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

Thursday, January 30, 2020

Sick of being Sick


Hello end of January 2020! I'm not sorry to see you go.
January and December have been yucky months for me, full of several illnesses, never ending side effects, Alzheimers challenges, sickness, illness, pain, sadness, and lousy on going realities.

Just not the same girl writing this blog, as who began writing years ago. Used to be so optimistic, so positive, so full of hope and fun fake steroid energy. Not so much anymore. Illness, sickness and lack of sleep is just wearing me down, and stealing "me".

Who I was, is certainly not who I am now. I honestly never realized how illness, being sick all the time, being around ill people all the time could change someone so much, so profoundly. I confess, all my optimism, positivity, "you can do anything" philosophy I encouraged with all my students and anyone that sought my counsel, advice, opinion, etc, was really NAIVE. I know I felt life deeply, and understood life and people's challenges deeply, and worked hard to build others up, no matter what... But oh how the saying rings too true, "you don't REALLY know, nor can you REALLY understand another person's circumstances until you have walked in their shoes". Yes I had overflowing empathy, sympathy, understanding for everyone's life circumstances and issues, but I realize how much I really did not know the life draining impact of illness, sickness and being continually sick.

We can try to understand other's situations, circumstances, life challenges and deep feelings, but we can't really understand another's situation, unless yours is the same or similar. Yes, we can generalize and "apply" our understanding of pain, hurt, sadness, depression, desperation, hopelessness, etc, from one to another, and one issue to another. We can care deeply, help and build others up, give encouragement and support, but one's own subjective pain, desperation, hopelessness, and sadness, is undeniably topic and issue specific. I always "knew" this, but KNOW it so much deeper now. My cancer challenges, my emotional pain, my sadness, my disappointments, my frustrations, my life devastations are just so awful to me, no matter how "ok" it looks on the outside. It's just so sad with what has become of me and Jim. The tragedy is incomprehensible...

In my other life... I always felt my student's issues deeply. I understood their emotions and challenges from a loving, caring, build you up, get you to your dreams perspective. But what we comprehend and understand is what we have survived, endured and coped with. It is so very specific and subjective to our individual circumstances. I suffered with the "trauma" of being a stutterer all my life, and applied my pain, insecurities, self doubts, and life lessons to everything I did. I was a better person and counselor as a result of my depth, awareness and sensitivities brought on by my personal suffering and challenges.

We all know the issues humanity is confronted with is overwhelming, tragedy is everywhere, every day. I believe no matter who you are, where you are, it's our SIMILARITIES that connect us. There's a bond, a sisterhood, brotherhood, we have, when we share the similarity of a particular pain, survival and overcoming. I can never forget the awful life experiences my students and friends shared with me. What they have endured and survived is mind boggling. My heart and head would explode with empathy and understanding when they would share. I could feel their feelings along with them. I truly could, but still, for all of us, that understanding is still limited to our own subjective experiences, beyond any empathy, sympathy we can offer.

In my little world of my awful challenges, having INCURABLE CANCER, Being on NEVER ENDING CHEMO, ALONG WITH a daily deteriorating ALZHEIMER'S HUSBAND, is a life circumstance that is just so intense, not many can really relate to. Our lives are like a living death every day. I've lost my life to everything illness. So much has been ripped away from me. We lost our dreams and life as we knew it. We've lost what we worked all our lives for. I lost a husband who was everything to everyone. We live, rather, exist, each day knowing we can't change the outcome. We cannot control or change the outcome of our situation. We just have to keep living this nightmare over and over and over again, every single day. Process that.

I know those in my circles care deeply, lovingly empathize, and try hard to understand what I am going through. But the depth of my challenges are so intense, and issue specific, no one can really know what I am confronted with, except my Myeloma buddies and Alz buddies. Is here anyone else out there who is living both? Yes, there are far more awful situations than mine, and other's far more challenged in ways I could never handle, but I'm at my breaking point daily, with all that's on my plate. I'm just so beat up from just surviving day to day. So beat up from being sick all the time. So beat up from lack of sleep. Everyone thinks I am so strong. I am not. I don't want to be strong. I don't want challenges. I just want to be who I was, who we were, and live a simple uncomplicated life. Life is too complicated for me now.

Each day, week, month, year, our circumstance hits me harder than ever because we were such an incredibly functional team. No problem seemed unsolvable years ago. We were doers, fixers, problem solvers. I could "fix" things at home and work. We both "fixed" whatever was broken, literally and figuratively. I shared my optimism and move forward philosophy everywhere. I truly believed anything could be solved or "fixed", or at least repaired...

But now...
Our situations cannot be fixed.
Myeloma is incurable, deadly
Alzheimers is incurable, deadly
Myeloma is treatable, but treated continually, non stop, or I die
Alzheimers is not treatable. It's a slow journey to death, no options.

I don't have the choices and options I once had, and that was always the core of my being. CHOICES AND OPTIONS. I don't have those anymore. Cancer, treatment and side effects have stolen my choices and options. I'm a prisoner to illness, feeling ill, being ill, feeling sick and being sick most all the time. The only relief I have is on Steroid Day. And then The Crash... the awful being sick, guaranteed feeling sick for days.... I'm just so sick of being sick :((

Yes, I'm feeling down today. Yes my dark cloud will lessen, but it's been a tough December and January with so much headcold, fever headcold, coughing, hurting illness, along with all of Jim's unsettling, tragic daily challenges, and now a bit of lousy news from my Dr appt on Tuesday:

My IGA continues to climb, around 100+ points per month. Jumped to 1000 this past blood test.
M Protein went down a spec, from .8 to .7
My Dr is concernered with the upward trend and started to talk about other chemo options, but I just can't make any changes right now, as I just can't handle any more challenges, new side effects, etc.

My recent Pet Scan revealed a new lytic lesion at the base of my skull. My Dr wants me to do a MRI for additional detail. I will do this, but don't want to do it with the contrast, as I've read the Gadolinium, or Gadavist is a concern for those with kidney issues, allergic reactions, etc. I recall reading something about Myeloma patients should avoid it due to myeloma specific issues, kidney issues, etc.

My Creatinine levels are actually good, and I never did have kidney issues, but why start now! I just don't want to add one more thing to my "worry plate", or regret that I did that plate.

Anyway, blah blah blah...
I am so sorry my blog has turned so sad, and I don't have the funny, uplifting stories I used to share.

Cancer's effect on us- great read!

Monday, January 20, 2020

First Myeloma Status Labs of 2020

Hello 1.20.20

Hi Everyone,

Today was the usual Monday Medication Madness of 40mg Dex Steroids first thing in the morning.
Then one Velcade shot in the belly jelly in the aftternoon.
Then 400mg of Cyclophosphamide chemo pills with dinner.
How's that for a Myeloma pummeling triplet cocktail, that so far has done the trick since about September 2018!! Hoping to stay on this madness for a long time, as I've got the routine down, and I can somewhat predict the weekly crash and side effects.

Yumm Yumm!

Get in there Velcade and do your thing!

I have a Dr consult in person this coming Thursday, and should have all my Myeloma status labs by then. I always silently "bet" with myself if my numbers will be around the same, or down, or up...
Not sure what I'm feeling, guessing from yesterday's labs... hmmm.... what's your guess?
I only cheated with doing half the Dex steroids back in Dec, but have been a good patient ever since. Back to "high dose" 40mg Dex weekly, so maybe my myeloma numbers are status quo, or down? I have figured out that when my WBCs are low, I get a bigger reaction from Dex, then when my WBC is higher. And I was shocked at my CBC results from yesterday!

My WBC is a shocking "high" of 3.7 (which often means I am sick, or getting sick), RBC low tho, but all my organ status labs, creatinine, calcium, etc, are in the low to normal range. How can that be?? How can this ol bod tolerate 10 years worth of continual chemo, meds, immunotherapy, etc. How long have you been in treatment, and continually on treatment?

You know those cancer articles, TV pharma commercials, poignant news features of one's loved ones being on chemo for 6, 9, etc weeks, or months, and the families are devastated with what happened, then fortunately able to celebrate treatment success... Well I do a mental gulp (sometimes a pissed snicker if I'm on my steroid crash), at the "short" treatment time mentioned,... as what I and my Myeloma buddies would do for a short treatment outcome, not to mention, being "done" with chemo!... My heart truly hurts for anyone's diagnosis, but TRY DOING 10 YEARS WORTH OF TREATMENT, not 10 months!! Try knowing your treatment is forever and endless, to "the end"... Honestly, lucky them for being able to "ring the bell" of being DONE with chemo treatment in a "short" amount of time. Ring the bell, ha, not this gal, thanks to Myeloma's incurable status. Not bitter, just facts, just reality. Sorry I keep perseverating on this, but I'm just still so surprised and shocked with my situation. This just can't be! How can I have cancer? How can I have incurable Myeloma? How can have been on weekly chemo treatments SINCE 2010!!??

Some of my Myeloma status labs will trickle in before my Thursday appointment, but some are not released until I see my Dr. But I will update this post as the lab results come in, so check back if you're curious my MM status.

All else is continued loony bin ridiculousness here... again, just can't wrap my head around how our lives became all about sickness, illness, side effects and dysfunction. Just mind bending. If you know us personally, you get this shock. But as I always say, I have so much to be grateful for, especially considering the BIG PICTURE out there, and what I read on all the myeloma social media posts. Wow, the suffering and challenges are just unreal :((

Here's to hoping your're able to work on your 2020 dreams and goals.
My top goal for 2020 is "Less is More" regarding slowly sorting thru all our 38 years of stuff... I have so few "good days" where I have the helium to do this, but thinning things out, and storing away the sentimental mementos is my top priority. It used to be that if my inner self was at peace, calm, organized and joyful, all was ok. Now, forget that LOL, it's all about the external visual. Lessening perceived visual chaos, which in turn lessens my inner chaos, and brings a sense of calm and peace to my life. Our awesome caregiver Chris moved my (finally packed up!) bins and bins and bins of Halloween and Christmas decorations out to our "storage trailer" in the back. Sadly this now "storage trailer" used to be Jim's off road toy trailer. Shows how much our life has changed, and the sad symbolism of a fun vacation trailer, becoming a storage shed :((((  Jim would be so sad if he could comprehend all this, but sadly, his Alz self just can't process our reality. He does know when I'm gone to chemo, and wanders around the house and property (with his caregiver) looking for me :(( He still tries to do horse chores, as that's the old routine embedded in his psyche. Just such a tragedy on every level for him, as he was so healthy, and so active, and should have had old age fun as an old ranch guy, just moving around slowly, but functional, picking up the horse poop, planting roses, raking the dirt, cleaning the barn, shopping for us, etc,... He loved nothing more than "doing", being busy, doing. He's just "existing" now...

We never know what's coming down the line for us. And I certainly did not anticipate the big ol train wreck we are...

This is what I had hoped for...

May your dreams continue to come true, and your life goals always be in process...

Friday, January 10, 2020

First Post on the 10s for My 10th Year of Myeloma Survival


Happy New Year!
Happy 10th year of Survival to me :))
Hello to 2020 and Blog Posts on the 10's!

Of course I had so many ideas for what I wanted to write this first post of 2020, the first post on the 10s, of my 10th year of Myeloma survival...


All those ideas are still simmering, and stewing and brewing...
Just don't want to start off 2020 with Negativity, Sadness, Frustration, Disappointments, and being Melancholy... So this post will be all about many the things I am Grateful for, within all the overwhelming unexpected life changes I have had to confront, accept and adjust to...

Yes, I have so much to be Grateful for!
Where do I begin...

I'm grateful for modern bathrooms, specifically MY bathroom
I'm grateful for toilet paper and wipes
I'm grateful my body can process in, and out, all the complex, chemical treatments I currently endure and have endured for over 10 years to survive the 10 years I have! ...

And with that... I'll be back! Because you know why...


Things I Am Grateful for this new 2020 year:

Surviving Myeloma for 10+ years with the type of life I still have

So grateful for-
Medical Science Research creating all the chemo chemicals saving my life
Scientists, Doctors, Nurses, Pharmacists, Pharma staff, All Medical Staff
My incredible Insurance that pays for all my treatments
The convenience of Kaiser treatment centers so close to me
The friendliness of most all of the staff members I encounter in person and on the phone

Goes without saying…
I am beyond beyond beyond grateful for all the Loving, Caring, Supportive, giving, helpful, helping people in my life!

Beyond grateful for my loving Family, amazing Caregivers, sweet Friends, Supporters, You, people that work for us, help us, and those that understand and empathize with our medical disaster

So grateful for all the people that create, make, process, sell, deliver all the products and services we need to stay alive and maintain the life we have

I am so grateful to be living in a country that can provide the all the Health Care available to me and others suffering with health issues

I am grateful for all the modern conveniences that make my life easier to navigate
I am grateful I have a car to get me to treatments
I am grateful for all the mechanics, technicians that make my vehicles safe and for the Auto Club that rescues me when my battery dies

I am so grateful for electricity, water, heat, and all the appliances in my home

I am grateful for all the Veterinarians that take care of my critters
I am grateful for all the people that grow hay for my horses, and for Fox Feed that delivers to my barn
I am grateful for all the companies that make and create products for all the animals we have that we rescued

I'm grateful for all our animals that give us so much love and laughs
I'm grateful I am able to still care for all of them
I am grateful for my old horses getting older with me
I am grateful for all the lives we've saved

I am grateful for all the food producers, farms, companies, businesses that create the unbelievable food choices that Americans have

I am so grateful for technology, connecting all of us together, and connecting everything together, and making my life so much easier as an incurable, immune compromised, never ending cancer patient

I am grateful for TV, as I never watched so much TV in all my life, since being a sickie
I am grateful for books, magazines, and anything I can read, and the authors that write as they do

I am so grateful I am able to grateful
I am so grateful I am able to write about what I am grateful for

I am grateful for all the years Jim and worked and worked and worked, so we are able to stay in our home, despite the complete devastation from both our awful, terrible, incurable illnesses
I am so grateful for the 35 amazing years I had as a college counselor 

I am grateful I still have a functioning brain
I am grateful I still have a functioning body, no matter how awful my daily, weekly side effects are

I am grateful for all my senses. Every single one of them are so vital to quality of life.

I am so very grateful for the beauty of nature, this earth, the sun, the sky, the moon, the stars, the animals, the trees, the flowers, the grass, every single part of nature I am so grateful for

I am grateful for all that keeps this life going that I know nothing of
I am grateful for the power of the Universe that I don’t understand, but hope to one day…

I am grateful I am still independent, and can basically do whatever I want, whenever I want, however I want, ... although I really can’t do much of anything because of daily, weekly side effects, but I am so grateful for the option that I can, if I could


Later today I have CT scan on my Head, as I've had non stop headaches for about a month now. Started with the lousy head cold I had mid December 2019, then continued and continued and continued. So I finally went to Urgent Care last Friday, and the Dr ordered the CT head scan. I know I have pre existing lesions, holes and a "hard" external tumor-lump on my head, so it will be interesting to see what the scan shows... more on that next post on the 10's!

Thank you for reading and caring as you do! Hope all is well with your 2020!

Wednesday, January 1, 2020

Hello 2020!

Happy New Year Everyone!

Oh yes, we partied it up on NYE, in our recliner chairs :((

From the Patient Columns on the Myeloma Beacon:

See you on 1.10.2020 for my first update on the 10's!

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
.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?”)


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.