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

Saturday, August 15, 2015

Reality Check


C = CHALLENGING every day
N = NO!! Not me!!

**I wrote this “essay” a few weeks ago, and then never posted it on one of the “5’s” as July/August has been so bipolar for me with some really awful days, alternating with some ok days, which gives me false hope… then boom!, the angry volcano sabotages me again, at the most inopportune times! It’s really getting ridiculous! So anyway… here’s my recent ramblings:

Myeloma is a cancer that never ends, until the end. I know that’s a difficult concept for most people to wrap their head’s around, as most think about cancer treatments as finite, as a temporary interruption in life, then you move on, and you get back to “normal”, cancer free. Those of us battling myeloma, will battle forever. There is no “ok take some chemo, get that stem cell transplant, reach remission, and cancer’s gone”, as in gone forever. Nope, Myeloma is never gone. We treat, retreat and continue to treat, battling the battle of the unending war. We live each day wondering if the next day will be worse, or if the current treatments will stop being effective, or if we move the wrong way our bones may break, or we’ll catch a dreaded bug, virus, bacterial infection that will compromise our already compromised immune system, and well… that there could be the end of the story…
Seriously friends, I am really trying to continue to be my optimistic self. And I am really trying to maintain some semblance of “normalcy” in my life… but it’s really really challenging. After my volcanic freeway near disaster (previous post), I had a terrible week with awful debilitating back pain, pure exhaustion fatigue, a really yucky steroid crash, and yes you guessed it, lots of time spent with "Porcelain John". I really thought this could be the “beginning of the end”, and myeloma had moved into my bones. See in time, myeloma eats away at our bones and we wind up with “honeycomb” style bones, hence Multiple in the name Multiple Myeloma. Thankfully, the horrible back pain is better now, and have a skeletal scan scheduled to survey my bone status…

Times like this, I begin to question what is left of my daily quality of life. What really do I have to look forward to? Each chemo/steroid cycle is different. Side effects vary day to day, week to week, month to month. The lack of physical/biological “predictability” in my life causes me to not be able to do much at all anymore. I make plans and hope to attend. I schedule events and hope for the best. I make plans, hoping to attend, then cancel. But most of the time, reality is... plans are cancelled. And honestly, I rarely feel good enough to do much of anything anymore anyway. The optimistic helium has left my once colorful balloons. Such a sad confession for me :(
This 5 year anniversary truly is a milestone for me, and I am eternally grateful and thrilled I’ve survived Myeloma for 5.5 years! Make no mistake about my gratefulness and appreciation of my survival success! I am fascinated with my survival actually, as I read so much about myeloma and other comrades’ circumstances. But my quality of life kinda stinks most of the time. Honestly, I must be honest with my reality. That’s just who I am. “Hope” is always associated with cancer and is an over-used cancer icon. And yes I always “hope” for the best with each new day, but my daily reality slams me in the face as my daily life is so unpredictable. Not one's “normal” unpredictableness of life, but the fact that I am so controlled by my body’s physiology. Prior to my cancer diagnosis, I never really paid a ton of attention to my body. It did what it was supposed to do, and I was always focused more intellectually, then physically. As long as I could be me, and do my "me things", all was good. 
Plans, planning, and forward destinations are what most people’s lives are about. Everyone is always planning for something. It's our human nature to make plans, commit to plans, do those plans. Me, I plan and hope for the best. I plan and unplan. Plan and cancel. Fatigue and GI unrest is so unnerving. My system is so very different now. What was once taken for granted, is feared. I marvel now at the “normal” person’s life, and my own pre-myeloma life. One just does… and I just did whatever. I Planned and Did whatever, whenever, not consumed in the “What If” I now must take into consideration always.

And the Fatigue! Ugh! FATIGUE is so disabling. I have less and less energy all the time. Never quite understood "unenergized" people before, as I always pushed and pushed myself with everything I did. When I was “tired” or did too much, I still pushed forward. Action, Achievement oriented was me! I never really understood those that didn’t push forward, didn’t get up and go, didn’t get motivated and do life, do their goals, or work on their challenges. I was always activity oriented in so many ways. Laziness, "couch potato" status was never associated with me.

But cancer/chemo related fatigue is so different than lack of motivation, tiredness, laziness.  One’s body feels laden with bricks. Your mind may be alive and excited to do things, but your body is dragging a ball and chain, everywhere, all the time. I’ve always been an active, playful optimistic do-er. Mentally and physically I’ve always felt so alive! I love the outdoors and all my nature-related activities. I love interacting with interesting people and stimulating, energizing events. I love creating and making a difference.  But now, thank you to cancer and treatments, I find I have so little energy to do anything, and even pushing myself doesn’t feel good any more.

All this makes me sad for what my life has become. I had so many ideas, goals, plans, dreams for the 2nd half of my life. I’ve had such a wonderful rewarding fulfilling career as a college counselor, helping others realize their academic dreams and life goals. I know I’ve made a difference in many many lives, and I’ve accomplished a lot in my own life. I am proud of who I am, and what I have achieved. I’ve overcome other challenges in my life (perhaps I will tell that story in another post), and was looking forward to my 2nd half of life goals.  My plan was to continue to “rescue” others, but outside and beyond the college environment. I always dreamed of creating some sort of abused animal, abused kids rescue organization. Or just volunteering at someone else’s rescue. Helping animals, helping kids with their 2nd chance. Continuing to enlighten, empower, encourage, promote psychological healing, facilitate health and happiness for others, as I had always felt so blessed and fortunate in my life. I wanted to share my eternal optimism, hope, passions, enthusiasms, encouraging others that dreams really can come true if you commit and work hard. Push forward. Assess one’s self and always be aware. Move forward, Don’t Be a Victim. Always learn from the past. Ask why. Move forward positively. Grow. Look in the mirror and question. Move forward always. Create, laugh, smile, listen, heal, share, give. 

But I am realizing this will not be possible. Myeloma has stolen and rearranged my plans and dreams. Don’t be upset with me stating this reality. It’s a fact. Cancer changes everything. Mentally and Physically. Try as might, push as I used to, I am not who I was 6, 7 years ago… and I will never be that person again. I will never have the super energizer bunny endless battery I used to. No I am not depressed. No I am not despondent. No I am not whining. I’m just stating My physical facts, and facts associated with an Incurable cancer diagnosis. Fatigue and cancer/chemo side effects change a life. And I am saddled with chemo/steroid treatments for life. Myeloma is so invisible, that most who are around me physically, or see me out and about, or hear of me, think that I’m in remission, or things are ok, or will get better, or fixed, or cured. NOOOOOOOOOOOOO… that is NOT the nature of Myeloma cancer.

So where does this bring me? To the reality of my circumstances. To the reality that my life has changed and will never ever ever be close to what it was before cancer. There’s no going back to the ol Julie. This is my new normal that feels so Abnormal. But I’m a realist and a pragmatist. I like living real, so I’m telling you what’s REAL to me. I’m pooped out friends. I have so little energy. Even on steroid prop up days I don’t have crazy roid-rage energy like I’ve had previously. I’m realizing as my myeloma numbers increase, and my immune system decreases, even steroids don’t give me the accelerated prop up they used to do.
I’ve even experimented with splitting my weekly 20mg dose into 10mg, 2 days, as the crash was just so awful with the full 20mg shocking my system. Plus, splitting the dose also allows me to plan and attempt at least 2 days of possible activities outside my house. This is another example of how my body has changed and weakened. During initial treatments, I did 40mg of steroids, 4 days on, 4 days off. I must have been such a sickie, as I don’t recall feeling quite as yucky as I do now. Or I just pushed forward too much then, all the time, trying to ignore (deny?) my cancer diagnosis, and just continued (pretended) to be me. Which reminds me of a funny story back then… Well, next time… this post is getting way too long!!! 

So I'll end this post on a positive note, as I did finally make it out of the house Saturday night, after days and days of feeling yucky and spending too much time you know where... But can you believe this... just 45 minutes before we were going to leave, those stupid telltale GI rumblings began. And I had thought I was safe and in the clear. Well as my life has become, I quickly contacted  those we were going with, and let them know what happened and where I was going to be for who knows how long... and yes, when I thought the evil volcano's lava was done spewing, I downed swigs of Imodium to get me thru the event. Shheesshh this is just crazy. And could I eat at the event... NO! But I went!!!

Thanks Kristin for creating this cute collage of us :) Loove you!!!
Yes, that's an "air kiss"! No human contact for me

 And the irony of my life now, is that I am surrounded in GI maintenance! My daughter's 18yr old cat (shelter rescue kitten 1997), is now incontinent and in diapers! Poor guy, mentally he's all there, but his body is sabotaging him. (Ah, the parallels in life!) He's always been disabled, with a cat form of hindquarter-palsy, but old age has now caught up with him and navigating the litter box is too challenging for him. He tried for years, but his back legs just slip out from under him. But the last several months his slipping and sliding escalated, and it was just pee all over the "cat castle room". So I made the executive decision to try doggie diapers for him! So far it's working out well, and he seems calmer, cleaner, and he purrs up a storm when I change him. I actually had scheduled, rescheduled, and ultimately cancelled several euthanasia appointments as now he's too "ok" to make "that decision". Am I looking at my future LOL?

But this is where I draw the line for me and my future... No Diapers For Me... Nope!...No Way!!

I have blood tests this week, and my monthly check on Aug 24... so we'll see what's up. Enjoy the rest of your summer, and play and laugh, travel to beautiful places, go out and about, savor special moments, enjoy everything, eat, laugh, relax, dream, do things, and bask in the sunshine and moonlight!

Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!

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.