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

Saturday, February 6, 2016

Results, Adventures, Challenges, Grateful

Hello February!


So every time I finish writing a blog, I think Ok, that sums it up, I sure won't have much to say when it comes time for the next on the "6's" date to post! Well, I'm wrong on that! So much seems to happen between my 6's. Since my last post, I've found out the results to my January 4, 2016 Bone Marrow Biopsy (see below). I've had several occasions/invitations to share my myeloma story (one big event I'm keeping secret for now :) ... And more and more, I am FORCED to recognize and accept how my cancer treatments and medical status has completely changed my life, and how my situation is preventing me from "functioning" anywhere near how I used to. So I made a phone call..

Saddle up. Here we go with my updates!

February brings the start of a new college semester. "Normally" I would have been involved in so many college related events and activities my head would be spinning! But nope, not now. I haven't set foot on campus since late October 2015. This is really huge for me and it's so weird for me trying to accept this "not going into my office" any time soon, or (maybe) ever again concept. Ouch! That's hard to write. Being a college counselor has been my whole life, beyond my kids and family life. The reality of my weekly IV chemo treatments push me to accept and mentally process that those diagnosed with incurable/terminal cancer can, should and do consider disability or retirement. Ouch again. That's such a challenging concept for me, but a concept I must now consider...
So I made a phone call...

Life's forks in everyone's road fascinates me. Always has. The choices, decisions, outcomes and adventures are never ending for any of us. Ever. Often exciting and rewarding. Or sadly tragic and too challenging. I used to present this to my students and classes: "If we were all in group therapy together and asked to write down our "issues" on a piece of paper, fold it up, toss it into a basket, then swirl the basket around, then we'd all have the choice to pick a random "issue" out, or pick out our own... Which Would You Pick?!" 
I pose this question to people who think my cancer situation is so awful, as they just can't wrap their mind around an incurable cancer diagnosis. So I ask them to reflect on their own life's challenges, or those of others they know. Would they trade issues? Keep their own? Would I trade cancer for their life challenges? It's all so relative and truly, it's all in what we get used to and learn to adapt to. I've had a really hard time accepting my cancer diagnosis and status. No lie. I still think it will "magically" change.

Yes, I am always thinking about what has happened to me and why, and how come, and no fair, and shheesshh can I give "it" back. But if given the "choice, would I "trade" my circumstances for another's? Would you? Could you handle mine, and me, yours? Crazy how we can "get used" to our tragedies and challenges, and "learn" to adapt, cope, accept and move forward. Strange how I am overwhelmed by other's medical situations, but mine, yep it's mine, so one foot in front of the other, every hour, every day, every month. Push forward always. Being the optimist I have always been, I forever seek the positive in the negative, always looking for the "silver lining", for "the good" in "the bad".  So I can't help but be humored at the many "good" things and interesting "adventures" that have come out my diagnosis and treatments... Case in point:


As you know from my previous posts, Kyprolis is currently my "elixir" and best friend, gobbling up myeloma and giving me renewed hope for additional life! Through a special family friend, I was introduced to PR staff at Amgen. They kindly were interested in hearing my myeloma story and I was of course happy to share and give my endless thanks. My cancer journey IS fascinating. NOT because it's "my" story, but because of WHAT so "randomly" happened to an otherwise healthy body, and how all my excellent medical care and treatments SAVED A LIFE! As awful and deadly as myeloma is, cancer is mysterious and fascinating. Why it happens, how it happens, where it happens, to whom it happens. So what a wonderful opportunity it was to be invited to share how much I appreciate all the brilliant medical pharmaceutical researchers, scientists, developers, as well as the entire Amgen staff that helped create and produce the life saving "potion" that is currently saving my life, and battling myeloma back!

I only had a tiny window of opportunity in terms of WHEN I could "safely" get on the freeway for the drive out there, and it happened to be a beautiful day for a drive. I felt so fortunate to be able to do what I was doing on so many different levels! Here I am, 6 years into my myeloma diagnosis, having been through initial chemo treatments, a Stem Cell Transplant, remission with maintenance meds for a few years, and now, after becoming "refractory" to Revlimid, Kyprolis is successfully eating up myeloma, and saving my life!!! Seriously, how lucky am I! So of course I want to share my story far and wide, to help anyone that could benefit from hearing about my journey, and to thank those that have had a part in saving my life!


We look like college students here, right?! Girl Power!!! Well actually there were several men in the meeting, but they had to dash off quickly for another meeting and missed this great photo-op! THANK YOU TO EVERYONE at Amgen that took interest in my story and cared as you did to hear what I had to say about how Kyprolis and Amgen is currently saving my life!! I had a wonderful time seeing where my best friend Kyprolis is produced and briefly getting to know all of you and share how your careers are saving my life! Thank you endlessly for caring about my story!


So that brings me to my current stats and how Kyprolis really is making a HUGE difference in my life! Yes, I know... feel free to tell me "you told me so" over and over. How I should have ditched Revlimid sooner and been braver sooner, and switched chemos sooner. Ok ok, I've learned my lesson well. I should have taken my escalating IgA and M Protein more seriously, sooner. But as I've said before, I'm not the bravest cowgirl on this trailride of life! For real, side effects are yucky and scary. Often the "known bad" is preferable to the "unknown" possible good, even when that's not the smartest choice. And make no mistake, I still have very yucky side effects! Unpredictable, sudden, where'd that come from GI stuff, neuropathy, weird swelling, dizziness, headaches, breathlessness, disabling exhaustion and fatigue, etc etc etc, all which keep me home-bound for most of the week.

My Kyprolis infusions are Mondays and Tuesdays, 3 weeks in a row. I then "crash" on Wednesdays and Thursdays. Begin to feel a bit better on Fridays, little bit better Saturdays and ok on Sundays. Then It Starts All Over Again, to Infinity. So yes my numbers are remarkably better, and I am eternally grateful, but my quality of life hasn't changed much. I'm still the "limited cancer patient" I've been for over 6 years now. Not complaining! Just stating facts! Ok, here's my happy numbers:

WBC's = 2.7 (low= why I feel so fatigued, immune compromised) 
4 - 11 = normal range
RBC = 3.7 (low = weak, fatigued, dizzy, oxygen challenged) 
4.20 - 5.40 = normal range
M-Protein = I'm "abnormal", but not a quantifiable number 
normal/remission = Zero
IgA = 432! Whoa!Amazing!
70 - 400 = normal range
ANC = 1.7 (was a bit higher previous tests)
1.8 - 7.7 = normal range
Platelets = 159 
130 - 400 = normal range

Hello Myeloma! Did you notice... Kyprolis is WINNING!!! :)

And for the amazing finale... my most recent Bone Marrow Biopsy, #6 of course for 2016 for year #6- the results are: only 2-10% cancerous plasma cells! WhooHoo!!! Take that stupid myeloma! Get out of my cells, get out of my life, just die off and let me live!!!
To give perspective, I was 60-70% cancer at diagnosis December 2009, 0 after Stem Cell Transplant summer 2010, and 15% September 2013 when I came out of Remission. 

So even though I am still "cancerous" and myeloma is incurable, and I still have active cancer cells floating through my blood... I'll take these numbers! 


So on the few ok "hours" (not entire days) I have, I infuse mental helium into my exhausted spirit and body, and try to get out of the house (when I can) for something other than the chemo lab and doctor appointments. 

After my "good news" and while still on steroids,
I treated myself to some PROTEIN! 
Bit me back later, but fun at the time! 

My sweet friend and avid supporter Susan and I having a Tea Party!
Thank you Susan for "hating" my bad numbers
and celebrating my good numbers!
I wound up dizzy and with a crazy headache, but we had a lovely time
catching up and celebrating life! 
Thank you for all your support and caring Susan!

No I didn't eat all this! Myeloma won't let me! 
Food always seems to look so good, 
better on the plate than in the tummy for me. 


I always feel I should be doing so much more than I do
but I just can't.
My body won't let me...

 My daughter chauffeur at chemo with me 

ahahahaa!!! Daughter and Son!!!!

Having fun at my Kyprolis infusion 
with the options on my new phone! 

 Stopped to get pet supplies one day
and this guy called out to me to rescue him! 
I just love betta fish, but haven't "allowed" myself 
any additional chores.
But I'm such a softie when it comes to animals
so home he came with me :)

6
6

And life marches forward. Monday Tuesday, Monday Tuesday, Monday Tuesday.
Blood tests every week for status updates to make sure I am strong enough for the Kyprolis infusions. So far, so good. I'm proud of my organs for being able to withstand all these intense chemical treatments. I try to hydrate all the time, eat well most of the time, and I am forever grateful for all the amazing medical care I have received and continue to receive. I truly live my life one day at a time, one chemo appointment at a time. Blood test to blood test. Breathing in monthly results to monthly results. My life status, prognosis, strength to move forward, and whether myeloma or I am winning, always revealed through my monthly blood work. I move forward with hope and optimism, still not believing my circumstances, yet walking the walk as a lifetime cancer patient. This is my life.



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



Saturday, January 16, 2016

Reality Check 16

Hello 1.16.16

So I was thinking about TIME the other day. Ha! I think about time all the time.

I think about how much time has passed in my life already.
I think about how I used to think I had "forever". (Didn't we all?!)
I think about the weird timing of so many things in my life. Crazy stuff!
I think about my perception of time before cancer entered my life and before Myeloma became one of my (unwanted) vocabulary words.
I think about the term "Quality Time" in a very different way since diagnosis.
I think about how much time I "may" have left.
I think about how much time I "might" have left to do things I want to do before my body (further) fails me.
I think about how much time I have before Myeloma leaves me no options.

I've been thinking about all of this (more) as it's a new year, another year surviving, yet battling Myeloma and also because I read so many stories online about how many of my Myeloma peers have run out of time. They don't have any more time. The death rate of Myeloma is real. Myeloma is vicious, unpredictable, unbiased, incurable and can steal our options in an instant. 6 years is a huge accomplishment in the Myeloma world. But it's also scary. 6 years of how many, might I have? It hits me: The longer I survive, the less time I actually have...

I read blogs. I read articles. I read Myeloma support group posts. I read Myeloma research. I read oncology and blood cancer websites. I read about the latest studies and new medications. I am so thankful for all the brilliant scientists continually researching options for us cancer patients. I read about Myeloma continually. I am fascinated, yet horrified. I am shocked, still stunned, yet accepting of my situation. I realize more and more each day, month, year, I really don't have the choices I used to think I have.

Cancer's reality "sinks in" more each year.

Myeloma isn't a purchase I changed my mind about that I can return to a store. "Whoops, no thank you. I don't like you anymore. I'm done with you. You don't fit into my life. I'm returning you, you my Myeloma diagnosis". Ya right. Not an option. Not possible. Myeloma is me now. I used to tell my students "make your "monsters" your friends". Don't run. Confront and deal with your issues. Don't try to control what you cannot control. Be aware. Let it go. Now I must practice what I taught. It's really hard to digest all this. Even after 6 years. I always laughed at the "My" in Myeloma. I am Myeloma, and Myeloma is me.


I could link dozens and dozens of articles here. I could site dozens and dozens, hundreds, of amazing blogs here that tug, rip at my heart, and ram reality home to me and other Myeloma patients. Read the blogs I have linked to the right (below). Read the links within the links within the links of these blogs. Read the stories. Read everyone's reality. Myeloma permanently, indelibly changes lives. There's no going back. There's no telling Myeloma to go away. Or to surgically remove it. Myeloma is systemic. It invades our bodies. Permeates everything as it travels, courses through our blood stream, through our bodies, turning our bones into honeycomb lesions, cracking, crumbling, breaking once strong bones. Myeloma is stealthy, conniving and devious. Medications stop working eventually. Organs become exhausted after being constantly bombarded with never ending treatment chemicals. Germs invade. Our bodies become too compromised. Myeloma kills.


Make NO mistake. I am deeply grateful. Revlimid, Dexamethasone, Cytoxan, Melphalan, Revlimid again, Dexamethasone again, have all saved my life. Kyprolis and Dex are now currently, continuing to save my life. You are my elixir. I am in awe of these chemicals coursing through my veins, doing their chemical medical magic. I am fascinated and deeply appreciative. But it's hit me lately. How many medications I have "used up". How many more will work for me, until my options run out... It hits me in the chemo infusion lab, where I see patients (possibly) "sicker" than me, who may not be responding to their chemo medications as well as I am. That will be me one day. One day, I will run out of options. One day. But right now, thankfully, Kyprolis is magic for me.

This new Monday, Tuesday ritual of going to the chemo infusion lab is so surreal, yet so very real. The staff is amazing. They work so hard. They care so deeply. It's not "just a job" to them. They hook us up to our life-saving chemicals. Check, hang, recheck. The incessant beeping of the alarms. I marvel at the chemical content in the bags hug on my IV. I marvel at these clear fluids, how they drip drip drip, precisely dripping into my veins. How many needle sticks have I been stuck with in over six years! 600? 6000? I watch the needle inserted into my vein.
2x per week. 6 times per month. I don't understand how all this works (from a Bio-Chemical perspective). It's just magic to me. Chemo in. Myeloma out!


Honestly, I'm kinda scared now. When I finally accepted that Revlimd wasn't killing Myeloma much anymore, and my numbers were escalating, I knew I had to switch. I did. And I should have earlier. My results now are nothing less than miraculous, in just a few months. Just from November (6 treatments), December (6 treatments), and now January (soon to be 6 treatments). 6 yes. 6 per month. 6 for year #6 lol. Everything is 6 in 2016!

Even though I read insatiably about all the new medications approved and new medications in the pipeline for Myeloma, I'm scared. One day I will run out of options. I didn't really fully process this before when Revlimid kept working for me. I do now. I get it now. I am totally dependent on the continuous flow of new medical chemicals to save my life, to keep me alive. I am totally dependent upon all the brilliant scientists, researchers, doctors, nurses, the healthcare system. I am totally dependent upon what others figure out to keep me alive. I have to be on "something" "forever". I read too much about how other Myeloma patients don't have any more options. How others aren't responding. How their options have run out. How they've used up all their medical chemical options. It's really scary. I am very sad for them and their families. How much time do I have?


I haven't been into my office since late October 2015. That's really huge for me. It's really weird. It's really life changing for me. But I don't have a choice now. Back in 2010, I dragged myself to work when I shouldn't have, during initial treatments. How ridiculous and foolish of me. So desperate to be "normal" and deny my diagnosis. I dragged myself back to work too soon after my summer 2010 Stem Cell Transplant. I was too desperate to get back to normal. Not accepting my "new normal". Too desperate to take my life back. Too desperate to erase cancer and Myeloma from my life. Stupid. I got sick. I tried too hard to be normal. I tried to pretend Myeloma and cancer was behind me. Thinking I was in remission, and I never had to look back. Ha! Stupid! But it worked for me then. I tried to be normal and do normal things. But I only sabotaged myself. Myeloma came back. What was I thinking. I was thinking I was different. I'm Julie and I can beat myeloma. Ha! Nope. Myeloma beat me. Myeloma came back. Gradually at first. Then the roller coaster results. Then the ascension up the Myeloma mountain. I don't know when I can go back to work now. Monday and Tuesday are infusion days. Wednesday and Thursday are crash I feel gross days and I'm in the bathroom days. Friday I feel a little bit better. Saturday I feel better. Sunday I begin to feel pretty good. Then the cycle begins again. Myeloma: You. Stole. My. Life.


As you know, I'm fascinated with numbers and numerical connections in my life now more than ever. So in thinking about how I've rolled over to 6 years of surviving myeloma, I got to wondering the derivatives of that all important 6 in my life. I am not the sharpest tool in the shed when it comes to mathematical formulas lol, so Google helped me with these numerical realities of how long I have been battling myeloma:

6 years x months = 72 months

72 months x days = 2190 days 

2190 days x hours = 52,560 hours 

52,560 hours x minutes = 3,153,600 

Really! Wow! I've spent way over 3 MILLION minutes dealing with Myeloma! Can this please be a lottery, where I get a dollar for every minute I battle.
Actually, I have won the lottery. The lottery of life. I am still here Myeloma. You haven't won yet. Be scared Myeloma, you devious evil insidious scheming cancer.. Kyprolis and Dex is here to gobble you up, and spit you outta my system!



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

Wednesday, January 6, 2016

It's 2016! Hello to Posts on the 6's

Happy Happy New Year Everyone!
1.6.16
Hello number 6
2016 brings me to 6 official years of battling Myeloma. 6 years.
6 + 6 = 12
Yep! 12 months of posts on the 6's coming. These number correlations in my life never cease to amuse and amaze me!! And how 'bout that 6 in my age too.
It's Wednesday 1.6.16 and already 2016 has started out dramatically and symbolically for me. Monday, just after the New Year's holiday weekend (not that I did anything remarkable), I had my 6th, yes sixth!, Bone Marrow Biopsy. Ugh and Ouch. What a way to begin the new year right?! I have a love/hate relationship with BMB's, like all cancer patients do. They are incredibly painful, yet they are so incredibly informative about our "exact" cancer status. So yes, I brave up, shut up and just do it. I often think about "pre-gaming" with pain meds, or asking for "knock out" drugs, but then I just breathe deep and go with it. I'm so tired of being STRONG, but so used to it. Just my nature. No choice.


So at 1:30ish I had the procedure done. Yes my kind doctor numbed my lower hip area as much as she could, and continued to, as I felt incredible pain. She was swift and accurate and calmly talked me through her every move, which I greatly appreciated! My two nurses assisting her were wonderful and caring. The pain, the drilling feeling, the pounding feeling, the coring/cutting into the bone feeling,- it really hurts. I can't accurately describe it. Bone pain is different than any other pain. It's truly amazing what one can "get used to"...


BMB's are always just so dang symbolic for me. They remind me I really do have cancer. They remind me and confirm to me, that I am sick. They remind me how out of control I am of my body, my life, my situation, my body's bio-chemistry, and my options. I don't cry much over my diagnosis, or my life's circumstances, or my status. But I do cry during this procedure as it's just so dang symbolic! I cry at the pain. I cry at at the "why". I cry because I can't believe what my life has come to. Then I take deep breaths, breathe deeply, talk my self silently through it, bite my lip, brave up and it's over. I wipe my tears away, and move forward. I thank all of them for their professionalism, kindness an caring. And then I'm off to blood tests before my 2016 Kyprolis infusions. Boom. Bam. Boom. Bam. You're a cancer patient Julie. This Is Your Life.

I walk the hall to the blood test lab. I've just had a frikn Bone Marrow Biopsy. I hurt. I hurt mentally. I hurt physically. I walk the hallway to the blood test lab. My diagnosis, my procedure, invisible. I smile. I nod. I have shoulder length blonde hair now. I wear make up. I look "normal". No one knows my story. I don't know their stories. I have a medical ID bracelet on. My diagnosis, invisible. No one knows what I just endured. No one knows I have terminal incurable myeloma cancer. I smile. I walk into the blood draw lab. I offer my arms to the needle vampire. I see my burgundy blood. I visualize the cancer cells in my blood, in the vile. I wonder what story my blood will tell today. I walk the hallway back to Hematology Oncology. I chit chat with the nurses, I smile, I thank them. I suppress my feelings. I take my seat in an infusion chair. I look around me. Every chair has a cancer patient. Patient patients hooked up to IV's receiving dangerous chemicals that are so ironically life saving. Life extending. Death preventing. I'm sore. I hurt. I smile. I "fake it, til I make it". First Kyprolis infusion of 2016. I love you Kyprolis. You ARE saving my life! My medical team is saving my life. They are all amazing, and I appreciate them so very much! Hook up. Suck it up. Smile. Grateful. Appreciative. Shocked. How'd it come to this. But I am here. I had yesterday, I have today, I hope for tomorrow!

What I Wished I was doing
Rather than What I was doing
What I dream I Might do one day
6 Kyprolis infusions per month, 6!

 Some where... over the rainbow... 
Somewhere went my life


What would that wish be...

Where will 2016 take me, take you?


Breathe, Smile, Inhale, Live. Life. Fully.
Don't wait! Go. Do. Be. See.

Make 2016 an amazing year!

So many unknown roads
in a cancer patient's life

I am truly grateful for my 6 years. I've learned so much.
I've seen so much, I've felt so much, I've endured so much.
I am 6 years older, wiser, aware. I am a 6 year survivor!


To. Be. Continued. On. The. Six's 



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


Wednesday, December 30, 2015

6 Years Ago Today, and I'm Still Here To Talk About It! 5 x 6 = 30

Hello 12.30.2015
6 years ago December 30, 2009, I never thought I would see December 30, 2015! But here I am and fighting harder than I knew I could or would have to!


6 years ago today I was diagnosed with Multiple Myeloma. Multiple-I-Had-No-Idea-What-You-Were-Myeloma! I think I've posted a reflective blog about what happened on 12.30.2009 each diagnosis anniversary (2010, 2011, 2012, 2013, 2014), so this post I'll change it up a bit.
I'm still stunned about my Myeloma diagnosis and I still write these blog posts as if I am writing about someone else's life. Honestly, I still cannot believe I have cancer, and I still cannot believe everything I have been through medically, and I still cannot believe how much my life has changed, yet still stayed the same since 12.30.2009

Talk about a roller-coaster year, 2015 has been that. You can read all about my crazy treatment ups and downs this year (see my 2015 blog post list on the right). From dealing with crazy random, unpredictable, volcanic lower GI emergency "situations", to trying too hard to be "normal", to carrying on as if I didn't have terminal incurable cancer, to being too scared to change chemo medications because Revlimid stopped being as effective for me, to the sudden tragedy of my first original amazing oncologist passing away, to my immune system being so weak I was actually turned AWAY from starting my new IV chemo Kyprolis, to my current I-can't-believe-my-numbers-are-improving status!


6 years ago today I received news NO one ever ever ever never wants to receive. I received a permanent life changing diagnosis, that I still shake my head at, and try really really hard to process and digest mentally. Receiving any cancer diagnosis is overwhelming to say the least, but to receive a cancer diagnosis with the caveat that "there is no cure", is just mind bending, just too immense, too intense, too mind boggling, and devastating to comprehend. And to complicate things, Myeloma can be deceiving to most, as we often appear "ok" on the outside, while being really really sick on the inside.
6 years ago today when I was diagnosed with Multiple Myeloma, I didn't have a clue what it was. Fortunately I was diagnosed quickly, relative to what most people go through prior to a Myeloma diagnosis. I had very alarming "routine" blood test results October 2009. These alerted my GP something was really amiss internally with me. I was extremely anemic as a result of a lot of bleeding-out for a year or 2 (yes my stupidity...), weak, tired, sickly, fatigued, dizzy, fuzzy mentally, weird bone pains, low appetite, etc. Then several subsequent blood tests later November 2009, revealed even more concerning blood chemistry stats. As a result, I was referred to Hematology Oncology December 14, 2009. More blood tests and scary medical conversations, then... I had my first Bone Marrow Biopsy on December 18, 2009 and that's when I began to realize something serious was up.

This picture, in the cafeteria, after my diagnosis... I never saw the words, just the picture...
On 12.30.2009, around 11:30am, Dr Lee very patiently explained my Bone Marrow Biopsy results, blood test results, and calmly explained my Multiple Myeloma diagnosis. My.What.Diagnosis?! She then sent me for more blood tests and to pick up several prescriptions. It was the day before New Years Eve. Jim and I became walking zombies. Stunned rag dolls, just nodding and bobbing, saying huh? what? when? where? how? why? get what? do what? take it how? eat what? return when? She was so kind, so patient, wrote notes out for me, told us to go down to the cafeteria and eat something while we waited for my blood test results to see if I needed platelets, or a transfusion, or this or that. I couldn't comprehend what I was being told. I was numb. Jim more numb, more tears. I couldn't process it. Inside the Cafeteria I just stared at that forest picture (above). I didn't see the words. I only saw the trees. I stared at the picture numbly and said to myself, "I have CANCER. I, Julie have CANCER. My life is FOREVER changed. I have CANCER. I have INCURABLE CANCER. My life has changed Forever and Ever. I may not have long to live. I have terminal CANCER. I won't be able to hike in a forest like this picture, anymore..." was what I remember saying in my head. Tears streaming down my cheeks. I just stared at the forest picture. I didn't see the words. Tears streaming down my face. I just keep mumbling... I.Have.Cancer.Incurable.Terminal.Cancer.


Cancer changes you. Battling incurable cancer for 6 years changes you. Being treated for cancer continually, changes you. Wears on you. Wears you down. Mentally and Physically. But you battle. You battle for all it's worth. You battle for hope. Hope that you have additional years...
Here's my 2 cents. What I know. What I learned. What I do:

Pay attention, listen to your body, Don't ignore strange symptoms, Ever!
Get regular blood tests, discuss the results, in detail
Be proactive with your health
Hydrate
Eat well, Healthy, but Fun
Lower your stress. Stress is a trigger. Stress is a killer.
Get rid of negativity and negative people
Laugh a lot, a lot, often!
Speak your mind, be real, be you, be sincere
Shut up, listen, process, analyze
Breathe deeply
Breathe very deeply often 
Hydrate
Smile often. Smile at the little things you notice
Be around people that Inspire you, Energize you, Empower you, Make you happy
Shake off negativity, delete it from your life
Delete negative things from your life
Laugh at ridiculousness
Laugh out loud a lot
Laugh just because
Cry when you need to
Don't repress your feelings
Ask a lot of questions, don't fear honest answers
Hydrate
Rid your life of that which brings you down, or complicates things unnecessarily
Less is More
Less really is More
Eat and drink the rainbow, but have ice cream and cookies and potato chips too
Don't try to be in control all the time
Trying to control things adds big stress
Balance, moderation, simplicity
Impatience becomes Patience  
Hydrate
Do for you
Do for others
Be brave, but it's ok to be scared
Fear heightens our awareness, insights and our acuity
Don't fear, fear
Make your monsters your friend
Talk, share, laugh, ask, question
Do what you love
Love what you do
Do because you can
Pay attention to your needs
Pay attention to other's needs
Set boundaries, and don't feel guilty
Big things become small things
Live life now, don't wait
Hydrate
Use your things, don't wait
Every day is special
Every day is a Bucket List day
Say yes as often as you can
But say No just as freely
Play and be playful
Do your hobbies
Love your job, your career, your goals
Book that trip, take that walk, ride what you love to ride
Breathe in nature and all this beautiful earth offers
Appreciate others always
Say please and thank you
Tip big
Smile
Smile with others, to others and while alone
Notice the little things
Process the big things
Stop and pay attention
Be aware, notice life, immerse yourself
Thank your medical team, your family, your friends, your co workers
Rescue, adopt an abandoned, abused, needy animal
Or take treats to your local animal shelter
Donate clothes, blankets, shoes to those that need them
Put a smile on someone's face as often as you can
Keep a smile on your face as often as you can
Hydrate
Take a lot of pictures
Write your story
Tell your story
Give, give however you can
Give of yourself, your time, your things, your accomplishments
Share you with them
Pay attention
Notice
Be aware
Smile
Laugh
Love
Be comfortable
Be honest
Be real
Be grateful
Say it, express it
Live Life Every Day
Hug those you love, always tell them you love them 
You Have No Guarantee of Tomorrow- Embrace Life Now!

October 2010
December 2015

As 2015 comes to a close, I'd like to thank all of you for reading and following my myeloma journey via this blog. If you are battling this stupid cancer also, I wish you the very best of luck on your journey pummeling myeloma. I hope my writings and musings have helped you, or given you hope, or at least entertained you. If you are my friend, family, colleague, I thank you for continuing to check in and following my status updates.
As we leave 2015, my 5th year battling monster myeloma, I say good bye to posting on the 5's. As we turn the calendar over to 2016, and I enter my 6th year of battling monster myeloma, look for my posts now on the 6's.
I'm not a math whiz or math major, but get this:
5 x 6 = 30
I don't think I'll ever have another math formula like this again!
Goodbye 5, Hello 6, and Today is the 30th.
5 x 6 = 30
Wow. Just Wow!


And finally, speaking of survivors, remember my student-friend-like-a-son Brian. Triple Cancer Survivor Brian. We met up a while ago and he told me of his rap song, representing his cancer battle. Take a listen. Really listen to his words. It's really amazing, just like him!



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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan
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
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 the Heck is Multiple Myeloma?!

Multiple Myeloma is a cancer of your plasma cells, a type of white blood cell present in your bone marrow. Plasma cells normally make proteins called antibodies to help you fight infections.

In Multiple Myeloma, a group of abnormal plasma cells (myeloma cells) multiplies, raising the number of plasma cells to a higher than normal level. Since these cells normally make proteins, the level of abnormal proteins in your blood also may go up. Health problems caused by multiple myeloma can affect your bones, immune system, kidneys and red blood cell count. Although the exact cause isn't known, doctors do know that multiple myeloma begins with one abnormal plasma cell in your bone marrow — the soft, blood-producing tissue that fills in the center of most of your bones. This abnormal cell then starts to multiply. Because abnormal cells don't mature and then die as normal cells do, they accumulate, eventually overwhelming the production of healthy cells. In healthy bone marrow, less than 5 percent of the cells are plasma cells. But in people with multiple myeloma, more than 10 percent of the cells may be plasma cells. Because myeloma cells may circulate in low numbers in your blood, they can populate bone marrow in other parts of your body, even far from where they began. That's why the disease is called multiple myeloma. Uncontrolled plasma cell growth can damage bones and surrounding tissue. It can also interfere with your immune system's ability to fight infections by inhibiting your body's production of normal antibodies. Researchers are studying the DNA of plasma cells to try to understand what changes occur that cause these cells to become cancer cells. Though they haven't yet discovered the cause of these changes, they have found that almost all people with multiple myeloma have genetic abnormalities in their plasma cells that probably contributed to the cancer. For example, many myeloma cells are missing all or part of one chromosome — chromosome 13. Cells with a missing or defective chromosome 13 tend to be more aggressive and harder to treat than are cells with a normal chromosome 13. ~ From the Mayo Clinic