you a long, long, long remission.
    Love,
    Carole Leigh

    ReplyDelete
  2. Julie,
    Thanks for updating all of us with your blog.Handling the new
    normal would be hard but with your ability to live each day
    to the fullest you will certainly overcome the challenge.
    I am glad you are with your horses and especially that Scott is doing so well.
    Ron

    ReplyDelete
  3. Hi Julie,

    I apologize for posting this on your blog, I just didn’t know how else to contact you! My name is Linda and I’m the production assistant for an online health community called (www.wegohealth.com ). I came across your blog 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,

    Linda
    Production Assistant
    WEGO Health
    Lindam@wegohealth.com

    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.