Another New Normal- Confessions

So many of you have asked me... why I am still working?
With the last several month's blood tests revealing that I am really officially out of remission, so many people are surprised I am still coming into work...

(My view walking into my office one spring day)

So I ask you...
Why shouldn't I still work, minimal as it may be, on the few days I still can, when I feel ok?
Why shouldn't I make the effort to feel "normal", since I've always said: "fake it til you make it!"
Why shouldn't I still continue to try to be Counselor Julie, rather than Cancer Julie?

You see, coming into my work really isn't "work" at all to me.
Coming into my office, interacting with my wonderful colleagues and students, makes me feel NORMAL!
And when your life becomes ABNORMAL and turned upside down, NORMAL feels really good!

Honestly, not working would seal the deal for me that I really am ill and not capable of normalcy...
I know that all too well from summer/fall 2010 when I was hospitalized and isolated for a whole month at City of Hope for my (first) stem cell transplant. I was really, really, really sick and wasn't sure I'd make it out of there. I didn't have the CHOICE to go into my office. I didn't have the CHOICE to work or not. I was way too sick to do anything but have the daily GOAL of getting out of my hospital bed and walking to my bathroom on my own, a mere few feet away. My only focus was to survive another day. And when you don't OWN your options, all past and future options become incredibly valuable.

My role of college Counselor has been a big part of my identity for almost 3 decades!
The college environment inspires me, makes me happy and makes me feel alive.
My job is not a job
My work is not work
Being a college Counselor is an opportunity to deeply impact lives.
And I would like to believe I still make a difference in people's lives, even though I currently don't do even a fraction of what I used to do, pre-cancer.

My motto: "Saving the World, One Student at a Time".. is still an important part of who I am.

 And this is the view I am so very fortunate to have

while making a difference in people's lives

Honestly...
If you really want the truth...
I've come to the realization...
I am actually afraid to NOT work!
I am afraid to not do what I have done for more than half my life!
I am afraid how I will actually feel when I actually CANNOT work
When my health, symptoms and treatments actually prevent me from working (which I suspect is coming soon)-
Honestly, that to me, is scary!

People tell me- quit work, and enjoy your life!
What are you doing Julie? You have limited time now, go live your life!
Wait... does that mean my career as a Counselor is not living, not enjoying life?
I worked really hard to become me, and who I am, and how I impact others' lives.
That to me, is living life!

(My view walking from my office one evening)

People always ask me-
Why aren't I traveling, jetting off to far-away exotic places
Skydiving
Zip lining
Eating, drinking, indulging
Partying like none other
Shopping, buying stuff
Going to concerts, and the theatre
Working on that bucket list
Or, if not traveling, just lounging around home
Or taking up a more sedate hobby
Well you know what, those things really aren't what makes me happy
And sadly, I really don't have the physical energy any more, or the immune system to do those things. See my blog from last summer's disastrous Hawaii trip :/

What makes me happy is being someone; being valuable; contributing; sharing; caring; laughing with others; making a difference in this world, in whatever small way I do, until I can't.
My work, means making a difference to those in my little world.
My office and my colleagues have been my extended family for half my life!

My amazing Counseling Office colleagues!

So I ask you ... why shouldn't I work, on those days I feel somewhat ok?
Why shouldn't I try to be productive, feel as "normal" and "ok" as possible, on those days I can?
As the day will come... when I can't...

Cancer is NOT a reason to stop engaging and contributing
Cancer is THE reason to continue living and doing those things that I can, while I still can
Because, soon, cancer will take that away from me...
I think dramatically changing my life right now would really make me feel sick, unaccomplished and non-productive.
But at next week's oncology appointment I will find out, what I can and cannot do...

I've worked since I was 12 or 13 years old-
First babysitting, then grooming horses and mucking stalls to pay the monthly board of my beloved first horse-
I also worked for my parents doing "odd" jobs-
I then stepped onto the first rung of my career ladder, at 18, working as a Peer Counselor-
Which evolved into the second rung of my career ladder, working as an Advisor-
Which then evolved into my role of Counselor Julie!

Working for and with others is what I do best.
Being there, intellectually and emotionally, for others is what I specialize in.
Promoting, empowering, supporting, analyzing, challenging ideas, inspiring, mapping, planning, advocating, and encouraging dreams and goals... that is what makes me feel alive.
Not working, not doing, not being someone in this world, would confirm I am incapable and sickly... which would confirm I have terminal cancer and that cancer is winning.
And I am not willing to accept that cancer is winning yet...

 My office view one day 

when the Red Cross Blood Mobile

was visiting campus! O the irony of life!

And so I will work until I cannot; minimal as it may be, with apologies to my colleagues

I will do what I can, learning and accepting my new limitations

Knowing my cancer-driven "new normal" now defines who I am and can be

And I will live my life, in little spurts of energy, being there for others, human and animal :)

As that my friends, is what makes me happy... 

 And just maybe

I might make it to see the opening
of the new Student Services building

~ ~ ~ ~ ~ ~ 

Next blog:

The Treatment Plan...

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

August status check... not the status quo

And so...
I had
an Oncology appointment
today...

A week prior, I casually took my "routine" blood tests
Confident in my continuing winning remission status.
Confident... since I had graduated to every-other-month-status-checks!
Confident, as that's a big dominating-myeloma-milestone.
So confident with my remission, I committed to growing my hair out-
No short chemo hair for me any more, I told myself!

The week moved forward, without too much cancer "status"-dwelling
Life is so busy, other complications complicating my complicated life
Complicated people and things complicating my already complicated life.

Scott had his own recurrence scare!
Was quickly scheduled for a Cytoscopy on Wednesday,
And is thankfully just FINE!
Just a scare! 

Seriously, Kaiser online is so awesome...
Give blood "Stat"
Then boom!
"Good news" NORMAL test results are viewable online
"Bad news" ABNORMAL results, are not viewable.
I know, that which I can see online is not what is worrisome...
It's what I cannot see that tells the story
And I know enough to know, what I don't see, is concerning.

So my week of wondering
what story my blood would tell
was over today
and I found out more than I expected
more than I was prepared to hear....

I learned I am not invincible
I learned I still have a faster ticking clock than I actually believed
I learned I need to do what I want to do
NOW!
I learned now is the time for moonlit horseback rides
Now is the time for going where I was planning to go
Now is the time to be and do with those I love
No more waiting 
Now needs to really be real, very real
No more just mouthing the words

No more postponing
No more thinking I have an infinite amount of tomorrows
No more smug thinking that I'm different
That I have my pre-cancer life back
That I beat the Myeloma odds
That I get Remission for a long long long time
That I have plenty of time to make THAT list
and actually DO that list...

I learned
Now I must do THE list!

I asked my wonderful oncologist pointed questions-
I heard I don't have the (forever) time I naively thought I did
I kind of knew, but today I actually asked how finite my timeline realistically might be
I asked if I we should go to Hawaii now, or can it wait
I learned I shouldn't wait... go soon... go now... don't wait, do whatever NOW
I learned that statistics don't lie

I learned that I really am out of remission
That my June tests didn't lie
That my August levels are even higher
Double, the high end of normal levels, high
Myeloma has officially actively returned
Almost 3 years to the day
I left City of Hope hospital
Myeloma has returned
1 year to the month, since I have been off chemo
Myeloma has returned, recurred, reoccurred, re-invaded my bubble

I learned my IgA myeloma levels are moving up fast
June was slightly abnormal
August is now officially very abnormal
And I have the dreaded "M-protein spike"

Goodbye pseudo health
Goodbye remission since Stem Cell Transplant 2010
Goodbye one year free of chemo
Goodbye head immersed in the sand, cocky overconfidence

Hello soon, to life saving treatments... again
Coming way too soon...

Hello to the ultimate body betrayal
I just don't get it...
I was Julie the Invincible!
Am I "allowed" to ask... why me?

Next full moon
look up
picture me
outside hugging my horses
my tiny tears of reality streaming down their manes
as I ride like I've never ridden before...
Hoping, that all this must be wrong!
That perhaps, someone will say... "just kidding", you're fine, we made a mistake!

This amazing video represents my all time riding dream

that now, honestly... is just a dream

Thank you Stacy 

for this breathtaking ride!

Stacy Westfall stunned her audience competing bareback and bridleless,
(to  "Live Like You Were Dying" by Tim McGraw)

in tribute to her dad, who had just passed away

(2006 Freestyle Reining, All American Quarter Horse Congress)

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

Month of wondering...a bit of travel, and trying not to think about our cancer status

June blood tests brought surprising news of seeing the all too familiar "ABNORMAL" noted by several of my levels. But my oncologist was not alarmed and cautioned that this type of fluctuation happens.
Most important will be my next month's tests... that will truly tell the tale of my status.

A year ago July, we were headed to Hawaii for our celebration of life, family, friends, remission and me being off all treatments and chemo and Scott fully recovered from his surgery! Well that didn't work out so well for me, as you can read in my July 2012 blog...
I wound up really sick and spent most of my time in the hotel room, feverish and stunned, and even grew a weird benign thing in my mouth called a "spindle cell carcinoma" ha!  ... so much for trying to be "normal", getting on an airplane and traveling!

Much as everyone teases me about my "antibacterial bubble", it's for real folks... did you forget... I have a cancer of the immune system!!!

So this July, we opted for a much tamer trip to the Kern River, in our own clean RV :)
I even went in the "public" river and threw "caution to the wind" (as my dear (deceased) mother would say) and I went in the river!! Not just toes... full body immersion!!! so there!!! Take that Myeloma :)

But heck, I've gotten lax on my sterilization policy in general, seeing random students, sometimes even shaking hands, etc, as I've been feeling pretty good this past year, and have very successfully fended off the germs well.... even withOUT a flu shot!!

3 survivors we are!

Cancer? not us!

 Scott doing a little fly fishing

 Here I am floating in the "raging rapids"

pretending I don't have a care in the world

pretending my immune system is strong

leaving my antibacterial bubble behind

So serene and beautiful!

I actually felt "normal"

for just a bit...

Ha! little did I know, Myeloma was roaring back...

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

3 Years ago June was a month of BIG events...

Whoa!!! June zoomed by and here I am moments before the clock ticks into July 2013!
Honestly... I am so over CANCER (especially me having cancer), that I have psychologically separated myself from this wonderful blog of mine :/
Guess I just don't want to think about IT and focus on IT much anymore!
Sorry to have let slide my commitment to write a least one blog entry a month to those of you still reading and checking in with me.

I have mentally moved forward (rather, pretended to) and have learned to move forward with the idea tentative, fragile health.
No doubt, I KNOW my current and future reality...
No doubt I think about it, but I try to not waste much time perseverating on the When, What, Why, How of my eventual, impending coming out of remission.
I have somewhat accepted the idea of a much shortened life, accepted the idea that any day, any blood test, any ONCOLOGY appointment can mean I am slipping away from the precarious cliff of health that I am wobbling on...
I try to direct my energies to focus on the NOW, not the WHAT if, and the eventual WHEN!

June seems to always be so full of milestones and anniversaries... in so many ways for me.
It's the end of a beginning
And the beginning of a new end to come
As June always represents some sort of graduation or commencement of something or someone for me... since I have always lived in the academic world.

I have been blessed with surviving another year in relatively good health, which allowed me to continue to pursue my mission of "Saving the world, One student at a time"...
I have a beautiful (6 months new) office, with one of the BEST views on campus!

But, June also represents so many cancer "graduations" for me-
THREE years ago June 2010, I walked away from my college's graduation having no idea what was in store for me that June, July 2010...
I was heading into a complete UNKNOWN, as I was to begin "preparing" for my Autologus Stem Cell Transplant, and subsequent hospitalization/isolation at City of Hope.
From diagnosis 12/30/2009 to June 2010, I went from around 70% lethal cancer coursing through my blood to about 10%.  June, July now brought the final super intense battle to kick Myeloma's butt out of my universe!

Early June 2010 transitioned me from pill form Chemo (Revlimid) to hard-core IV Chemo
June 2010 began my being suddenly really sick from IV Chemo, then suddenly feeling really well
Mid June 2010 began daily Neupogen injections to pump up my white cells and boost those Stemmies up!
June 2010 began the thinning and eventual cutting off of my "goldilocks" hair
Later June 2010 MY life saving Stem Cells were harvested, processed and preserved for my July 2010 transplant process
Wow... June 2010 was 3 years ago!!! That was then, this is now... and, and, and... it's beginning to feel like a long time ago!!!!!!!!!!!

However, reality recently awakened my mental cancer vacation, as my last Oncology appointment earlier this month had a bit of unsettling news... perhaps why I delayed and stalled writing a blog entry .........

My Myeloma markers for my IGA Myeloma are now officially out of the "normal" range, bouncing above the high end of normal to the loud notation on my blood test results stated as ABNORMAL!!! ouch :/
Weird really... not shocking though, as I live in reality... I knew it was coming... it's been almost 3 years exactly since my STC.
And now that I think about it, it's EXACTLY one year I have NOT been on Myeloma fighting Chemo...
Yes Revlimid was my initial Myeloma eliminator, and Revlimid was my post STC maintenance ammunition

So what does this tell us... well guess I am creeping OUT of remission
My next blood tests later in July well be telling for sure; how fast Myeloma is creeping or raging back; how soon I will be back on a treatment plan...

But, life is to be lived NOW!
No waiting, no putting things off... I tell myself
I stop to smell the delicious scents of life daily
I taste my preferred flavors daily (those that chemo didn't spoil)
I smile and laugh often
I don't take too much too seriously
I keep it all in perspective, and encourage other to also
I try to surround myself with happy, positive people and life-embracing events
And I work on not letting CANCER control my life... for now, for sure!

Life and miraculous events embrace me all the time, and in the most amazing ways!
My 2011 rescue doggie Hanna "played it forward" and rescued (by calling my attention to) a days old baby sparrow on our porch last month! So delicate, so vulnerable, but so desperate to LIVE!
Rescuing creatures (and humans) is second nature to me, so I quickly picked up baby birdie and got to work saving his/her life...

This is BabyBirdie a few days after rescue

when heshe opened hisher eyes!

"Imprinting" on us, as the human bird family, began!

We will never know if Birdie's parents pushed himher out of the nest of if the poor little guygirl fell out..
Sadly we quickly discovered that Birdie had a sprained, twisted up neck, and didn't know hisher chances of survival... but that sure didn't stop Birdie from energetically trying to survive and thrive! Baby needed to be feed every 20-40 minutes, sun up to sun down, so life revolved around feeding Birdie and I sure didn't have a second to reminiscence about my June cancer anniversaries! We had to support Birdie's little neck to eat, until one day, heshe kinda balanced upwards and began eating in a semi-normal stature!

Now almost 7 weeks later, Birdie is thriving and flying around the house like a little helicopter. Neck is 100% normal and heshe is so happy, healthy and doing all the normal bird activities, but in our human environment! Birdie only knows us as hisher family and is totally "imprinted" on us, so releasing Birdie is not an option. Birdie flys to us, perches on our hands, shoulders, phones and seeks out pictures of us on the shelves to perch on! So funny!!!

 Birdie is almost "weaned" now
eating "bigbird" foods (grains, crushed dog food, fruits, etc)! 

We "saved" Birdie's fragile little life, but Birdie has given us far more than heshe will ever know!!! Life is so tentative and unpredictable... but so incredibly beautiful and breathtaking!
Birdie is now a full feathered beauty... and in a few months nature will reveal to us if he is a he or she, when hisher adult feathers come in! Here's the amazing website that helped me save Birdie's life: Raising an abandoned baby sparrow

Cancer can never take these simple joys away!
Nature's will to survive is a message to all humans

Birdie loves to eat from our hands

The tweezer mimicked the momma beak when feeding tiny baby Birdie

and heshe is so bonded to it

Crazy how I bought this flag long before Birdie arrived

and it now serves as a lively backdrop behind Birdie's house-

Not to mention, the simple message I live by !

And so.... it's

Hello July 2013!

Hello memories of my family saying emotional goodbyes to me at City of Hope July 2, 2010

Saying goodbye to me, in a small, sanitized hospital room, leaving me alone, in full isolation, in hopes of saving my life...

Hello brink of death Melpalan IV chemo anniversary July 3 and 4, 2010

Hello 3 year Stem Cell Infusion Transplant anniversary July 5, 2010

Hello 3 years of REMISSION anniversary!

Hello 3 years of many personal and professional "missions" accomplished!

Hello 3 years and counting!

Hello Myeloma... I'm still winning :)

=========================================

So enough about cancer!!!! ... here's my new blog all about Raising Baby Birdie!

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

Birthdays and Blood tests

April... you flew by! 
It's May 1st already and I didn't do an April blog!!
So here's my April update in May:

I had my every 2 month Myeloma status check on Alissa's birthday! (brought me good luck!)

Blood tests are semi-normal, but I can never seem to jump into the full NORMAL range on my "Whites" and a few other levels...
C'mon immune system, let's get with it please!

My oncologist noted I have a "band of restricted mobility of IgA Lambda... but nothing to worry about... yet...
IgG still low
IgM still low
IgA bumped into the normal range last blood tests prior to this month's tests... and now IgA is edging closer to the high end of normal... not a concern yet... but taking note, as I have IgA Myeloma.
This level jumped 200 points in 2 months...

When I was first diagnosed, my IgA was something like 5600 !!!
So when this number spikes past the "normal" range to a concerning level...
It's Chemo time again...
But that's then, and hopefully a very future then ... so let's get back to NOW!

Happy Birthday to our Amazing Alissa

 Enjoying a Mom Daughter zoo date for her 25th!

 

Back in the day, our lil cutie!

 with 2 of her best friends, Tripod and Panther

My lil PonyPal then and forever!

with sweet Mickey, who had been so abused

in his life prior to us "rescuing" him

and now... she's all grown up... (well sort of!)

with our rescue doggie fan club


And here she is
College Sorority Girl

 Voted for Fraternity "Sweetheart" !!
But always our #1 sweetheart of a daughter!

So far Alissa is cancerless!!!

3 of the 4 of us
have been diagnosed with 3 different cancers, all unrelated!

But cancer doesn't stand a chance with her.... ever ever!!!
Loooooove you forever and ever daughtery :) 

Cheers to May!
Jim's our May baby and an almost 14 year cancer survivor!
Wow! Go Jim!
Had it not been for aggressive prostate biopsies leading to aggressive prostate surgery in mid 1999...
chances are... Papa Jim would not still be here...
Happy long time survivor's birthday to Jim!!

Jim's fan club, best friends and ranch assistants!

 

And here we are, 2 cancer survivors, 

having a bit of fun in the sun

Looking forward to an infinite amount of fun family times!

Cheers to life

Cheers to fun

Cheers to health

Cheers to cancer not standing a chance with us!

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

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! 

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"

 Please click HERE for the video article:

New hope for multiple myeloma patients

GREAT NEWS!

GREAT INTERVIEW!

THANK YOU IMF



 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!

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!

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!

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!

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!

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!

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!

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 !!!