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

Friday, December 30, 2011

Diagnosis: Multiple Myeloma - 12 - 30 - 2009

December 30, 2009 my life forever changed
December 30, 2009 I was diagnosed with Multiple Myeloma CANCER



That day, that appointment, is still a blur... except for the word cancer, cancer, cancer
Multiple Myeloma Cancer invaded my body and consumed my life
Multiple Myeloma Cancer consumed my body and invaded my life

Battling MM 2009 became my daily mission
Battling MM 2011 is still my daily mission

December 30, 2009 cancer was winning
December 30, 2011 I am winning

2009 I was just beginning to understand the deadly significance of my blood levels
2011 these blood levels = Remission :)

White counts, Red counts, Platelets and Neutrophils
Lymphocytes, Eosinophils and Basophils
Calcium, Proteins and M-spikes
CBCs, Creatinine, and Glomerular Filtration rates
Leukopenia Anemia
Immunoelectrophoresis
Kappa, Lambda Light Chains and Free W Ratio
(huh??? did my blood sign up for a Sorority or Fraternity!!!)

Beta-2-Microglobulin was outta control
Immunoglobulins IGG, IGM, IGA screamed ABNORMAL results

2009 I am diagnosed with IGA Myeloma cancer
Normal = between 70-400 mg/dL
Me---> topping out over 5630 mg/dL
I was on my way out and didn't know it!

Bone Marrow Biopsy #1 reveals 67% cancerous plasma Myeloma cells
Bone Marrow Biopsy #2 reveals Chemo cocktails reduce Myeloma to 10%
Bone Marrow Biopsy #3 reveals Stem Cell Transplant pummels Myeloma into Remission
Bone Marrow Biopsy #4 reveals maintenance Revlimid Chemo continues to win!

12 - 30 -2011
I still own REMISSION!!!

Thank you Kaiser/City of Hope Doctors, Nurses, staff members for
saving my life!

So I can continue
 to enjoy moments
like this!


And if you read some Multiple Myeloma cancer statistics...
I shouldn't still be here...
Happy 2 year Myeloma diagnosis/survival anniversary to me!

But January 2012... brings another family member's battle...
Does this ever stop?
I didn't sign up for this ride... can we get off now... please!!!


Wednesday, December 14, 2011

2 years ago today, my life as I knew it, began to change forever

12 - 14 - 2009 ...  2011
Two years ago today I had my FIRST evaluative appointment in a department called... "HEMATOLOGY-ONCOLOGY"

I was smart enough to know what those terms TECHNICALLY meant by definition ... but I was not at all connecting the significance to me!
I arrived at Kaiser check-in for this appointment (that, bad me, I had put off for a month!), and was quite surprised to see the word ONCOLOGY connected on the sign to HEMATOLOGY!
W H A T ??? Huh? Seriously people, I'm in the WRONG department!

Honestly, I was aware there was "something" going on with me and my blood... but I took a casual, over-confident attitude about it
Fortunately, my very diligent GP had called several times the previous month, advising me that "something" was seriously wrong with my blood levels.
He advised me that I needed additional blood work and I needed to be on Iron immediately, as I was dangerously anemic
He referred me to a HEMATOLOGIST fast!

Ha! I thought... nothing's REALLY WRONG with me... I'm OK!
I'm just a little bit tired (lie!)
I'm doing too much, for too many (understatement!)
Random intense headaches (I never had headaches before)
Just a little bit dizzy (scary dizzy sometimes!)
Just a little bit low on iron (very low!)
Just a little bit anemic (very anemic!)
Just losing blood everyday from various areas:
Nose bleeds = Allergies I thought (daily nose bleeds... a lot!)
Mid-life female bleeding issues = normal I thought (a lot! = not normal)
Just a bit thinner than usual, but enjoying that (true enough!)
Feeling faint sometimes (scary, passing out faint!)
Feeling dehydrated all the time (weird feelings with this)
Exhausted and fatigued - I'm just doing too much (way too much!)
I rationalized it all... (O yes I did, dumb me!)


I checked in... lightheartedly...
Jim and I moved towards the waiting area...
I noticed that several patients in the waiting area looked sickly, sort of "cancerous"... their color was off, and several had scarves or hats on, or VERY short hair-
Geeezzzz, I thought, I certainly don't belong in this department as I comforted myself and Jim with the thought that Hematology was on ONE SIDE of the department and Oncology would be ON THE OTHER SIDE, of course detached from where we were headed...
Wrong... NOT!!!

I don't remember many details from this appointment and the appointments thereafter
It was a blur then and still is..
But I do recall everyone seemed to be in a bit of panic over my situation, and I just knew I was fine...

I met my wonderful RN Jalee and my amazing doctor, Dr Lee, that fateful day
Vitals were taken
Previous blood tests were explained and analyzed
Questions were asked
And I was sent immediately to take more blood tests...
STAT!

So much is a blur from that point on
More blood tests, questions and assessments
More concern that I should be hospitalized immediately as several blood levels were DANGEROUSLY LOW or HIGH
Ok, I'll eat better I rationalized
I'll hydrate more... make better blood I thought...
Jim's in a bit of a panic
I'm thinking about being on Winter Break and enjoying the holidays, Dang it!

4 days later, calls from Nurse Jalee and Dr Lee needing to see me for an "emergency" appointment
12 - 18 - 2009
My blood levels are not good
Platelets are dangerously low
My white count is way down
Something about Calcium and Protein levels too high

Jim and Alissa go with me as earlier Alissa needed xrays for a sprained foot
They're asked to leave the room...
I knew things were getting serious

Surprise----- I'm quickly prepped for a Bone Marrow Biopsy
I'm realizing there's something kinda serious going on with me
During the very painful biopsy I suddenly become emotional, begin to cry
I'm realizing that I can't joke about this anymore
I'm a sick lil puppy...
Why else would they need this intense type of assessment
What's all this mean?
I thank Jalee and Dr Lee for taking such good care of me

It was late, cold and drizzly when we drove home
My thoughts spinning
My world was changing fast
How indeed it was, I would soon find out...

A day before New Year's, 12- 30- 2009
I was due to return for THE RESULTS...

To Be Continued...

There I am... late 2009
Possessed by (67%) Myeloma
So completely unaware

Tuesday, November 22, 2011

Friday, November 11, 2011

11 - 11 - 11 A Tribute to Heroes and Warriors

Another November day of ones! Hoping the symbolism means we've all won one, won some battle, won remission and we're number one!
And one day, cancer will not have won!

11 - 11 - 11, a day of celebration of all our Veteran heroes being #1
I thank all of you I know personally and those I've never met, for your service to our country fighting for freedom.
You truly are #1 for all you've done, and represent!


Here are my #1 Veteran heroes:
My husband Jim
US Army

My Dad Hal
US Navy


I haven't ever battled famous World Wars
Just my own Myeloma war

I haven't fought with bullets and guns
But I've fought, battled and won

I don't know much about military missions
But I do know life for me, equals Remission!

I haven't experienced the sadness of battlefield death
But I have fiercely battled life and death

I haven't any experience with bombs and explosives
But I know the assault of internal chemical warfare

My war did not include far away oceans, deserts or jungles
My battlefield was my body
My bunker, a hospital room

I sported the military buzz
Thrilled when I grew new fuzz

Deadly healing chemicals I ingested
Poisonous IV's infiltrated into my veins
Fortunately not Napalm's deadly rains

My heart aches for those lost, injured, maimed and killed
Yet I reveled in killing
Those deadly Myeloma cells
Telling them all to go to h...

A heartfelt civilian salute
From one fighter to another
Honoring your courage, bravery and battles fought

We've waged our respective battles
Assaulted our different enemies to surrender

So let's celebrate our successes
With hearty toasts and cheers
For we are warriors
Our decisive victory:
Winning at Life!

Happy Veteran's Day!
11 - 11 - 11

Tuesday, November 1, 2011

11 - 1 - 11 ~ Cancer is still # 1 ~ but hasn't won!

Yes, #1 rules the day today!
Who was it that said 1 "is a lonely number"?

Hello November 2011
Where'd October 2011 go so fast?

October's are COMPLICATED...
October's represent so many milestones in my life... good and bad.

Two years ago October 2009, I took some VERY important BLOOD tests...
Their IMPORTANCE so unknown to me at that time!
Those October 2009 blood tests SCREAMED something was WRONG with me, but I really didn't listen well
Those October 2009 blood tests eventually opened the diagnosis-window to the invasion of Myeloma

This October 2011 was a month of continuing to try to move forward in my "New Normal"...
But WHAM!, slap me in the face BAM!... cancer comes to me in multiple reminders!!!

October 2011 seemed to bring more Cancer diagnoses:
My beautiful doggie Molly, my students, colleagues, close friends, neighbors, and new Myeloma sisters from across the country and the globe.

Goodbye October
Hello November

Here's a tribute to October's moments:

Remembering then:
October 2010
Buzzzzzz time !!
Thank you my son Scott for a great boy-cut
I still laugh when I remember you buzzing me
and I wanted to retain my "bangs".. hahaha!!


Reclaiming now:
October 2011
New October, New Hair, New Plan:
Born Blonde, gonna Dye / Die Blonde!! lol
Goldilocks is coming back... well... in short form
(Lousy pic of me, sporting the the Revlimid chemo tired look!)


Reinventing todays:
Bring on the Blonde!
Back to being me... (well almost, ha!)
Celebrating Jill's superstar success !!


Representing love:
Our beautiful shelter-rescue Molly
Born in October 2002
Diagnosed October 2011 with bone/sinus cancer
(the black doggie here, not you, daughter Alissa!)





Beautiful Barbara
My new Myeloma girlfriend (and her husband Rich)
from Alabama
Thank you Myeloma for introducing us!!!


Celebrating Remission
(Debbie, me and Jim)
Thank you Debbie and Cameron for your $upport!
Thank you COC Nursing Students
for selecting me as your 2011


Ultimate fighters!
SuperStar Supporters
Brian (right) and Shaheen (left)
His courage, strength, determination, and bravery
leaves me in the dust!


And so....
I thank all of you for your support, love, encouragement, humor and friendship!

I dedicate this 11 - 1 - 11 "blog of oneness" to all of you currently battling this mysterious evil invader into our lives called Cancer.

I am thinking about all of you who have battled, fought and lost
I am thinking about all of you who have battled, fought, dominated and WON!
And I am thinking about all of US who are still battling, fighting, kicking and screaming and not willing to let Cancer win...
So on this day of 11 - 1 -11 ... we're #1 :)

Cheers to Chemo Cycle #13 Post Stem Cell Transplant
Go Revlimid Chemotherapy stomping and chomping on Myeloma cells!
Raising my glass of water, downing my pill and toasting to Life and continued Remission!!!
-----------------------------------

Just saw this!!!
What???!!! I should'a partied more!!!
Read on:


Wednesday, September 21, 2011

Presenting My Story- and Thanking all my Colleagues!

Thank YOU to all my colleagues, friends, family and Chancellor Dr Dianne for attending my presentation today.
Words always seem so inadequate when trying to express my sincere appreciation for the support you have given me...
I wish there had been more time, for more detail, but hopefully what I shared was meaningful, interesting and helpful.

Just having you there, meant the world to me!
Just knowing you care, gives me courage!
Just knowing you...  invigorates me!

~ Thank you to each and every one of you, from every department that attended- I am so very honored!
~ Thank you Chancellor Dr Dianne for attending AND honoring me with your nomination for the SMO Empowering Hearts award! Thank you for your special thoughts, humbling comments and beautiful rose bouquet!
~ Thank you Keitha for coming and representing the Nursing Program students and honoring me with representing your Leukemia, Lymphoma Society's Light the Night Walk fundraiser!

~ Thank you Professor Mike for bringing your VERY BRAVE and so ADORABLE son Daniel, who is currently battling Acute Lymphoblastic Leukemia, and enduring very intense chemo treatments!

Brave Daniel and supportive sister Caitlin
hamming it for the camera on a clinic day!
Thanks for coming to my presentation Daniel :)

~ Thank you Professor Kelly for organizing, publicizing and participating in my presentation, not to mention your Scientific/Biological Brilliance!
~ Thank you RTVF-Media-Film students for filming my presentation!

~ SERIOUSLY... THANK YOU EVERYONE FOR YOU, YOUR PRESENCE, YOUR SUPPORT, ENCOURAGEMENT AND INTEREST.  I am so humbled and honored...
======================================================

"Coffee on the Side" is an academic seminar series which is offered once a month during the Fall and Spring semesters. The goal is to promote interdisciplinary discussions and continual learning for faculty and staff. COTS seminars are organized by the Interdisciplinary Committee."


Sept 2011
How Cancer Stole My Life: Diagnosis, Chemo, a Stem Cell Transplant and My New Normal
Presented by Julie


Come hear Counselor Julie's personal story of her sudden and surprising (incurable) cancer diagnosis, chemo treatments and stem cell transplant adventure all resulting in remission, along with her personal reflections on going from presumed health to a near death diagnosis. Julie will share medical details, personal reflections and answer your questions about this life-altering experience.


=======================================================
Aug 2011
Stem Cell Therapies: Controversies and Cures
Presented by Kelly, Biology Department

What are stem cells? Will stem cells help paralyzed people walk again? Are stem cells the key to curing terminal diseases like Parkinson’s disease and cancer? If so, why is stem cell research so controversial? In this month’s FLEX presentation, we will discuss the current and future uses of stem cell therapies.


======================================================
Please support COC's Nursing Students cancer fundraiser:
Leukemia Lymphoma Society's Light The Night Walk, Fundraiser
======================================================

What is Multiple Myeloma  

About Myeloma 



Saturday, September 10, 2011

Time for Reflections

9 - 10 - 11

As our Nation reflects and mourns the loss of thousands... I can't help but reflect on how fortunate and blessed I am to still be here... but for very different reasons...
I heard on the news that many of the 9-11 "First Responders" are now suffering from various types of Cancers... and prominent among the cancers affecting these brave men and women that rushed to the scene to assist.... is MULTIPLE MYELOMA!

What!!!????!!!!! Multiple Myeloma.... my cancer!!!

On one hand I am honored to be associated with those so brave...
On the other hand... how did Myeloma manage to invade my squeaky clean universe???

And so I reflect....

I've never worked in any industry remotely involving chemical contaminants...
But perhaps the cement buildings I've worked in all my life triggered something molecularly within me?
Perhaps living close to freeways spewing noxious auto fumes and smog triggered something?
Perhaps living close to active oil fields (where I used to ride horses!) triggered something?
Perhaps living close to a co-generation plant triggered something?
Perhaps using fly-spray on my horses (as occasional as it was) triggered something?
Perhaps all the dental and orthodontic x-rays I received in the years prior to diagnosis triggered something?
Perhaps my personal biology has been outta whack since I was diagnosed with hypothyroidism in my early teens?
And I can't help but associate a benign (neuroma) tumor I had removed 11 years prior to MM diagnosis...

I know though, I'll never know why I grew cancer cells within me, or what caused it ...

I know there are a lot of things I'll never know...
but I do know that my mortality stares me in the face more often now, and I do suspect I will not have the longevity my mother did, and my dad currently does!
I do know my "days are numbered" in a way they weren't before...

As I reflect on my Myeloma Diagnosis, and as people ask me often:
Did I have any Symptoms, any signs I had cancer; was I not feeling well those months, weeks, days prior to diagnosis?
I now reflect with a retrospective "Ah-Ha I do remember" awareness that I did have signs; but honestly, I attributed them all to my Very Busy Life at that time.

In 2009, prior to Diagnosis, I was:
Very Tired and Fatigued
Had hard to stop Bloody nose episodes very often
Had (what I thought was typical mid life female) extreme Bleeding
Had weird Headaches (and I never really ever had headaches, ever)
Had lightheaded, Dizzy, woozy, I-feel-like-I-could-pass-out episodes
Was Thinner than I had ever been (and enjoying that!!)
I was very Winded and Breathless when I walked short distances
Had unexplained Bone aches and pains
Had a few more Illnesses than I usually did
My pre-diagnosis Blood tests revealed I was super Anemic
And I was just sooooooo tired and soooooo fatigued...

But I chalked it all up to how much I was doing at the time....
NOW I know many of these were symptoms-
Symptoms of something I didn't know to know were symptoms
Because, WHO IN THE WORLD WOULD EVER THINK I, JULIE, WOULD HAVE CANCER!

So my "New Normal" marches forward
FUN is the name of my game...
Happy trips and whacky hair hats!

Still on Revlimid maintenance Chemo (2 weeks on, 2 weeks off)
And just look at the hair it grows on me (and Jim vicariously)!

The life clock goes tick, tick, tick
So the bucket list goes click, click, click


Monday, August 8, 2011

1 year 1 month post SCT 2011

Hi Everyone-
Just a quick update...

Life's good... most of the time
Busy... all the time
Complicated... all the time
Still trying to find what works for me in the "new normal"...

Still on maintenance Revlimid Chemo
Always tired
Still have Neuropathy, but certainly not as bad as months ago
Still have crazy nerve and arthritis type pains
Had an MRI on Sunday
Hopefully that will identify what's causing my right arm dysfuntionality...

Too many, too close are diagnosed and gone
Too many, too close are diagnosed and going through challenging treatments

I feel very fortunate for my quick diagnosis and treatments and current Remission
Reflecting that I have been on 3 types of Chemo (Revlimid, Cytoxan, Melphalan) since Jan 2010!
But I'm not happy with my transformation
Still mourning the loss of "Goldilocks"

Questioning my future
Wondering my prognosis
Scared to acknowledge my marriage to C A N C E R

Trying to have fun
Trying to bring back normalcy


Tuesday, July 5, 2011

Happy One Year Stem Cell Transplant Anniversary-New Birthday to ME!

July 5, 2010 = City of Hope SCT Hospitalization for the month
July 5, 2011 = I'm Alive, Celebrating Remission, on Revlimid maintenance Chemo and doing ok!


This is how I "celebrated" 4th of July, 2010
at City of Hope with lots of Melphalan Chemo and IV cocktails


 Delivery of my life saving Stem Cells
July 5, 2010
New "Birthday" noted!


It's all about location, location...
Celebrating life, health, recovery, remission
and being able to be barefoot in sandals in the snow!!
July 4th, 2011


Seriously... does recovery and remission get better than this??
Sandals and Snow at over 11,000 ft at
Mammoth Mtn, CA
July, 2011
Breathing deep, and ever grateful!

Well, yes... it did get better with a tremendous Thunderstorm and flashfloods in the Desert on the way home!



Then a stunning Rainbow arching over the freeway on our way home


Then sitting in my Horse arena with my horses and doggies under the Stars and Crescent Moon... until almost Midnight... July 5, 2011... something a year ago... I only dreamed about doing!!!

I am one lucky, grateful, blessed, fortunate gal to have been diagnosed a quickly as I was, medically treated as thoroughly and expertly as I was, and to have recovered to the extent that I have... in only one year

July 5, 2010 = Hospitalized at City of Hope just beginning to learn what a Stem Cell Transplant is all about, realizing I am really battling life threatening cancer...

July 5, 2011 = Learning to really Live each day, each moment as if.... it were my last... my mind is full of thoughts and my heart is full of appreciation and gratitude

And did I mention before, my most recent (late June) Bone Marrow Biopsy showed Myeloma beat back into submission once again! Yes!!!

WINNING!!!!!!!!!!!!!!!!!!!!!!!!!



Wednesday, June 22, 2011

9+ Million Stem Cells Saved My Life... one year ago today

June 22, 2010
June 22, 2011

One year ago today I was at the amazing City of Hope Hospital having life saving Stem Cells (my own!) collected from my blood in preparation for my Autologous Stem Cell Transplant in July 2010


City of Hope Apheresis Center
6/21/2010


Over 9.3 million stemmies were successfully collected from my blood on
June 21 and 22, 2010
Combined with 6 months of Revlimid chemo + Dexamethasone steroids
and IV Cytoxan chemo
and Neupogen injections to pump up my stemmies
 and IV Melphalan chemo
and my Stem Cell Transplant
and a lot of wonderful people...
All combined to
Save My Life!

Hellooooo Myeloma............ I'm Winnnnnnning !!!!


June 22, 2011 = REMISSION STILL !!!

.....................................


6-23-2010
I had a surprise One Year Anniversary present:
a Bone Marrow Biopsy!
Results in a week...
Counting on REMISSION still!!!

Winning!!!!

Friday, June 10, 2011

One Year Ago Today 6-10-10

Has it really been a year since I was Chemo IV'd for the first time with CYTOXAN aka "CyTOXIC" to me!!!

Sheessh! was I naive about what I was in for!! But good thing... as I think my blonde "I'll do just fine optimism" was what gave me the bravery I had...
Knowing what I know now... hhmmm... don't think I'd be so brave! There would have been the anticipatory fear factor for sure
No doubt, "Ignorance is Bliss" was best in this case for what I went thru beginning June 10, 2010...


 Puffy Steroid Me


hooked up and receiving the live-saving poison


 Looking back, I still can't believe what I tolerated chemically!!!
Nor do I fully understand how all these powerful chemicals
work in tandem together to save our lives, rather than euthanize us!
Such a delicate, wonderous balance



Medical science just amazes and intrigues me!
How those brilliant researchers, doctors, nurses etc
really know the exact pairing, balance and amounts 
of these cancer-killing, life saving chemicals


Feeling ok then...
Ha! had no idea how Cytoxan would be so
CyTOXIC to me hours later!
Jim's just glad they didn't hook him up too!



Best nurse ever and forever, Jalee Ms Extraordinare!



Ha! almost looks like the death-sentence chair
But in my case, the Life -Saving chair!

Just another big round of kicking Myeloma's butt out of my system
after doing 6 months of Revlimid and DexamethasoneSteroids prior to this!
Gooooooooooo Chemo!!!
Bring on the cancer-fighting chemicals!!!



Sunday, June 5, 2011

11 months post stem cell transplant! 6-5-11

I can hardly believe it's been 11 months today since my hospitalization and life-saving Stem Cell Transplant!!
And what a monumental year, month, week it has been...

So many important milestones happened on Friday June 3, 2011 !
And to think one year ago, so much was unknown cancerous territory, survival doubts and chemo fears...

So many special details on this noteworthy date of June 5, 2011... 11 months post stem cell transplant and more than a year and a half since Myeloma diagnosis...haha to you cancer... I'm still here and fighting you off, off and away!!

So many medical, personal, parental and professional accomplishments and goals met!

Alissa, Julie, Bilet ruled the stage for a magical moment

Proud parents of the double major (English and History)
double Honors student


Proud Mom and Dad Graduation Day

Priceless graduation moment with COC Chancellor Dr Dianne Van Hook


The era of our Mother-Daughter Student Services team
is soon coming to a close...
Many firsts, many lasts, many milestones
She's moving on, moving forward
New adventures, new location, new college
Special events, magical moments that can never be again
Professor-Counselor-Mom
Announcing
Student-Admissions Office Employee-Daughter's
Name at the 2011 Graduation Commencement Ceremony
Absolutely Priceless
Once in a life time moment for us
Cancer didn't stand a chance stealing this storybook moment from me!

Lucky, lucky us!!!

Wednesday, May 25, 2011

Sick of being Sick and other recent Medical tales

Hello Everyone that might still be reading my Myeloma blog-

Since my last happy posting, I kinda bit the dust... and not in the way I would like... like back in the day when it was "fun" to bite the dust from falling off or being bucked off a horse!

Yes, recently I bit a different kind of dust, as in, unwillingly being relegated to the couch and the bathroom for the last couple of weeks! ...
How can I put this delicately, sparing you the not so delightful biological experiences I've had recently...
First off, after recovering from a head cold middle of April, thanks to my darling daughter, I was well for a whole week! Yiippeee... then my darling son came down with the lovely intestinal bug!!! So being the good mother I am (even tho they are in their mid-20's) I glove up, mask up, and take care of them!!!

But I thought... even tho several of my blood levels are still sub-normal... I confidently thought I would be just fine, and not come down with his awful bug... and boy did Scott get it bad! Off from work almost a week. We talked about this "weird" undefinable stomach pain he had... like none other!
Not long after Scott began to feel better... I began feeling this same undefinable stomach pain... as a matter of fact, the picture of me with the doggies from the posting below this, is right when I was coming down with this awful bug... so a week was spent you know where, doing you know what... enough said... lol

BUT!!! I recovered just in time to.... drum roll... prep for my first ever.... COLONOSCOPY!!! So yes, it seems like I've lived in my bathroom for weeks now... hahahhaa
Yes, most of May has been a body janitorial experience I'm not anxious to repeat anytime soon!!!


Here I am "recovering" from The Procedure!

As a result of this non-elected cleansing (thank you my son) and then the required medical "cleansing experience"... I do have some been-there, done-that experiential tips for all of you reading this, dreading your upcoming experience of this ever so important internal medical viewing event!!!

First off, I tortured and scared myself the night before I was supposed to begin DRINKING the evil gallon of polyethylene glycol, aka GaviLyte-C... by reading online other people's experiences! Dumb! as I was ready to beg-out the next morning and call my Dr and cancel out!!!
But my head overruled my emotions, and I began drinking the cocktail of internal cleansing...

Honestly, the taste wasn't as horrible as I heard and read. But perhaps, after all the treatments I've been thru this past year... many things are now "cake".
So here's my recommendations for a less traumatizing colonoscopy prep:
Eat light and smooth days before
Opt for an afternoon appointment, so you don't "cleanse" all night
Don't eat the morning of the day you begin the prep; clear fluids and broth only
Don't guzzle the laxative prep every 30 minutes as recommended
Drink it slowly so it doesn't make you sick
Drink a glass every hour-ish
Don't follow it with water or sports drink if you feel full
Go with your intuition- if you feel full, don't drink
I used a straw to sip it in the beginning, then actually began to be ok drinking more at a time
Bring your phone, computer, magazines, books, etc into your favorite bathroom with you, as you'll be spending a lot of time there LOL

I actually was able to down 3/4 of the gallon over about 5-6 hours and was actually able to get to bed and sleep ok thru the night (no cleansing that is, during the night thankfully!)
I then drank one glass of prep 5 hours before my afternoon appt and didn't have any liquid 4 hours before the appt

No doubt I was really "drained" and "pooped" out... pun intended haha, and physically exhausted by the time I arrived for my appt, and very ready to have it over and done with!
Interesting to me was my emotional reaction when I was admitted and realized it was going to be a hospital-like, in-patient experience. That caught me off guard as it brought back a lot of feelings, memories and emotions from my July 2010 stem cell transplant hospitalization...


So after all the anticipation, all the prep, all the worrying that they might find "something" I was told I did a fantastic job at cleansing and they DIDN'T FIND ANYTHING! As my nurse assured me... my Dr's quote was :  "NOTHING MEANS NOTHING" :)

Finally, I will add that as I awoke from the "put your lights out" meds, I had a wonderful feeling of peace, calm and relaxation... hhmmmm what were those drugs anyway... I think I want some again!!!!!

Thursday, May 5, 2011

5 + 5 = 10

Hello May 5
5 / 5 / 11

Happy 10 months Post Stem Cell Transplant to me on this 5 / 5



So you think I should play the next lottery with a bunch of 5's
Or perhaps visit Vegas and play some 5's


Not to mention... .5 Revlimid Chemo is
Saving My Life... one pill at a time!


Ha! Enough said on this one today,
as I think the numbers speak for themselves!

Signing off with 10 high 5's



Story to come about Miss happy Hanna (on my lap)
rescued from death row!!

Happy 12th Birthday to you Max, on this 5 / 5 / 11
RIP Maxie and thank you for sending Hanna to us!



Friday, April 29, 2011

Celebrating Thousands of SCTs & BMTs

PRESS RELEASE FROM THE CITY OF HOPE WEBSITE:

Friday, April 29, 2011
"Special Event 9 a.m. – 3 p.m.

"35th Annual Celebration of Life Bone Marrow/Stem Cell Transplant Reunion (Invitation Only)
Thousands of bone marrow/stem cell transplant patients will celebrate their victory over cancer at City of Hope’s 35th annual “Celebration of Life” Bone Marrow Stem Cell Transplant (BMT - SCT) Reunion.
One of the largest events of its kind in the country, the reunion will feature City of Hope cancer survivors meeting their lifesaving donors for the first time.
Celebrating City of Hope's 10,000th BMT/SCT !

"Special Dodger Guest: Andre Ethier

"LOCATION: City of Hope, Rose Garden & Pioneer Park, 1500 E. Duarte Road, Duarte, CA 91010

"Each year, City of Hope invites bone marrow, stem cell transplant recipients and their families to attend the "Celebration of Life" event. This return to City of Hope is a joyous day for all in attendance, as they celebrate the obstacles they have overcome in fighting cancer.
Months or years after their transplants, patients and their City of Hope health-care team members have the opportunity once again to share the success of their treatment.
Annually, two patients and the marrow donors who saved their lives are introduced for the first time. Needless to say, tears of joy are a frequent sight on this emotional day!"

Best Dr ever, Dr Kogut and Best Nurse Practitioner ever, Tina 


Best Dr ever, Dr Spielberger



Visiting City of Hope 5th Floor
My July 2010 home that saved my life!

  That's where I was, up there on floor 5 and 6
for a whole month...



Hundreds, maybe thousands of Survivors
Celebrating our Stem Cell and Bone Marrow Transplants
Celebrating life, health, our healers, care-givers
and our hope for cancer-free futures...

Thank you City of Hope staff members 
and my fabulous Kaiser Doctors and Nurses

One of these days I will fully "connect" with the term "survivor" and that I Had/Have CANCER ... I think I am still in the " H U H??? " stage, as walking around the event yesterday was quite overwhelming. Seeing so many many people who have survived cancer for just months like me, and those who had transplant "birthdays" from years and years ago, was just mind boggling to me! I met so many amazing people!
It was like a family reunion, where we all had this BIG THING in common... random people would congratulate me for my 9 months post SCT and I would look at their badge and see their years of remission or sadly in many cases, years of struggling with several cancers, treatments and in and out of remissions.

I am slowly beginning to realize I am forever part of a new "family" I did not choose or want to be a part of... and no doubt, the monster that brought us all together is truly horrible, yet the spirit of all "us" survivors is beyond remarkable and breath-taking!


My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!


What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)

Infections

Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.