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

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


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.

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!

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 
Magali Thorobred Farm, Santa Ynez, CA
with Mr Olmodavor the handsome Thoroughbred stallion

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...



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...

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:

with my dear friend and avid supporter

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 
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 :)


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" !

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!

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 !!! )

Thursday, March 15, 2012

Myeloma + Treatment = Chance of Secondary Cancer--> o joy!!!

Revlimid Prescribing Information Updated To Include Secondary Cancer Warning

No CommentBy 
Published: Mar 15, 2012 3:43 pm; Updated: March 15, 2012 11:30 pm

The U.S. Food and Drug Administration has added a warning to the prescribing information for Revlimid stating that patients being treated with the drug have an increased risk of developing a second cancer.
The warning has been added in two parts of the prescribing information.
In the upfront ‘Warnings and Precautions’ section, text has been included stating that “Higher incidences of SPM [second primary malignancies] were observed in controlled trials of patients with multiple myeloma receiving Revlimid.”
Later in the document, the warning is expanded to explain that studies have shown that multiple myeloma patients treated with Revlimid (lenalidomide) as well as melphalan (Alkeran) and stem cell transplantation were more likely to develop a second cancer than those receiving comparable treatment without Revlimid.  In particular, the Revlimid-treated patients were at higher risk of developing acute myelogenous leukemia and Hodgkin’s lymphoma.
The Food and Drug Administration (FDA) recommends in the prescribing information that physicians monitor patients being treated with Revlimid for the development of second cancers and take into account both the potential benefit of the drug and the risk of second cancers when considering treatment with Revlimid.
Revlimid is marketed by the U.S. pharmaceutical company Celgene (NASDAQ: CELG).
Concerns about a potential Revlimid-secondary cancer link first emerged at the American Society of Hematology annual meeting in December 2010, when results were presented from three trials that showed higher rates of reported second cancers among myeloma patients treated long-term with Revlimid therapy compared to other patients in the same studies.
Despite extensive follow-up research and investigation, concerns about Revlimid and secondary cancer persist. They are reflected, for example, in the recent International Myeloma Working Group consensus statement on maintenance therapy, which cites the risk of secondary cancer in its discussion of maintenance therapy with Revlimid (see related Beacon news).
The recent change in the U.S prescribing information for Revlimid was preceded earlier this year by a change in the European prescribing information for the drug.  The European change reflects the results of a safety review by the European Medicines Agency, which was concluded last September (see related Beaconnews).
The warning added to the European prescribing information is more extensive than the warning added by the FDA.  In particular, the European agency added three paragraphs to the section on “other special warnings and precautions for use.”
The first two paragraphs note that, in both previously treated as well as newly diagnosed multiple myeloma patients, treatment with Revlimid has been associated with a three- to four-fold increase in the rate of second cancers versus what was observed in the trial control groups.
The third paragraph then states, “The risk of occurrence of [second cancers] must be taken into account before initiating treatment with Revlimid.  Physicians should carefully evaluate patients before and during treatment using standard cancer screening for occurrence of second primary malignancies and institute treatment as indicated.”
The U.S. Food and Drug Administration began its own safety investigation of Revlimid – and alsothalidomide (Thalomid), which is chemically similar to Revlimid – in April 2011.  An FDA representative contacted by The Beacon was unable at this time to clarify whether the recent change in Revlimid’s prescribing information reflects the conclusion of the agency’s investigation.
Neither the FDA nor European authorities have thus far made any changes to the prescribing information for Thalomid related to secondary cancers.
At the 2011 American Society of Hematology meeting this past December, Dr. Antonio Palumbo of the University of Torino in Italy summarized results of a retrospective analysis of the risk of secondary cancer associated with Revlimid and thalidomide treatment (see related Beacon news).
The results of the analysis indicate that treatment with Revlimid in and of itself may not increase the risk of secondary cancers.
Instead, there may be an interaction between treatment with melphalan and treatment with Revlimid (or thalidomide) that increases a patient’s risk of developing secondary cancers.
Dr. Palumbo also presented data showing that the risk of developing secondary cancers when treated with Revlimid is generally lower than the risk of a number of serious side effects that can occur during common myeloma treatment regimens.
For more information, see the text that was added to the U.S. and European prescribing information for Revlimid, which is included below, or the full U.S. prescribing information and the full European prescribing information.
Additionally, please see the complete compilation of Beacon articles with information on the Revlimid safety controversy.
Addition To The U.S. Prescribing Information For Revlimid
Second Primary Malignancies (SPM): Higher incidences of SPM were observed in controlled trials of patients with multiple myeloma receiving Revlimid.
Patients with multiple myeloma treated with lenalidomide [Revlimid] in studies including melphalan and stem cell transplantation had a higher incidence of second primary malignancies, particularly acute myelogenous leukemia (AML) and Hodgkin lymphoma, compared to patients in the control arms who received similar therapy but did not receive lenalidomide. Monitor patients for the development of second malignancies.  Take into account both the potential benefit of lenalidomide and the risk of second primary malignancies when considering treatment with lenalidomide.
Addition To The European Prescribing Information For Revlimid
An increase of second primary malignancies (SPM) has been observed in clinical trials in previously treated myeloma patients receiving lenalidomide [Revlimid] / dexamethasone (3.98 per 100 patient-years) compared to controls (1.38 per 100 patient-years). Non invasive SPM comprise basal cell or squamous cell skin cancers. Most of the invasive SPMs were solid tumour malignancies.
In clinical trials of newly diagnosed multiple myeloma, a 4-fold increased incidence of second primary malignancies has been observed in patients receiving Revlimid (7.0%) compared with controls (1.8%). Among invasive SPMs, cases of AML [acute myeloid leukemia], MDS [myelodysplastic syndromes] and solid tumours were observed in patients receiving Revlimid in combination with melphalan or immediately following high dose melphalan and ASCT [autologous stem cell transplant]; cases of B-cell malignancies (including Hodgkin’s lymphoma) were observed in the clinical trials where patients received Revlimid in the post ASCT setting.
The risk of occurrence of SPM must be taken into account before initiating treatment with Revlimid. Physicians should carefully evaluate patients before and during treatment using standard cancer screening for occurrence of second primary malignancies and institute treatment as indicated.

Great Myeloma article on trying to find our "new normal"

headed to the Cardiologist tomorrow... I can't get rid of these chest pains, breathlessness and sometimes stabbing/jabbing chest pains ....

Saturday, March 3, 2012

Too Many, Too Much, Too Overwhelming

I'd like to write another "happy" post like my last one, but I am just overwhelmed by so many people in my life with medical challenges:

A dear family friend (who's like a brother to Jim and me, and another dad to Scott and Alissa) recently suddenly, shockingly passed away from unexpected complications of heart surgery

Another dear family friend is battling uterine/endometrial cancer, and not enjoying the ravages of chemo side effects and losing her hair

I cannot believe how many of my girl - friends are currently battling breast cancer, or in recovery from various types of life-saving treatments... trying to wrap their minds around how cancer destroyed their beautiful bodies

A good friend's Dad (from my high school days) was recently diagnosed with... drum roll... you guessed it...
Multiple Myeloma!

My dad took my sister to ER the other night... she remains hospitalized with unusual electrolyte (and other) blood levels... guess what specialist was sent to her room today.... yep... a Hematologist

Our beautiful doggie Molly is hanging on (barely) as her sinus, head, nose cancerous tumor grows bigger by the day... but we are too torn to make the euthanasia decision when she still follows us and her doggie buddies around the backyard

Seriously, look at the size of that awful tumor on Molly's head
And no, that's not her skull or bone structure
It's a stinkin tumor the size of a baseball !!  :(

I continue to correspond with many cancer comrades around the country, referred to me by family and friends. I am thrilled and blessed to have so many new friends and pen-pals.
I just wish the common thread of introduction wasn't CANCER

I just found out from the sweet daughter hosting a (IMF) Myeloma wine-tasting fundraiser for her mom, who has.... of course... you guessed it.... Myeloma... they grew up around the block from where I did !

Ok brilliant scientific researchers out there...
3 of us neighbors (my current location) within walking blocks of each other ... have Multiple Myeloma
3 of us newly discovered past neighbors from the other Valley, have Multiple Myeloma

And we still can't even process the "bad movie" we starred in just this past January... did our son Scott really have bladder cancer surgery???

I'm having chest pains and difficulty breathing... is it physiological or psychological?
I have a Dr's appt next week...

But I will end on a happy note, with a GIANT sigh of relief for my incredibly BRAVE buddy Brian, who's recent brain cancer surgery has been declared SUCCESSFUL !!!

And a positive shout-out to my COC colleagues waging their cancer battles too... may your remission good-news continue forever!!!

Sunday, February 5, 2012

Remission = Back in the Saddle again!

July 4, 2010 =
Receiving Myeloma killing Melphalan Chemo
at City of Hope Hospital

July 5, 2010 =
Receiving my life regenerating Stem Cells
at City of Hope Hospital

February 4, 2012 =
Back in the Saddle again
for the first time since 2009!

Mom and Daughter July 2010  =

Mom and Daughter February 2012
Today and yesterday were Monumental days
in the battle of dominating Myeloma.
This weekend = absolute winning for me!

This weekend 
my daughter and I
rode our horses
the very first time
Myeloma invaded our lives
in 2009

I cried my heart out
while in treatment-isolation 
City of Hope Hospital July, 2010

I never thought I would be able to
ride a horse again.

But I did!
19 months after my Stem Cell Transplant!

My life is now complete

(and Scott's cancer is considered "cured")

There is no better view of life than this view


Wednesday, January 18, 2012

December + Biopsies = Cancer

Friends are advising us to stay away from Doctors around New Years, staying as far away from medical facilities as possible--- and here's why:

December 2009 = Bone Marrow Biopsy for me
December 2011 = Cystourethroscopy for my son Scott

December 30, 2009 = I am diagnosed with Multiple Myeloma
December 29, 2011 = Scott is diagnosed with a Bladder mass/tumor

Surgery pre-op appointment
Little did we know the seriousness to come

January 2010 = Trying to begin to process I have a BLOOD CANCER
January 2012 = Trying to begin to process that Scott has BLADDER CANCER

January 2010 = I begin powerful Steroids and Revlimid Chemotherapy
January 2012 = Scott has surgery to remove the bladder mass/tumor

Our smiles are deceiving...
This was before we knew the biopsy results

We're all full of smiles of optimism
Then a week later...
the Biopsy news Revels the Tumor WAS Cancerous

It's all so unbelievable!
2012 Scott goes in for "benign" tumor removal surgery. Biopsy diagnoses cancer. Thankfully declared "cured" after surgery.
2010 me, incurable cancer, treatments for life... 

Can someone please help us make sense of all of this...

And the cancerous theme continues:
Molly our beautiful doggie is hanging on... sinus/bone cancer hasn't won yet, but her tumor is tennis ball size now

This pic was taken a month ago; tumor is much bigger now :(
She's such an amazing doggie!
Molly still basks in the sun and tries to play with her buddies,
even though she's hemorrhaging from the nose

Another close family friend has uterine/edometrial cancer and begins chemo later this month
Brian (my student) is still battling his cancer that migrated to become brain cancer
Another close family friend just had a double mastectomy

Can anyone help us make sense of all of this?

My Story... How my MM was diagnosed

October/November/December 2009...

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

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

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

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

January - June 2010

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

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

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

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

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

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

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

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

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

What is multiple myeloma?

What is multiple myeloma?

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

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

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

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

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

Multiple myeloma is characterized by several features, including:

Low blood counts

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

Bone and calcium problems

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


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

Kidney problems

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