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

Sunday, September 29, 2019

Grateful and Amazed!


How are we at 9.29.19 !
How is it the end of September already!

How can it be that I am only 3 months away from my 10 year life changing Myeloma diagnosis!
I wasn't supposed to be here still!!
How am I still here and as "Ok" as I am?!
How is it my body is strong enough to battle Myeloma for over 10 years now?
How is it my body can withstand all the powerful chemo chemicals I have pummeled it with?
How is it I am able to handle all this physiologically and psychologically?
How is it I am still here?

Daily, I am amazed, surprised, shocked, I am still HERE...
I am so grateful I am!
I think about so many things that have contributed to my survival. But who knows what has really saved my life...

Chemo for sure!
Genetics on some level?
Previous "good health"?
Healthy lifestyle?
Low stress? Noooo!!! LOL... I have way too much stress!

One thing I know for sure, is that I am very very very careful with not getting sick, and I de-cootie everything around and near me, humans especially! Animals I don't worry as much about!

How have I survived this long WITH MY BODY TRYING TO KILL ME DAILY!
Cancer, especially Myeloma, is a very powerful mutating enemy. How can I still be as alive as I am, with these killer cells permeating my entire self? Seriously, my entire physiological being!
Would be so fascinating to "really know" what is going on inside me on a bio-chem, cellular level. You know those high tech medical cameras used for surgeries? Or other medical evaluation tools that can look inside us, or those computer reenactments, like on the TV show "Monsters Inside Me"... Wouldn't it be incredible to be able to see our cells actually mutating and morphing, and actually see how Myeloma grows or invades our healthy cells? Well maybe not everyone would like to see this, but I sure would :))

I know how I'm still alive...
Must be my amazing eating habits I developed AFTER my Myeloma diagnosis... aahhahahaa... I'm on the "See-Food" Diet ;))  I See It, and if it appeals to me I eat it :)) Anything goes on Dex Steroid Day LOL. Crash days... ugh... minimal everything, just trying to hydrate and eat something that won't make me more nauseated. When people ask me my "secret to my success" , or how I'm not "steroid-bloated-fat", I reply... "eat anything you want, anything in moderation". Balance, nothing extreme. Some days Broccoli, some days Ice Cream. But in all seriousness, I do eat healthy, but I don't do supplements, or trendy diets or current fad ingredients. I don't do daily meat/fish, yet I do focus on Protein, as I was mostly Vegetarian BEFORE my Myeloma diagnosis. Now I do a lot of "Premier Protein Shakes" with my pills daily. Often eggs, cottage cheese, cheese, yogurt, etc. Lots of watered down pure Cranberry juice, And I do like breads, but I control myself on those, as on steroid days I could eat a whole loaf of warm Cinnamon or Lemon Bread without blinking, but I don't allow myself... I don't do a lot of fresh fruits or veggies, as I am very very cautious about bacterial contamination in Fresh things. I mainly do frozen cooked things. With an extra radiation zap! So who knows what is keeping me alive, but I'll take it...

Chemo Steroid Day a few weeks ago

Did This After my weekly blood tests
Gotta sustain strong blood, right :)) 

And while updating this post, my Labs from earlier today came in, and they just blow me away how "good" they are. Well not GOOD for the HEALTHY person, but "Good" for me! All my organ stats good. WBC always low in the 2's unfortunately, RBC low, but most all the others Near normal! Creatinine (good) low. And shockingly my Beta2Microglobulin came in... still in the NORMAL range! Wow! I'm so shocked. Guess me and 40mg Dex steroids, Velcade and Cyclophosphamide are a great Myeloma Killing Team! Insane how I do ok on powerful chemicals. I've been on this triplet for a Whole Year Now!!! Wow!! And on chemo, immunotherapies for almost 10 years now. Whew!

I have a phone appointment with my Dr on Thursday, and I should have my Important Myeloma Labs back by then. Perhaps I will add them to this post, or wait until my next On The 9's post. Check back, I may surprise you :))

Tell me your story...
I know there are so many amazing survivors out there, with incredible stories too! I'd love to hear how you are, and what treatment (or not) you're on :))

Thanks for checking in and caring as you do!

Thursday, September 19, 2019

9.19.19 ... 9.9 Years and Counting Towards 10


The moon and the moonlight has been so beautiful these past nights. Actually all summer long, the full moon has been stunning. Glowing, intense, alive. There's something about summer nights that really affects me. Energizing and Renewing me. The peacefulness of night, the calm of the end of another day. The hint of the night's cool stillness coming, stars sparkling, twinkling mysteriously in the sky. The crickets clicking, the owls hooting, the night birds chirping, as they settle in the oak trees for the night. Moonbeams shining down on the horses, as they relax from the hot day of waring with biting flies. The moon, a magical flashlight from the heavens, bathing everything in a soft glitter. I love the warmth of summer nights, and soon, the crispness of summer ebbing into fall. I contemplate another day battled, another day survived. Giving me hope, but also giving me sadness.

Every night, after the challenges of the day, I "escort" the 3 little doggies outside for their nightly pee.  They're so funny how they won't "do their business" without me actually walking out with them.  But this is how I get to see and feel the magic of night. This is how I get to see and feel the moon, that most miss, by going to bed early. My nightly routine has become me putting Jim to bed, sometimes easy, sometimes an ordeal... more an ordeal when I am not well from weekly chemo side effects. You know that feeling when you Just Want To Be In Bed.... Like Now! And you don't want to deal with Any Thing Else? That's my Tuesday and Wednesday nights. The yucky side effects creeping in, dragging me down, sucking me into awfulness. Nausea, achyness, swollen, bloat, that metallic taste in my mouth, headachy. That over-all chemo crash yuckiness, the punched in the gut, I might get "sick" feeling,... but when I'm outside, no matter how awful I feel, the moon and the beauty of the night, somehow replenishes my spirit and gives me hope to move forward to yet another day.

But as serene and energizing and peaceful this can be, it also triggers sadness in me. A sadness some may find selfish, but it's a profound loss type sadness. Being outside at night, especially on warm, moonlit summer nights, reminds me of days gone by... summer nights full of life, fun, laughter. Summer moonlit horseback rides, summers full of health, happiness, and a sense of carefree that only youth and health allow. I love these moonlit nights, but they make me sad now. I feel so much loss. I am so aware of what I put off, of what I didn't do, of what I didn't accomplish... that now, I'll never be able to do. Don't get mad at me for saying "never". I have to accept my fate. Our fate. Our body betrayals. Being outside at night slams my realities in my face. The beauty of the night, of the moon, only intensifies my losses. Yes, I have so much to be grateful for, but summer nights make me so sad, so aware of what can never be again...

I always look up to the heavens, to the night sky, to the moon and stars and cry out, laugh out... WHY? WHY me? WHY us? How come? How did two people wind up so sabotaged? 2 incurable, terminal illnesses at the same time. I know, I know. The world is full of unfair stories. Everyone has challenges. Everyone has mountains to climb. Rare is it the person or family that plans, and those plans, dreams come true. Most stories are of unrealized dreams, of deep sadness and loss. I know, I know, I am so very "lucky" in so many ways... but I hurt deep inside my core. I am sad. I am frustrated. I am devastated for our losses. For what could have been, that cannot be now. Warm summer nights remind me of what was, what could have been. What should have been... 

The doggies circle around me, sensing something. They tentatively lick my leg, or hand. Their tails wag in happiness. They have no idea my sadness. Neither do the horses. They have no idea how I miss those warm summer nights with them, hearing their barefoot hoofs softly, silently impact the cooling dusty earth beneath them. How I miss the breeze whispering through their manes, where I hold the reins. I miss the sweet scent of horse sweat under my saddle. The owls hoot, the night birds quietly chirp, the crickets click, and the horses swish their tails, while scratching and grooming each other, before finding that perfect spot to lay down for the night. They have no idea my sadness. They have no idea how I miss them, even though they are right there. The stars sparkle and wink, the moon shines brighter, lighter...  I pull myself together... I force acceptance on myself. I shake my head, but I can't shake the "Why"... But I am grateful, no matter how sad I am. I am grateful for the life we still have, and the miracle that I am still here, 9.9 years after my myeloma diagnosis. I am still here. I am still here...

Monday, September 9, 2019

Crazy Times, Crazy Lab Results, Crazy Stress, Crazy Myeloma, but GOOD News

Hellooooooo 9.9.19

It's crazy Treatment Day, with a side of  Roids!
Yes, it's Monday Medical Madness Day with 40mg Dexamethasone Steroids, so I'm flying high and wanting to have fun, in all this crazy illness insanity between me and my hubby!

I 'll detail my current Myeloma status labs below, after my Velcade appointment. I do screenshots from the Kaiser website, then download, then upload, and hope to find time with all my hubby's "demands" LOL!!! It's like I have a 180 pound Toddler, who wants to follow me everywhere and try to talk about things, but it's mostly "nonsense" coming out of his mouth :(( But I can read his mind after 39 years, so I figure out what he's trying to convey. So so tragic. Losing mental functionality is so awful... but all this stupid cancer stuff is too. I just can't wrap my head around both our terminal, incurable illnesses. But I'm doing better now, not having the intense meltdowns I did a few months ago. Acceptance and moving forward daily, is key to survival...

I used to love to write my blogs late a night, when the house was quiet, and he was asleep in his chair, or in bed, the doggies and all the critters sleeping, while I had the windows open, listening to the summer breeze, crickets and the hoot owls hooting... so peaceful, so serene...

NOW... omg, I NEVER get any time to myself... but that's another story perhaps for a different post.

So coming later later later....
Screenshots below :))

M Protein
Beta2 Microglobulin
CBC stats
Organ function stats

And you know what... the results are "shockingly" ok considering all the STRESSSSSSS, super random eating I do, and all the non stop, I never get to rest, never have time to be a "cancer patient" lifestyle I have here. Except on days 2, 3, 4 after Velcade, Dex, Cytoxan, I do feel kinda "gross", so I do sometimes, just have to sit and feel awful.... BUT NOT TODAY, THANK YOU 40mg DexaMETHasone :))


M Protein still Abnormal
But down points every month
Was over 1.5 earlier this year
And was 4.5 at Diagnosis, Dec 2009
Right in the middle!

So grateful my Kidney function is still good! 

Can't believe my IGA is still coming down
even after being on this triplet of
40mg Dex, Velcade, 800mg Cytoxan for almost a year now!
But I'll take the results, 
even though they are outside of the normal range

Not bad, and hoping it stays in the Normal range,
although at the high end

Thank you for checking in, and caring about my roller coaster life.
Hoping you are doing well if you are a myeloma buddy, and your treatments are effective, healing, and manageable.
If you're friends, family or happily not touched by all this medical insanity, I hope you are having a wonderful end of your summer, and all is good with you and yours!
There cur­rently are more than 300 clin­i­cal trials ongoing around the world that are investigating treat­ments for multiple myeloma and looking for patient par­tic­i­pants. Most of these trials are exploring new myeloma ther­a­pies that have not yet been approved for use outside of clin­i­cal trials, and many of these “investigational” ther­a­pies, as they often are called, have the poten­tial to be extremely effective.

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.