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?
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!
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."
"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
"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:
And finally, check this out for inspiration!
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
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!ReplyDelete
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. IleneReplyDelete
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.ReplyDelete
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.ReplyDelete
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.
I Love You!!ReplyDelete
You are so awesome! We definitely understand :)