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

Monday, March 25, 2013

27 years of good news!

March 25

Happy Birthday to my amazing son Scott!
Happy one year being cancer free!
Happy many many zillions of happy years to come!

Sometime back in Scott's first year...
:)


Then..... That Adorable baby Boy grew into
This Handsome, Successful Man!
and funny
and loving
and wonderful
How blessed we are to have our son Scott in our lives!!
We love you forever and ever and ever  
Happy Birthday to the BEST son in the world!!!


PS---- Cancer... YOU stand NO chance with US... so just go away NOW!!!

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


Wednesday, March 6, 2013

March = Multiple Myeloma awareness Month!


MMmmmmmmmm.... lots of M's there!

M for Myeloma
MM for Multiple Myeloma
M for Major
M for Month
M for March
M for Myeloma March Madness
M for My Myeloma
M for My Multiple Myeloma
M for Menacing
M for Maximum 
M for Mysterious
M for Medication
MM for Multiple Medications
M for Managed
M for Me
M for Momentous
M for M & M's ... mmmmMint ones!
ok, enough Msillyness !

"Here's Good News from the world of Multiple Myeloma research and Medications:
Dr. Durie, IMF Founder, was interviewed by the Wall Street Journal's Lunch Break on "New Hope for Multiple Myeloma Patients"

GREAT NEWS!
GREAT INTERVIEW!


 And March is for another Month of Multiple Myeloma Remission for ME
 
Mmmmm... this says it all !


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


Sunday, February 3, 2013

My Life in an OCD Antibacterialized Bubble!

This post is for all my friends, family, colleagues, students and people I come in contact with who don't understand my necessary obsession with sanitation and cleanliness:

Did you know- 
"Multiple Myeloma is a cancer of the immune system, of the plasma cells in the bone marrow. Plasma cells are a type of white blood cells; they are part of the body's immune system. When they are normal, plasma cells help the body fight disease and infections by producing proteins called antibodies. In Multiple Myeloma, plasma cells become abnormal... therefore compromising the immune system and compromising the body's ability to fight infections!"

Did you know-
.... "once in the active phase, Myeloma is lethal and without a known cure, with the exception of autologous, allogeneic transplants which carry a 41% mortality rate.
... " problems abound in the pathology and treatment of Myeloma, a mystifyingly disease, with survivals recorded ranging from a few months to nearly two decades.
"Conventional chemotherapy offers a median survival of 18 months to 2 years
"Newer approaches of high-dose combination chemotherapy and autologous stem cell transplant ( that's me :) have demonstrated an improved median survival of 3 to 4 years, with 20% alive at 5 years.... 
"Myeloma, in fact, presents a therapeutic enigma. It does not respond to therapy as cancers generally do. It does not exhibit a dose-response effect; remission duration and survival does not appear directly related to Myeloma cell-kill; maintenance therapy does not necessarily prolong remission ... " 

THIS POST IS FOR EVERYONE THAT THINKS I'M:
A ridiculous extreme germ-a-phob.. 
A too aware of cross-contamination, so stay away from me with your germ-cooties, psycho-freak..
A spray you down, wipe you down, antibacterialize you and your surfaces and please don't offer to shake my hand, weird jerk..

Well you know what?
I'm actually..
An IMMUNE COMPROMISED cancer survivor lucky to be still in REMISSION, still BATTLING incurable MYELOMA BLOOD CANCER, with an immune compromised immune system not able to battle germs like YOU can! 

Hello people,
Don't laugh at me for protecting my fragile health
Don't criticize me or think I should be on psych-meds for OCD
Don't roll your eyes and think I am overreacting to the Flu season or serious public health warnings about the overly virulent NOROVIRUS (extreme stomach virus)
Don't laugh at me and think I have nothing to worry about because "I look/act healthy"
Don't snicker at me for wiping down surfaces and avoiding door handles
Don't be jealous of me using delicious scented antibacterial gels and sprays; I'm happy to share! :)
And don't think ... o geezzzz Blondie relax, you are just overreacting all the time!


The reason I have to be the way I am...
IS BECAUSE I WANT TO LIVE!!!
BECAUSE I DON'T WANT TO WIND UP IN THE HOSPITAL because I was exposed to your germs!!!
BECAUSE I DON'T HAVE THE STRONG IMMUNE SYSTEM LIKE YOU, A NORMAL HEALTHY PERSON
BECAUSE MY WHITE BLOOD COUNT (and CBC's) HAVEN'T BEEN IN THE NORMAL RANGE FOR YEARS!!!
BECAUSE I HAVE SURVIVED MONTHS, YEARS OF CHEMOTHERAPY AND A LIFE THREATENING STEM CELL TRANSPLANT PROCESS
BECAUSE I HAVE to be CAUTIOUS because I HAVE TO BE... to REMAIN HEALTHY!

Hello people... I am not Normal... my body is still fighting, and I don't have the superpower immune cells you do!!!

So here's a little enlightenment about being ImmunoCompromised:
"Definition of Immunocompromised
A state in which a person's immune system is weakened or absent."

"Individuals who are immunocompromised are less capable of battling infections because of an immune response that is not properly functioning. Examples of immunocompromised people are those that are undergoing chemotherapy or radiation therapy for cancer and/or are in recovery from cancer treatments... Other conditions, such as certain cancers and genetic disorders, can also cause a person to become immunocompromised."
"Immunocompromised individuals can be prone to more serious infections and/or complications than healthy people. They are also more prone to getting opportunistic infections, which are infections that do not normally afflict healthy individuals."
"Immunocompromised patients are more susceptible to bacterial, fungal, and viral infections that healthy immune systems usually conquer. They are also susceptible to common infections. Often, the symptoms tend to be worse for them."
"There are several reasons why powerful treatments such as chemotherapy and radiation weaken the immune system.
  • These therapies break down the tissue of natural infection barriers such as the skin and covering of the gastrointestinal tract. Bacteria and fungi travel through these openings and infect the patient. Many hospital procedures such as finger sticks, bone marrow aspirations, and venipunctures (inserting a needle into a vein) can disrupt barriers put up by the immune system and allow infectious agents to invade the body.

  • Hospitalization itself may increase the risk of infection. Hospitals tend to be home to more antibiotic-resistant bacteria. This fact is of course a problem for the seriously ill, because they spend a lot of time in the hospital.

  • Chemotherapy and radiation treatments can harm or destroy white blood cells such as T-cells, B-cells, and Neutrophils -- key components of the immune system. These cells help the body recognize infecting agents that invade the body and help protect you from either getting infected or help fight off the infection.

  • Use of steroids, sometimes prescribed to patients, can weaken the immune system by affecting how the white blood cells work."


    Ok, so there you have it!
    Be nice to me
    Respect and understand my goal to live
    As long as I can
    As a semi-healthy, functional person

    I hope you never have to experience what I have
    I hope you never have to endure what I did
    I hope you never have to worry about your health as I do
    I hope you never have to be OCD by choice as I am
    I hope you always have a super strong, super healthy immune system

    And I hope this post helps you understand and appreciate the battle everyone with "their something", is struggling with and being challenged by! Where's the bleach and alcohol... bring it on!!! :)

And to complete this post, here's a wonderful excerpt from my Myeloma girlfriend's blog, summing up what goes through our minds... almost daily:

"Even though I know relapse is inevitable, it is, obviously, difficult to think of it actually happening.  In my imagination I had put it somewhere far off into the future. Relapsing was a vague vision and if I didn't think about it too much, it seemed like it just might go away. (Thank you Carole for stating so exactly, what we all silently think...)
Compelled CLarity My New Reality: Multiple Myeloma Carole Leigh 

And finally, check this out for inspiration!
great-great-grandmother-rides-again.



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

Thursday, January 10, 2013

Still winning... one year later

January 10, 2012, one year ago today-

My son Scott had surgery to remove a "mass" in his bladder...
Going into surgery, we weren't too worried... just look at us...


As his Urologist didn't think it would be "anything to worry about"

January 16, 2012
We received the biopsy news... the "mass" was cancer...  Scott had bladder cancer...
Diagnosed just about 2 years after my Myeloma diagnosis
Seriously!!!

Well that was then-

And this is now...
January 10, 2013 one year later... Scott's still cancer FREE :) and living life to the fullest!!

Christmas 2012

And remember the 2012 "bucket list trip" :

Hawaii July 2012


Celebrating good health, 2012


But I can't help but wonder... was cancer brewing in both of us... back in the days of childhood innocence?


2013 = Winning!!!
We're both winning
Scott's cancer free
And I'm still in Remission
(Unless I find out otherwise, at my City of Hope oncology check tomorrow!)

Stay tuned...

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

Sunday, December 30, 2012

3 years ago today I was diagnosed with CANCER

3 years ago: 12-30-2009 
Around 11-11:30am

Jim and I were at Kaiser Hematology/Oncology
Receiving earth-stopping news:

That my 1st bone marrow biopsy on 12-18-2009
Revealed I had high-risk (of course!) Myeloma (who?) blood (what!) cancer (what the?#%$#@+*!!)

Today --> 12-30-2012 I am in Remission :)

I've survived countless rounds of oral pill form Revlimid chemo paired with powerful steroids, several rounds of several types of high dose IV chemo, an Autologous Stem Cell Transplant, an entire month of hospitalization in isolation, losing my hair, months of recovery, and almost 2 years of follow up maintenance Revlimid chemo... not to mention what I have been through psychologically... and here I am...  a full 3 years later... grateful to be writing this blog and reporting that I am still winning and dominating Myeloma!

For a quickie re-cap of my cancer story, please see my blog entries from December 2010 and December 2011 (and of course all the entries in between if you really want all the details :)

My recent 12-14-12 blood test results indicated many close to "normal" results.
Although Myeloma still renders me "immune compromised", I'm feeling pretty good overall. Tried still, some neuropathy still, never really "normal", but very grateful for my "new normal"!

I have been off maintenance Revlimid chemo since June 2012 and time will tell how long my body can fight off the cancer cells that are destined to return... at sometime... since as of 2012 there is no medical cure for Multiple Myeloma... 
                                       
                   A Big Thank You to everyone for 3 years of support 
                               and encouragement since 12-30-2009  

Thanksgiving birthday 2012

I am so blessed and lucky to be alive
and surrounded by love, life and fun  

Cheers to 2013 

and Happy New Year to all my
Blog Buddies 



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


Wednesday, December 12, 2012

12-12-12

Just had to do a post on 12-12-12 as I don't think I will have another date like this in my lifetime...
I'm enjoying numbers and number patterns in a way I never did before all my blood tests!

My 3 year Myeloma diagnosis anniversary is coming up later this month 12-30-12
And my monthly cancer status check is in 2 days on 12-14-12
Numerically ironic, since my first Hematology appt, prior to diagnosis, was on 12-14-09

I may have some good news regarding some of my CBCs ... more to come after 12-14-12

But the last few weeks have been emotional for me-
Several deaths, much sadness, much personal reflection
They are gone... I am here

Bittersweet move from my office since 1994 to a new temporary office for 2 years, until the new building is completed. Hopefully remission holds for me and I have the chance to move again, into the new Admin/Student Services building in 2015

I have a mighty fine new view indeed! 
Counting my blessings
and thanking my colleagues
 for picking an office with such an amazing view of the campus,
as I was too ill to come in that day to pick my new home away from home.


Additionally 
Grateful for all my fur-kids:
2 (of my 4) beautiful doggies
that lift my spirits,
make me laugh and smile:
Paws and Abbie 

Life is so fleeting
And each day brings so many surprises and challenges
Who knew I would have the label of cancer survivor on 12-12-12
I used to think I would live forever
Now I live one day at a time, 
one oncology appointment at a time,
from blood tests to blood tests
I am here... so many are not...
I am so very grateful
yet still so shocked...
I have terminal cancer...


 12-12-12 Today
 12-13-12  Tomorrow
 12-14-12 We'll see 


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



Monday, December 3, 2012

Hoof prints and still Winning!

Hi Everyone-

Thank you for your continued interest in my Remission status and blog updates! Your support means the world to me!

As of late summer 2012, I officially graduated from monthly Oncology checks to every 2 months.
Next blood tests and cancer status check is Dec 14. I'll post my medical update soon after my appt.

In the meantime, occasionally... very occasionally I get this view ~ 
The very best view in the house
My house of oak trees, soft dirt, rich scents of wild weeds, 
deer in the distance, birds chatting and chirping, 
squirrels and lizards darting about...
and my most favorite sound of all ... 
4 hoofs effortlessly trotting beneath me :)


Take that Myeloma!  Seems to me, this month... I am winning!


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

Tuesday, September 25, 2012

When Normal becomes Abnormal

Hello loyal blog readers!
A sincere thank you for caring about my status and continuing to return here for my monthly postings and musings! (I actually wrote this weeks ago, but never posted it)

I know it's been a bit longer than usual since I've entertained you here-
I've been busy recovering from recovery and I'm actually trying to figure out where my head is regarding my current news.
Hence the feeling that "normal" now feels "abnormal"...

It is with cautious celebration I announce to you that I have been officially taken off ALL Myeloma treatment medications! (for now that is) ----> Let me detail that, just so I can absorb the full impact of what I write:

As of my last oncology appointment, I am no longer on ANY chemotherapy or any other cancer related medications, treatments, pills, IVs, prep for hospital stays, maintenance medication therapies, etc
I am not drinking, swallowing, chewing, ingesting via mouth or veins, ANY cancer fighting medications at the moment of this blog writing!

Seriously though, the words ANY and ALL are kind of scary!!!
Good news: yes! Scary: yes! Concerning: yes!
No cancer fighting meds = the possibility that Myeloma can come back at any moment!
I live with the thought that those monster Myeloma cells are perched waiting with evil, far reaching tentacles, looking for a weakened cellular moment to sneak back in!

Throughout all my treatments since Dec 30, 2009, I was secure in knowing I was well taken care of by my expert medical staff. I felt very confident with their expertise and recommendations for my treatments. At diagnosis, I felt as if I was suddenly tossed onto a giant roller-coaster, where you're told to jump in fast, buckle up, and whoosh- you're swept away on this lightening fast, intense journey, with no options to get off.
You just do it fast... to save your life... fast!

As scary as all the meds and their crazy side effects were, I actually felt powerful, "transformer", super-hero like, knowing I had research-medical science on my team and chemotherapy coursing through my blood, gobbling up my Myeloma cells since January 2010!
Weird as it sounds, twisted as it may seem, it's actually unnerving not being on ANY cancer medication or any chemotherapy. I am relying completely on ME to keep cancer away...
Scary, because a few years ago my body chemistry sabotaged and betrayed me, and "gave" me cancer, and now I'm relying solely on me again to stay healthy and cancer free.
Sadly body ... I don't trust you anymore!
I don't feel free or released from chemo, I feel kinda scared without it...

So how did my chemo-freedom come about?
In prep for our Summer 2012 "bucket list" Hawaii trip, my oncologist and I agreed I should try to boost my weakened immune system and take a break from Myeloma fighting Revlimid chemo maintenance, a month prior to the trip. The plan was to go back on when I returned.

Well, guess that wasn't so successful, as I wound up really sick in Hawaii.... (see my previous blog for details) and to add insult to injury, I grew a crazy "Spindle Cell" related mucosa tumor in my mouth... fortunately benign!
Obviously my immune system was W E A K!!! and Hawaii spells "do-over" now!

So here's my current status:
~ I continue to remain off Revlimid chemo in an attempt to build my immune system up and see how I do without any cancer treatments- take that Myeloma- I'm gonna battle you back all by myself!!!
~ Currently, my blood levels hover just below normal, but won't take that giant step to normalcy- close, but not normal
~ So I continue to remain "immune compromised", BUT- still in Remission

What does all this mean?
I've graduated from monthly oncology checks to 6 week checks
And I have escaped a fifth Bone Marrow Biopsy status check!!! ssshhhh I think my oncology team has forgotten!!!

But lest I forget my true reality... no matter what my current numbers say, no matter how I feel, I know a Multiple Myeloma cancer diagnosis  is terminal... there is no current cure... and honestly, my daily reality is knowing Myeloma cells can invade again, any day... and that's why it's kinda scary not being on any cancer fighting meds!

So-
I appreciate every day
I pretend nothing
I know my reality
I am always grateful for my fast diagnosis, spot-on treatments, and my amazing medical team
I am still in Remission, 2 years post stem cell transplant
But I am acutely aware what Remission means, vs cure
I pretend nothing
I live everyday, grateful for another day
=======================================================

Here I am celebrating life 
with the Sleek and Famous 
at
Magali Thorobred Farm, Santa Ynez, CA
with Mr Olmodavor the handsome Thoroughbred stallion
 and

Kentucky Derby winner
Mr Giacomo, who loves me :)
or does he spy my carrot!
I call this
the cancer
Winner's Circle!


PS- son Scott has his 7 month status Cystoscopy check, and he received good news! No sign of any new tumor growth! Scott's working hard and playing hard- cancer doesn't stand a chance with him!

And a shout-out to Phil Brabbs! Note my burgundy DOMINATE bracelet. Phil and I have been supporting each other throughout our Myeloma treatment journeys via our blogs. Phil's personal story is truly remarkable and a must read!
Click here to read all about his Cancer Kicker foundation! 

Thank you loyal blog follwers for caring and reading, and look for another post in October... I have a funny idea!

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



Sunday, July 22, 2012

Of Unsuccessful Celebrations

Seriously............... !!!!
2012 Vacation (anniversary) celebration fail :/

July 2010:  2 years ago I was pitifully and painfully languishing in isolation at City of Hope Hospital battling for my life... not knowing the outcome of my high dose Melphalan chemo and Autologous stem cell transplant.
Rereading my postings from July 2010 is a very powerful reminder to self of my "then"...
How challenged beyond challenged I was then-
How I felt more awful than awful then-
And how then, I was a changed girl mentally, confronting and processing serious life and death issues.

So fast forward the healing clock 2 years-
Time has passed and I have healed in many ways and remain in remission per recent blood tests!
Hence our 2012 "Bucket list" planning begins...

First stop: Hawaii !

I saw this trip as a wonderfully symbolic way to celebrate life, my 2 year Myeloma remission and mark my July 5 Autologous stem cell transplant:
Inside and hospitalized then,
Outside and free to play now!
Hawaii here we come :)

July 4, 2012 we landed in Hawaii, ready for daily doses of salt water therapy, sandy relaxation and liquid refreshment!
I was so looking forward to more than a week of NO challenges, ALL fun and frivolity, DAILY soaking in the amazing turquoise water, floating with an occasional sea turtle, and laughing and playing carefree non stop!


Well Hello Reality-

Suddenly, before I even hit the beach, drank an island drink or even had a chance to get sunburned... I had a rude and all too familiar July 2010 reenactment!
I suddenly started not feeling well!!!
It crept in with killer headaches; and I mean super intense headaches (which I rarely get even mildly), so I knew something bad was up.
Then came the scratchy throat-
Then came the ouchy-achy skin and all over lethargy...

And BOOM, as if the cancer-gods were laughing at me... sending me back to July 2010, I was isolated in my Hawaiian hotel room sicker than sick with a fever higher than high.
Seriously, I could not believe this was happening to me!
I know my body's signals.
And I knew something bad was brewing... I tried to mentally will it away, Tylenol - Advil it away, turquoise blue water it away, lounge chair on the beach it away... to no avail.

Sadly, I was getting something and getting something big :(
Thumbs up, faking it lol

In the middle of all this everyone else is having an absolute blast. Tanning, swimming, floating in tubes with turtles, inhaling tropical drinks, lounging by the pool, sunning on the sand, reading, playing, shopping, snorkeling, parasailing, touring around, eating, drinking, partying, meeting fun people from all over the world... and me, I'm feeling more awful by the moment.


And after trying to pretend I would be ok, I bit the dust, 
rather bit the sand,
rather fell into the hotel room bed and stayed there... 
for a day or two or three...
At least it was a room with a fairly nice view, 
15th floor with a torturously beautiful view 

And so... there went my July 2012 anniversary celebration in paradise, ironically feeling like I was right back at City of Hope Hospital 5th floor, inside looking out...

Seriously, I still cannot believe how sick I got, how high my fever was and how much I was not able to do while in Hawaii. But to be fair, periodically I was able to drag my sorry self out of the room every other day, fever, headache, sneezing, coughing and all, achy skin, and all.
I was able to semi enjoy a day or two in the water, a drink or two by the pool, Duke's famous buffet, Duke's sunset serenade concerts, and a brief walk around town before I collapsed back in the room, while my crew partied and played without me :(

(Don't get excited for me,
 it's only a non-alcoholic fruit smoothie)

City of Hope look-alike with palm trees!

And for the final ironic torture- 
If being so sick wasn't enough-
On our last day before before our flight, 
the last day I could have enjoyed the beach since my fever had finally subsided...

Waikiki Beach is invaded with stinkn Jelly Fish!!!!!!!!!!
Seriously... all I can do is laugh at the ridiculous ironies in my life

Until next time...
Paradise lost on me 

And here I am, headed back to work, and I am still not feeling fully well.

I forgot to mention... my fever was so high I grew this crazy little tumor on my inside cheek that I had to have surgically removed last week on the advice of my oncologist.

Biopsy results due in a week...

JULY 28 UPDATE BIOPSY RESULTS ARE IN:

FINAL PATHOLOGIC DIAGNOSIS
MUCOSA, BIOPSY:
- ULCERATED SQUAMOUS MUCOSA WITH UNDERLYING SPINDLE CELL PROLIFERATION, MOST COMPATIBLE WITH FIBROMA. 
- SPECIAL STAIN S100 ONLY SHOWS FOCAL NON-SPECIFIC STAINING AND IS INTERPRETED TO BE NEGATIVE AND NON-DIAGNOSTIC OF NEURAL TUMOR.


===================================
WHOLLY COW!!!  what in the world is going on with my system!!!
From what I read about ULCERATED SQUAMOUS MUCOSA WITH UNDERLYING SPINDLE CELL PROLIFERATION.... that's not exactly a good thing... 

WhatEver....... at least it was BENIGN !!!



Sunday, June 3, 2012

Today is National Cancer Survivor's Day! Who knew?!



The 25th annual National Cancer Survivors Day is Sunday, June 3, 2012.

"National Cancer Survivors Day® is an annual, treasured worldwide Celebration of Life that is held in hundreds of communities throughout the United States, Canada, and other participating countries. Participants unite in a symbolic event to show the world that life after a cancer diagnosis can be meaningful and productive..."

Well who knew? I sure didn't! 

Every time I read something about cancer "survival" or being a cancer "survivor"... I still just can't fully "connect" to the statement or idea.
Have I never really fully processed that I was diagnosed and treated for a terminal blood CANCER?
Have I "forgotten" all my TRAUMATIC live-saving treatments? Hardly!!!
Am I in denial?
Seriously, I should be fully "in touch" with all of this! But honestly... I feel a disconnect...

Yet-
I do know I was shocked when I was actually diagnosed on December 30, 2009
I do know I was really affected by all my initial chemo treatment medications early 2010
I do know I suffered from IV Cytoxan chemo June 2010
I do know I suffered from IV Melphalan chemo July 2010
I do know I received my own stem cells back in an Autologus Stem Cell Transplant July 5, 2010
I do know I was very seriously ill and could have died... several times... had I not had the treatments I did
I do know I lost my hair and had a complete visual make over, several times over since
And I do know I have continued on monthly maintenance Revlimid chemo to this day to continue to battle back the Myeloma cells trying to invade and make a come-back

AND I KNOW I AM VERY FORTUNATE TO STILL BE IN REMISSION!!! and approaching my 2 year SCT anniversary!

So to celebrate Cancer Survivor's Day TODAY and my personal remission since late summer 2010 and other's battling CANCER along with me-
I am wearing a Tshirt that says in BOLD letters: SURVIVOR

Ok... I am trying to feel this, trying to connect, trying to process I had/have cancer...

Here's the pictorial of me celebrating Remission at various Cancer events this year:

RELAY FOR LIFE May 2012
with my dear friend and avid supporter
Kelly 


S U R V I V O R S! May 2012

Hubby Jim and me
Wow, how can we both be Cancer Survivors?
(not to mention that son of ours
who is further out of touch with this cancer thing than me!)


Next BIG Survivors event:
City of Hope's giant BMT - SCT reunion
extravaganza with thousands of survivors!


And I mean THOUSANDS!!!
Seriously amazing!!!

Find me and Jim... left corner (I'm in red) 3rd row behind "Welcome" 

Me, my awesome Dr Kogut and fellow Myeloma survivor Jim

Me and Dr Kogut
Mr Awesome himself

Me, being me, showing off my 22 months
Post Stem Cell Transplant button


Ok, so after all I've been through 2009, 2010, 2011, 2012
you'd think I would connect with having cancer, right?

Well I do...
when I try to do things like I did
prior to a terminal cancer diagnosis
that's when I connect with 
C A N C E R
as cancer stole my "perfect" health
my energy
my stamina
my get up and go
and my ability to be Cowgirl Julie

So my new hobby is
short distance
Horse Back Walking :)


HAPPY CANCER SURVIVOR's DAY 2012




Tuesday, May 1, 2012

Rescue and Remission

Hello May, 2012

Remission is still my status, paired with Revlimid chemo 2 weeks on, 2 weeks off
"So far, so good"... as my wonderful Oncologist Dr Lee always says
I continue to experience all kinds of side-effects, and I am re-evaluating my "new normal" as it's not so comfortably "normal"... but no cancer whining here, as we have happy rescue news!!!


Look who Molly "sent" us:

Meet Abbie!
(sporting Molly's collar)

Rescued from the mean streets of LA

Here's Abbie, arriving HOME
Goodbye dirty City life
Hello, Country living!

Thank you sweet Ashley
for Abbie's ride home :)


Abbie meeting the gang!
Bet she's processing her good luck
and how she escaped "doggie death-row"
for a permanent stay at "Visneyland" !


Yiippeee!!!
3 of my new pals:
Paws, Hanna and me Abbie


Death row rescues we are!
Hanna and Abbie celebrating life and happiness at "Visneyland"
Hanna's one year anniversary!
Abbie's one week anniversary!

Thank you New Leash on Life for the amazing rescue work you do!
Saving precious lives, giving doggies a chance at a new life.

Thank you beautiful Molly for sending us your little angel
Your spirit lives on forever with us...




Monday, April 2, 2012

Cancer Won

R I P our beautiful Molly
October 2002 - March 28, 2012
Stupid, useless Cancer

July 2003, just 9 months old
Shelter rescue Molly
We're her third owner
Lucky us!

2011
Beautiful, loyal girl
cancerous tumor just beginning to show
on her beautiful head

Look at the tennis ball size bump
hate you cancer :'(

Early 2012
hate you even more cancer :'(

Horrible, awful, disfiguring cancer
You stole our beautiful Molly-girl
March 28, 2012
Heartfelt Thank You our exceptional and wonderful Veterinarian
Dr Mariko Kramer
for all your loving care of Molly during her illness.
We are forever grateful to you for all your genuine caring for Molly
We love you !

Sweet Molly and baby Pawsy
Here we are cancerous together in 2009
and neither of us knew it!

Cancer stole you from us too soon Molly
I'll fight the fight forever in your memory

You were so brave, so strong, and never complained
If only I can be as strong and brave as you
 when my time comes...

RIP our brave, beautiful, sweet, kind Molly-girl 
:'(

(It's only April, and our family has had to deal with 2 cancer diagnoses already: our son Scott (January) and Molly... hopefully the next 8 months of 2012 will not bring any more !!! )

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.