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

Monday, March 30, 2020

Soooooo Many Challenges

Hello 3.30.20

Have crazy lab reports to share with you, but I didn't have time today to finish capturing the screenshots and posting because my Alzheimer's hubby has been super challenging these last few days :(( But I did make it today for my Velcade shot, along with taking the crazymaking 40mg of Dexamethasone steroids early in the morning, and later after Velcade, slamming down 8 lovely baby blue Cyclophosphamide Cytoxan capsules at 400mg. 


Promise I will share my news tomorrow 3.31.20... or perhaps I should wait til 4.1.20.... "April Fools Day", as the Universe is sure having the last laugh on my behalf and all of humanity!! Can you believe what is going on!! I marvel at how smart biology and chemistry is!! How one little virus cell can control and change the world, right! And how cancer controls our personal biochemistry within us!!! No doubt, Mother Nature is smarter than humans! Just incredible what is happening with coronavirus! Medical science and the hearts of humanity are amazing, but seriously, one little tiny cell, many tiny little cells, taking over and stopping the world! Just mind boggling!!


Thank you Matt for finding this!




Friday, March 20, 2020

Vigilance and Vindication Overload!

3.20.20

Hello Everyone!
I'm sure you're as mentally beat up as I am. I almost wasn't going to post, but I just didn't want to break my commitment to post on my symbolic numerical days. I love that I've been writing this blog for almost 10 years now, and CoronaVirus isn't gonna bring me down :))

I have so much to say, but I've probably said it all already... said it, written about it, a million times over! Simply put, this awful Virus has totally Vindicated my OCD smart sanitizing lifestyle. I wouldn't have survived all the years of Myeloma and chemo treatment's ravages on my immune system, if I hadn't cleaned and sanitized and wiped off basically every public contact surface in my life. I should have bought stock in isopropyl alcohol manufacturing companies! All the cleaning and sanitizing instructions all over the news, social media, from friends, family, public service announcements, etc, IS EXACTLY WHAT I HAVE BEEN DOING AND PREACHING for over 10 years!!! Actually for most all my adult life. I'm just a bit smarter, or have more common sense, then most. Sorry, not sorry, but it's true. All this cleaning and sanitizing and being aware of deadly Cross Contamination, is JUST PLAIN COMMON SENSE CLEANLINESS!!! And I've been doing it ever since forever with animals and working with the public.
Unbelievable the world needs to "learn" 
how to wash your hands
and how to be clean!

I'm so ahead of the curve and trending before the trends!
I used to make these personalized scented Isopropyl Alcohol sprays
for my kids and their friends waaaaay back in 2000's,
They loved them. Friends would beg me to make them a bottle!
And all this.... 
Waaaaaay before Myeloma!
And waaaaaay before CoronaV!

I made these when the kids went on Spring Break trips,
When they moved out,
When they went away to college,
And for around our house.

Wipe it all off, if it has public cooties
Wipe it off so things don't cross contaminate
Don't touch dirty public cootie surfaces directly
Don't cross contaminate things (food, surfaces, etc)
Wash Wash Wash
Clean Clean Clean
If you touch this, don't touch that
Keep your dirty paws away from your face
Don't touch public surfaces directly, think about what you touch where
Clean off, sanitize anything that comes into your house or private space
Wipe Wipe Wipe it off
Don't wear public shoes in your house
Don't wear dirty germy clothes in your house
Be super clean in your kitchen
Wipe down things that involve food, utensils, your sink, your refrig, etc
Don't cross contaminate
I practiced clean hygiene forever. That's why we had very few illness, no food poisoning, and no animal Salmonella (we had reptiles for years!), not to mention all the ranch issues. But I have always thought our Animals were cleaner than Humans LOL, as we keep everything so clean. Jim used to clean the horse arena several times a day,...


I'm beat up from this life...
From my poor hubby having seizures on Monday...
From CoronaVirus overload
From Germ transference fear overload
From trying to get normal household supplies exhaustion
Exhausted from trying to find what I need, and everything is sold out online

With all the "shelter in place" policies, I cannot believe online ordering and delivery is not the standard practice now! I'm so sad there isn't grocery delivery or Walmart grocery pick up anymore.
Doesn't that make the most sense now! All the people crowding into grocery stores, standing in lines, defeats the "social, physical distancing" we're all supposed to be doing! I am not going to stores, I am not standing in line... it's all so hypocritical and ridiculous!
How can Costco and Walmart be sold out on everything, even with all the Hoarders?!
This is just insane!

But I can't help be a little humored that is going on... Not humored by the CoronaVirus! That is truly scary. Just humored by all the conversation about how to stay clean and sanitary now. Everyone is just now doing what all us cancer patients have been doing all along to stay alive and protect ourselves from germs and illnes.
I've lived the cootie free Bubble Life, and Shelter in Place life forever now it seems... this is my life, so life has hardly changed for me and my family. I don't ever do much socially, or do much in public, or go many places since my Myeloma diagnosis, so no new adjustments for me. My homebound, protective life is nothing new :))

Found this the one time I went to CVS
before the "Shelter In Place order"





Take care, be careful, be vigilant, and feel proud how clean and protective you've been of yourself and loved ones way before CoronaVirus!





Tuesday, March 10, 2020

Thank You CoronaVirus for Bringing Awareness to GERMS and the Immune Compromised

3.10.20
Hello March
or should I say Hello March Madness :))))


Sorry, Not Sorry... but Thank You CoronaVirus for bringing awareness to Germs, and COOTIE CONTAMINATION! Finally! Awareness! Let the cleaning and sanitizing commence! What's going on now, is what SHOULD be going on all the time, everywhere, every surface, every public and private place!

Long before Myeloma, I was super conscientious of cleanliness, always sanitizing and cleaning my office and keeping our home clean and cootie free. I cared for many types of animals outside and inside our home, as well being around the public daily as a college counselor. I was always acutely aware of germ cross contamination. Ecoli, Salmonella, Norovirus, colds, flus, viruses, bacteria lurked everywhere. Germs everywhere. Germs on people, critters and food. I hated being sick when I was "well" and I hate it even more being so sick with Myeloma, chemo side effects, and always immune compromised. Being aware of potential illness is just common sense. Taking precautions to not spread germs is just common sense. So all this new awareness and hype of being clean and sanitary is just amazing to me, and so welcomed! But What was being done, rather Not Done, before CoronaVirus??? Scary to think...


I've always been shocked how "stupid" and unaware the general public is regarding how germs are spread and transferred from human to human. The dirty habits of people was always quite "disgusting" and surprising to me. My students always commented how clean, fresh and nice scented my office was. They were always thankful for the wipes and antibacterial gel I kept handy for them. I was CLEAN and SMART long before it was all over the news with CoronaV. I was the Ninja cleaner before it was Cool! As a result, I rarely got sick.

Living on a Ranch, with a constant flow of kids and animals, I always had our visitors wash up before they came in the house, had them take their dirty, public, pee and poop crusted shoes off, or put on cute disposable booties! Sure everyone thought I was OCD and overly worried about germs, but seriously, who wants gross things in your house. Think about where hands and shoes have been! Think about how INFREQUENTLY people wash up. Think about how much physical touching of things people do. Think about all the gross, rarely cleaned surfaces people touch.... Ugh, just pisses me off to recount attitudes and resentments, eye rolling and sarcastic jeering I've encountered over the years. 


So THANK YOU CoronaVirus for VINDICATING me :)) What I've been preaching and teaching forever, is all over the news and social media now. C'mon folks, really! What was going on before CoronaVirus brought attention to staying clean and trying to stay germ free! Think about all the public surfaces that are touched and not cleaned frequently. Seriously think about ALL those public surfaces everywhere that are not normally sanitized. I have always been aware of that, and used paper towels or wipes to open doors, touch handrails, elevator knobs, etc. When was the last time you sanitized your car steering wheel? Your cell phone? When was the last time you cleaned door knobs in your home, office. I was even surprised how "unsanitary" many of the surfaces were in the hospital when I was an inpatient for my Stem Cell Transplant. I often had to remind staff to wipe down certain areas. And then the staff... always inadvertently touching their face, clothes, hair, and one Dr sitting with his leg over leg, touching his shoes! OMG, finally, one appointment I pointed it out to him. He wasn't happy. Then everyone touching computers, keyboards, cell phones, fixed phones, etc., then going from patient to patient. Even if they changed gloves, they still touched things after they had their gloves on, and cross contaminated everything. No wonder people get sicker in hospitals and medical facilities. Yikes.... I can't believe I'm still alive with such a compromised immune system all the time!



And waaaaaaaaaaaaay before CoronaV, I was queen of AIR HUGS and AIR (hand) SHAKES! Again, everyone rolled eyes and thought I was OCD, but warrior here... 10 YEAR MYELOMA SURVIVOR as a result! How often do you see people NOT washing hands after using the bathroom! How often do you see people touching their body parts, then touching everything, then wanting to shake your hand. I always thought that was a stupid societal custom. And now all over the news, is all the goofy non hand shakes. Common sense people, common sense. Where has it been. And think about airplanes and airports, and all of public transportation... Restaurants, dirty menus, unsanitized tables, chairs, booths... who really know what goes on in the food prep area... Ugh, I have to stop writing about all this, as it's turning my stomach, especially with chemo crash beginning... 




So currently my Myeloma numbers are like the Stock Market! The last several months, my numbers were going up up up, and my Dr was beginning to worry, and began talking about changing treatments. With all the insanity on my homefront with my husband's Alzheimers status, I just can't take another challenge on, with changing treatments, and dealing with new side effects. Yes, I know eventually I will have to change, but I've learned over the last 10 years, my Myeloma is like a roller coaster, always fluctuating. I just don't panic about my increasing numbers, until they're in the thousands. When I was diagnosed, I was 70% Myeloma, and my IGA was over 5700. Since then, it's fluctuated as high as being over 4300. Guess I naively always think there will be a treatment out there for me, and magically there is! Each time my IGA skyrocketed, my treatment Angels showed up and my Drs found a wonderful chemo elixir for me. I am very fortunate that I respond well to meds. Yes my Myeloma is too smart and aggressive, but the amazing cell pummeling Immunotherapies and chemos eventually win over... albeit temporarily. So thank you 40mg Dexamethasone Steroids, Velcade injections and 400mg Cytoxan pills for still pounding the nasty myeloma cells since September 2018! 


And take a look at this CRAZINESS

How can my IGA drop 500 points in one month! I thought this was too crazy, so I did my labs again a few days later...

There we go, my Myeloma roller coaster! Down up, Up down. Who knows what this month's labs will reveal.

And my CBC labs... Yikes! See, this is why I've been a Cootie, Germaphobe all my life...

From a CoronaVirus post:


Back off with your nasty germs!



Ok, I'll sign off here, but I always come back to edit :))
Time to eat before the yucky, nausea chemo crash from Monday really hits me. I'm making my special old family secret recipe of high protein cottage cheese pancakes. I made them a few weeks ago when CoronaV first came out, and we laughed that some of my pancakes looked like the CoronaV cells!



Thanks for checking in and caring about my life story as you do! Hoping you are well, staying safe and being smart, so the cooooooooooties don't get you. In all seriousness, it is very scary for us immune compromised and weak immune system people. Those are the ones that are not making it, if they get sick :(( Stay well, stay clean, and be smart about being around the dirty public!





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, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12
.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.