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

Sunday, February 3, 2013

My Life in an OCD Antibacterialized Bubble!

This post is for all my friends, family, colleagues, students and people I come in contact with who don't understand my necessary obsession with sanitation and cleanliness:

Did you know- 
"Multiple Myeloma is a cancer of the immune system, of the plasma cells in the bone marrow. Plasma cells are a type of white blood cells; they are part of the body's immune system. When they are normal, plasma cells help the body fight disease and infections by producing proteins called antibodies. In Multiple Myeloma, plasma cells become abnormal... therefore compromising the immune system and compromising the body's ability to fight infections!"

Did you know-
.... "once in the active phase, Myeloma is lethal and without a known cure, with the exception of autologous, allogeneic transplants which carry a 41% mortality rate.
... " problems abound in the pathology and treatment of Myeloma, a mystifyingly disease, with survivals recorded ranging from a few months to nearly two decades.
"Conventional chemotherapy offers a median survival of 18 months to 2 years
"Newer approaches of high-dose combination chemotherapy and autologous stem cell transplant ( that's me :) have demonstrated an improved median survival of 3 to 4 years, with 20% alive at 5 years.... 
"Myeloma, in fact, presents a therapeutic enigma. It does not respond to therapy as cancers generally do. It does not exhibit a dose-response effect; remission duration and survival does not appear directly related to Myeloma cell-kill; maintenance therapy does not necessarily prolong remission ... " 

THIS POST IS FOR EVERYONE THAT THINKS I'M:
A ridiculous extreme germ-a-phob.. 
A too aware of cross-contamination, so stay away from me with your germ-cooties, psycho-freak..
A spray you down, wipe you down, antibacterialize you and your surfaces and please don't offer to shake my hand, weird jerk..

Well you know what?
I'm actually..
An IMMUNE COMPROMISED cancer survivor lucky to be still in REMISSION, still BATTLING incurable MYELOMA BLOOD CANCER, with an immune compromised immune system not able to battle germs like YOU can! 

Hello people,
Don't laugh at me for protecting my fragile health
Don't criticize me or think I should be on psych-meds for OCD
Don't roll your eyes and think I am overreacting to the Flu season or serious public health warnings about the overly virulent NOROVIRUS (extreme stomach virus)
Don't laugh at me and think I have nothing to worry about because "I look/act healthy"
Don't snicker at me for wiping down surfaces and avoiding door handles
Don't be jealous of me using delicious scented antibacterial gels and sprays; I'm happy to share! :)
And don't think ... o geezzzz Blondie relax, you are just overreacting all the time!


The reason I have to be the way I am...
IS BECAUSE I WANT TO LIVE!!!
BECAUSE I DON'T WANT TO WIND UP IN THE HOSPITAL because I was exposed to your germs!!!
BECAUSE I DON'T HAVE THE STRONG IMMUNE SYSTEM LIKE YOU, A NORMAL HEALTHY PERSON
BECAUSE MY WHITE BLOOD COUNT (and CBC's) HAVEN'T BEEN IN THE NORMAL RANGE FOR YEARS!!!
BECAUSE I HAVE SURVIVED MONTHS, YEARS OF CHEMOTHERAPY AND A LIFE THREATENING STEM CELL TRANSPLANT PROCESS
BECAUSE I HAVE to be CAUTIOUS because I HAVE TO BE... to REMAIN HEALTHY!

Hello people... I am not Normal... my body is still fighting, and I don't have the superpower immune cells you do!!!

So here's a little enlightenment about being ImmunoCompromised:
"Definition of Immunocompromised
A state in which a person's immune system is weakened or absent."

"Individuals who are immunocompromised are less capable of battling infections because of an immune response that is not properly functioning. Examples of immunocompromised people are those that are undergoing chemotherapy or radiation therapy for cancer and/or are in recovery from cancer treatments... Other conditions, such as certain cancers and genetic disorders, can also cause a person to become immunocompromised."
"Immunocompromised individuals can be prone to more serious infections and/or complications than healthy people. They are also more prone to getting opportunistic infections, which are infections that do not normally afflict healthy individuals."
"Immunocompromised patients are more susceptible to bacterial, fungal, and viral infections that healthy immune systems usually conquer. They are also susceptible to common infections. Often, the symptoms tend to be worse for them."
"There are several reasons why powerful treatments such as chemotherapy and radiation weaken the immune system.
  • These therapies break down the tissue of natural infection barriers such as the skin and covering of the gastrointestinal tract. Bacteria and fungi travel through these openings and infect the patient. Many hospital procedures such as finger sticks, bone marrow aspirations, and venipunctures (inserting a needle into a vein) can disrupt barriers put up by the immune system and allow infectious agents to invade the body.

  • Hospitalization itself may increase the risk of infection. Hospitals tend to be home to more antibiotic-resistant bacteria. This fact is of course a problem for the seriously ill, because they spend a lot of time in the hospital.

  • Chemotherapy and radiation treatments can harm or destroy white blood cells such as T-cells, B-cells, and Neutrophils -- key components of the immune system. These cells help the body recognize infecting agents that invade the body and help protect you from either getting infected or help fight off the infection.

  • Use of steroids, sometimes prescribed to patients, can weaken the immune system by affecting how the white blood cells work."


    Ok, so there you have it!
    Be nice to me
    Respect and understand my goal to live
    As long as I can
    As a semi-healthy, functional person

    I hope you never have to experience what I have
    I hope you never have to endure what I did
    I hope you never have to worry about your health as I do
    I hope you never have to be OCD by choice as I am
    I hope you always have a super strong, super healthy immune system

    And I hope this post helps you understand and appreciate the battle everyone with "their something", is struggling with and being challenged by! Where's the bleach and alcohol... bring it on!!! :)

And to complete this post, here's a wonderful excerpt from my Myeloma girlfriend's blog, summing up what goes through our minds... almost daily:

"Even though I know relapse is inevitable, it is, obviously, difficult to think of it actually happening.  In my imagination I had put it somewhere far off into the future. Relapsing was a vague vision and if I didn't think about it too much, it seemed like it just might go away. (Thank you Carole for stating so exactly, what we all silently think...)
Compelled CLarity My New Reality: Multiple Myeloma Carole Leigh 

And finally, check this out for inspiration!
great-great-grandmother-rides-again.



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

5 comments:

  1. Well said, Julie! Being immune compromised is a constant battle. I, too, am well acquainted with the antibacterial gels, wipes and products. I don't care what anyone thinks when I wipe down the grocery cart like it is covered with poison and I am really good at holding my breath when I am shopping and I hear someone sneeze or cough! Evasive shopping technique is my specialty. I have become very good at steering clear of other shoppers. I do have to admit that having a puny immune system is quite tiresome!
    Love,
    Carole Leigh

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  2. I am so thrilled with your continued success at battling this terrible disease. You can be a germ-fighter all you want. Look at you, girl. I love you and support you. Good for your Scott, too. Hugs to Jim. Ilene

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  3. Amen, amen, amen, Julie! I wipe down everything. A lifelong Catholic, I no longer attend Mass, nor do I attend the symphony, etc. Life has become so much narrower due to the fear of germs. When I fly I wear a mask and again wipe down everything and usually get sick anyhow. It's tiresome and depressing, that's for sure.

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  4. Wonderfully written. My husband still doesnt get this even though he had his auto stem cell transplant in May 2012. Im constantly trying to convence him of why he needs to be careful when he's around people and to keep germs at bay. I'm going to be reading this to him tonight.
    Maybe I can convence him that this is one of the reasons his cancer came back. LOL. He just doesnt take care of himself like he should.

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  5. I Love You!!
    You are so awesome! We definitely understand :)
    --Arlene

    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.