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

Wednesday, May 29, 2019

Life With Incurable Illnesses- Killing Myeloma, Battling Alzheimers

Hello 5.29.19

Hello End of May!
Hello Loyal Followers, Friends and New Visitors!
Hello to Processing My Life... One Day at a Time, One Challenge at a Time...

Here's my life in memes and quotes...
Then just words, my words, simple words, my thoughts, my feelings, minimalist words, just words, simple words, full of complexity...




Week # 34
40mg Dex Steroids, 2 Velcade injections, 400mg Cytoxan
10 pills in the morning, 2 shots in the afternoon, 8 pills in the evening
Still fighting
Still killing myeloma cells!



Beautiful Roses
Nourshing Rain

Silly, happy pups :)) 


Just Breathe
Let It Go
Process It
Understand It
Inhale the Good
Exhale the Bad
Eat
Drink
Smile
Be Thankful
Process It
Breathe
Let Go
Let Go of Drama
Breathe
Talk
Hold It In
Talk
Share
Let Go of It
Hold It In
Listen
Process
Analyze
Understand
Find Peacefulness
Smile
Be Grateful
Let Go Of It
Breathe
Question
Observe
Accept Your Emotions
Allow Your Feelings
Don't Fear your Passion
Fight for Your Life
Listen
Process
Breathe
Understand
Listen
Eat
Drink
Smile
Cry
Rage
Fight Forward
Exhale Pain
Inhale Peace
Observe
Let It go
Breathe
Be Thankful
Hear Nature
See the Stars at Night
Feel the Warmth of the Sun each Day
Notice the Clouds
Hear the Trees whispering in the Breeze
Hear Life All Around
Hear Life Living
Feel Your Life
Breathe
Hear the Calm
Feel the Peacefulness
Listen
Listen to Everything
Question Everything
Ask Why
Then Laugh
Then Breathe Deeply
Then Smile
Breathe Deeply
Inhale Life
Breathe in Life
Exhale
Exhale Negatives
Exhale Sadness
Exhale Disappointment
Exhale Pain
Exhale Sadness
Breathe in Goodness
Smile
Absorb
Process
Breathe
Exhale Frustrations
Exhale Expectations
Breathe
Smile
Process
Understand
Let Go
Let It Go
Listen
Inhale
Exhale
Exhale Pain
Inhale Peace
Smile
Eat
Drink
Sleep
Breathe
Hear Life Living
Observe
Feel
Process
Smile
Cry
Exhale Frustrations
Exhale Expectations
Exhale Pain
Inhale Good
Inhale Deeply
Let It Go

Breathe
Breathe in Goodness
Breathe in Life
Breathe in Your Life






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Sunday, May 19, 2019

Learning and Trying To Accept This BiPolar Rollercoaster

5.19.19

Hello Middle of May! 

"One Day at a Time",.... that's my mantra now. When I get up. When I go to sleep... One Day at a Time is what I tell myself... I don't know if I truly Felt it, Lived it, and actually Absorbed the Actuality of living one day at a time BEFORE.... But, oh boy, do I now!!!


Yes on SO MANY LEVELS, my life is now just getting through the day, one event, one challenge, one insane THING at a time. The actual act of living one day at time, dealing with and processing one event at a time, has really sunk in with me. Along with letting go of so many emotions...  I'm working so hard at simply accepting all the crazy challenges put in front of me, trying hard to compartmentalize my extreme emotions and daily life challenges. But then... I am still just "floating" by, in a crazy daze of   HOW THE !*%# did all this happen to me, us...


Can you guess what the GOOD news is?
Can you guess the BAD news?

I'll be back... life insanity calls me away...
================

Ok, I'm back... here's the GOOD NEWS:

Just look at the incredible drop in IGA!! 
Whoa! Cut in half!
Down 750 points!
Thank you 40mg Dex Steroids, 2 Velcade shots, 400mg Cytoxan!

Look at where I was Nov 2018
========================

==========================


Wow! M Protein cut in more than half !
Whoohoo! Down from a high of 2.19 in Nov 2018
========================
And also way down!
Down from 2.9 in Sept 2018


And now for BAD NEWS-
Pet Scan Results:

See those words... "significant progression", "widespread... lesions", "worsening", "significantly larger",,,,, (click on it, and it's easier to read)

And those words "overall concerning for worsening of malignant disease" and "hepatic lobes..."  (click on it, and it's easier to read)
============

Blah, Blah, Blah Bone Damage. More of this, More of that, More here, More there. Do you understand those results? I'm having a hard time wrapping my brain around all the terminology... Blah, Blah, Blah Swiss Cheese, Honey Comb bones... and I just realized "hepatic lobes" = Liver issues!! Thanks myeloma! Bone and Organ issues now...

My Dr has ordered another MRI and Xrays for me. Need to do those, haven't yet. Too much "Ridiculousness" going on here on the homefront. Will try to schedule all that tomorrow...
Blah, Blah, Blah, Myeloma Bone Damage... how about some rods and pins and metal support surgery one day... Hmmm... always wanted to be one of those "Transformers", Marvel comic characters :)) 
Maybe I'll just eat more Ice Cream. That has Calcium in it, right!

Liver MRI... with contrast... hmmm... I've read about kidney issues for myeloma patients...  can I please just get a little break on the drama, Universe!

Honestly, it just doesn't register with me unless I see it. Will have to ask to see a picture of my pictures. Then this reality of Myeloma munchin up my bones will hit me. Ooopppsss, don't want anything to "hit" me, as I'm too fragile... hello Humpty Dumpty 

And the rest of my story is pretty much like my previous posts, so I won't rehash that sad drama. I'm just trying to get by daily, holding my breath Jim and I both maintain MOBILITY! Ya know, Mobility is everything. Well not "Everything". But for my lifestyle type, I can't imagine navigating life with out Mobility. Of course, if I don't have Organ health, or if Myeloma is completely eating me up, Mobility wouldn't matter anyway. What I mean, is that with my current myeloma status, losing the ability to walk, due to extensive lesions, plasmacytomas, fractures, broken bones, etc ... yikes, that would probably do me in.... ok, this is all just so surreal, I just don't want to think about it anymore. 

Back to the land of Unicorns and Rainbows where all is fine. All's good. LOL! I'm sooooo incredibly grateful for my body's strength and ability to tolerate all the powerful myeloma treatments I'm on. I mean seriously!!! How can I be so "ok" on other levels. My WBC is low. My RBC is low. HGB is just over the line of Normal. Platelets are ok, low end of Normal. Most of my organ stats good, kidney function remarkably good. Must be all the watered down 100% Cranberry juice I drink.

But ooppsss, just spoke with the Radiology Dept for my MRI appointment... now I understand the MRI is specifically of the LIVER. Thanks myeloma... and I was just in unicorn la la land thinking Just My bones were being eaten up... more to come on this... guess I need to Google all those MRI terms better....


Hope all is well and happy in your life, and if you're a Myeloma Warrior, I hope your treatments are going well and pummeling your myeloma. Isn't it just nuts living life 24 7 with your body trying to kill you. When I feel twinges, and pains, and tweeks, I wonder what REALLY is going on inside me.

Ok, enough for now. I am grateful, yet sad. Appreciative, yet frustrated. Happy, but also mad. Trying to be light and carefree, but my heart and head is oh sooooooooooo heavy...

Thank you for checking in, reading and following my Craaaaaaaaaaazzzzzzzzzy life story. 






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Thursday, May 9, 2019

Trying to Navigate 2 Incurable Illnesses...

5.9.19
Hello May


Hello Loyal Readers...

I'm just too beat up to post... but I will, as I so appreciate your caring and interest in my journey, and your sweet comments!

Briefly...

Friday May 3, was Jim's birthday... he fell, in the kitchen, front first... 
Saturday May 4, too many challenges, too much reality, too much sadness... 
I finally committed to trying a Caregiver
I called
Monday May 6, Chris, Jim's Caregiver, Personal Assistant and "Butt-ler" began
He's awesome, and wonderful, and caring, and extremely helpful!
So grateful for him.
Timing is everything in life, right...


Monday, May 6, I had my usual 40mg Dex Steroids, 2 injections of Velcade, and 400mg Cytoxan, 8 capsules. 

Monday evening, took our beloved Abbie to the Vet. She too is not well...
See the IV fluids she's receiving here



Tuesday May 7, Full Body Pet Scan. 
Prior to, I had to follow a low glucose, low carb diet for 24 hours, then fast 8 hours prior to the Scan. My appt was at 2pm. They test my glucose level first, which was in the 80's, so I was fine. Then they inject me with a Radioactive Glucose solution which "lights up" the all the myeloma hot spots, lesions, tumors, plasmacytomas, and whatever else they are looking for. Scan went fine, but as the evening wore on I began to feel the full effects of Monday's chemo and steroids, mixed with the Radioactive Glucose solution. I had a yucky sweet taste in my mouth all night, and increasing nausea. I think the 2x shot of Velcade is causing me more nausea, on top of this solution. Yuk!

Hello double shot Velcade every Monday

Hello Pet Scan
window to my bone realities


Early Wednesday, May 8, around 5am I was suddenly awakened with an extreme "cleanse". Felt awful, exhausting, but always good to be "cleaned out", right. 
And another cleanse today.

Today, Thursday May 9, blood tests for my Monday, May 13th Dr appt. 
What an appt that will be with Myeloma status results AND Pet Scan results... 
Maybe I'll post again then with results. Dex will prop me up, and give a fake ok for a few hours.

And my CBCs, WBC result just came in... yep... 1.7 (normal = 4 - 11) 
Awesome
Don't know how I am functioning 


A friend asked me- "do I ever get to feel good"?... 
"Feel Good"... hmmm, such a deep question now. 

Can you imagine living life
Can you imagine navigating life with 2 terminal, incurable, life stealing illnesses. 
I can't, but I am. 
I used to be such an optimist
Now I am a numb realist
I compartmentalize everything
I just go through the motions of life
I still (sometimes) find joy and fun- I make myself
But with a heavy heart and dark cloud shadowing everything, always

These words-
Hope, Strength, Be Positive, Optimism, Fight, Battle, Warrior, Survive, Brave, Hero, You Can Do It, Keep Going, Have Faith, Celebrate, Be Happy... 
Words I used to be able to relate to, feel in my core... But not so much any more. I am so detached from myself now. I am so numb. I have to be, just to get from one task to the other, and through one day to another. 

I just do what I have to do, because it is the Right Thing To Do. I Just Do. Just Do It, whatever the "Do" is...

This is so not me, the me I used to know and be. My "me" is so depleted, so sad, so in shock. 
It will not all be ok. 
It will not "get back to normal"
It is just a terrible tragedy on all levels
A sadness beyond what I ever expected in my life
My heart aches for all those suffering with body and life betrayal out of their control

Thank you for caring as you do, and reading about my life





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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.