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

Monday, December 30, 2013

4 years and counting... still counting... will continue to count... never stop counting!

December 30, 2009
Is a day I will never, ever forget...
I have forgotten most of what was actually said that day...
That day I was diagnosed with Multiple Myeloma cancer
December 30, 2009, the day my life changed forever.

Lot's of important words were spoken, but I heard very few of them
Jim heard very few of them
Mostly we heard: "I am so sorry... YOU HAVE CANCER"
Your bone marrow biopsy results were not good
The samples showed you have 67% Cancer

You have cancer... a blood cancer
Multiple (? what ?) Myeloma (? who ?)
In the bone marrow
In the blood plasma
High risk cancer
So sorry...

You need treatment immediately (seriously?)
Platelets, blood, dangerously low white count
Immune compromised (like bubble girl status?)
Prescriptions are ordered for you (like now? ... like today?)
Tests, scans, bone marrow, blood samples, anemia, platelets, CBC's, Immunoglobulins, M-protein
Blah, Blah, Blah, Blah
Multiple Myeloma (my new vocabulary word!)
Blood Cancer (no way... not me... I'm healthy, I've lived healthy, I did all the right things!)
Multiple Myeloma
Immune Compromised (huh?)
You are not well (I'll just eat better... I promise!)
You need to be treated now (as in now? as in it's almost New Year's Eve !)
Immune system cancer (you cannot risk getting sick from others)

So sorry, my kind oncologist apologized
So sorry to spoil your holiday
So sorry your cancer is so serious
You have High Risk Multiple Myeloma Cancer (I'm too young... I have too much left to do!)
We are here if you need anything
Call us if you are not feeling well... go directly to Emergency... don't wait...
Let's get your medications ordered
Multiple Myeloma
Blood Cancer
Sick... need treatment now
Stem Cell Transplant
Multiple Myeloma
Blood Cancer

My head is spinning
This must be a mistake, my results surely were confused with someone else's
I cry
I laugh
I say NO WAY, Not Me!
It's all so surreal
Jim is very emotional, his eyes are teary
He is speechless, just nodding
I'm stunned, numb, having a true "out of body experience"
OMG I have to tell my family... I have to tell people, a lot of people... I, Julie the Invincible, has CANCER!
I cry
I laugh
I am numb
~ ~ ~ ~ ~
 Here we are back in 2009
when I had NO idea 
of the monster multiplying within me!
 ~ ~ ~ ~ ~ ~

December 30, 2013
Yep, cancer is real
Sadly, I now know what all those medical-cancer words mean
I get it... I Have Cancer
Incurable Cancer

But I am still here Myeloma!
4 years since that shocking, life altering conversation...
I made it 4 years since diagnosis!!

And you know what Myeloma??
I plan to be here for a long time!!
I plan to outlive you Myeloma!!!
My 2014 New Year's Resolution is to outlive you Myeloma!

One sleepless night (which is really every night) I had a sudden thought...
I'll go back to my pre-cancer, pre-Myeloma self-visual of being that little old carefree lady walking her little old pony down the road... thinking it's a goat, or a chicken, or a dog, or a giraffe! 
I'm planning to be really, really old... again!
Yes! I am planning to live a long, long, long time!
Take that Myeloma!!!
That's my 2014 New Year's Resolution!

Happy, healthy, successful, playful, living life to the fullest, New Year to all of you!!

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

Wednesday, December 11, 2013

Current stats... just go away Myeloma

Hello everyone, and happy almost holidays to all of you that follow my blog :)

December is a month of reflection and recollection for me, with a lot of original Myeloma diagnosis milestones:
Dec 14, 2009 first Hematology/Oncology (I'm in the wrong place) appointment
Dec 18, 2009 first surprise, why me, shocking bone marrow biopsy
Dec 30, 2009 totally unexpected Myeloma C A N C E R  diagnosis

I am feeling a bit melancholy... as being re-diagnosed and out of remission so soon has hit me differently than my initial diagnosis... but enough of this... and on to my recent statistics.

Had my monthly oncology appointment on Monday and even with being back on Revlimid chemo and Dex steroids and all the other meds... my Myeloma markers still increased:

Specifically my IgA immunoglobulins are now 1890, up 400 points from just last month, and more than double what they were this summer when I came out of remission. On Kaiser's scale, normal range is between 70-400

My M-protein (M-spike) is now 1.4, up from zero after my autologous stem cell transplant in July 2010.

My oncologist wants to double my Revlimid dose, (from 5mg to 10mg), but I said no thank you, let me enjoy the holidays without increased side effects and possible complications. My initial 2010 treatment started at 10mg, with somewhat bearable side effects. But when we increased to 15mg, I wound up with a serious rash and other dangerous side effects, so we quickly backed down to 10mg.

Onward the battle goes...

And when this awful CA Artic Chill disappears
I'll join my darling pups for some sun !

They make me smile

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

Friday, November 22, 2013

Happy Birthday to me... some Refections and Realities

Happy Birthday to me! I made it another year!

11-22-2009 turned the big 5-0... then one month later...
12-30-2009 officially diagnosed with Myeloma
11-22-2013 made it 4 years since cancer invaded!!!

So on this 4 years post-diagnosis-Myeloma-is-now-back-birthday, I can't help reflecting a bit on Myeloma's impact on my life... (I probably bore you with all my reflections lately!) Truly, I have always been a very positive and optimistic person. Cancer hasn't really changed that very much. Those that really know me, know this. I am basically the same Julie I was all my life, just a bit tamer, more tired and fatigued now, and honesty... more limited in overall mental and physical energy. Tamer also, as I am not quite as sarcastic and hilarious as I used to be. Cancer took a bit of my silliness and frivolity away :(

Many question how I can stay so optimistic, positive and happy (not to mention, still working), under current out of remission status. ... which leads me to a funny sidebar here: when people who haven't seen me in a while ask, "How Are You Julie", and I reply, "ok, .... but not sure if you know, ... I am out of remission now?" Often, sadly-funny, their reply is, "Oh that's WONDERFUL news, so glad to hear this!".... Huh???!!! ... oh boy!!!, they must have totally misunderstood what I said, and completely missed the context of "OUT". Most often, I just let it pass by, and giggle internally to myself, as I know they would be mortified if they knew the mistake they made! But if the moment allows, I say... "I don't think you heard me correctly... "my cancer is BACK, and I am OUT of remission" ... blah blah ... and they are then horrified of their mistake... we laugh, chat and "air" hug.

Anyway, back to what I was jabbering about... so on this 4-years post cancer diagnosis birthday, I am still positive, happy, optimistic and very much alive, and living in the moment as much as I can! (Especially since I took my Dex steroids a few hours ago! wwhhhhheeeeeeee my heart is pounding and I think my head is going to blow right off my brain stem!!!) I see everyday as a bucket list day!!! No more waiting!!!

What HAS changed since my cancer diagnosis and current OUT of remission status?
I no longer try to be all things to all people.
I am ok now saying, NO thank you. Not easy at all for me, but I have much clearer boundaries now.
I no longer have the Julie-can-do-it-ALL-agenda.
Less is more for sure now... what little I do now, is big!
I no longer feel the need to accomplish everything and appear to be handling everything.
I have given away power and control and truly live today, for today, and I am a bit more me-oriented.
I am not trying to be wonder-woman anymore.
I don't get a lot accomplished every day... and I am learning, that's ok.
Have another cup of herb tea Jules!

ha ha! posted to my facebook by a dear friend of mine!
But... I am not really ok with not being ok, but I do accept my status more realistically now.
I don't like not being ok, I really dislike feeling sick all the time... but I have little control of that now.
If I don't feel well, I don't push myself.
I no longer feel like an incompetent loser if I don't do it all on the home-front or work-front
I used to impact a lot of students per day... a lot!
If I impact one or two or a few, that's ok... I still matter in this world.
I stay in bed longer, if I feel like it
I stay in PJs-lounge-clothes longer (like now :)
I don't always do "full make up"
I sit and gaze and contemplate more, and process life more, and philosophize more, and think about the what if this, what if that, a lot more now.

I also have some regrets of things I've previously put off... as now I don't have the physical energy to do them. Oh well, maybe I will have more energy again one day... thank goodness my horses are middle-age and seniors now, and so is Jim!!! ahahaaa :) We're all moving a bit slower now!

Some people don't like my reference to a "Bucket List", but I think it's kinda funny. And I am all about funny! Lists and goals are healthy and forward thinking! I really am making a list... and it's not the list most of you would think of when thinking about an "accomplish before you're gone list". Mine is comprised of simple things. Simple pleasures, simple goals, simple activities, simple events, simple fun, living life today. I don't need chaos, complications, challenges or being featured on the 6:00 o'clock news.
Seriously, NO MORE CHALLENGES for sure!!
Hello Myeloma... did you hear me... I said NO MORE CHALLENGES!!!

Ok, on to the (slow motion) birthday celebration!!!!!!!!!!!!!!!!!

I wonder how many more I have?
Calm down friends, I am not freaking out! It's an interesting thought to ponder! :)
Sing along now...

And did I mention... I CHOSE to NOT begin all the meds until AFTER 11/22 !  I just wanted one more day of semi pretend normalcy... but ha! Dex you are already making me crazy right now!

Cheers to Revlimid and friends tomorrow for breakfast, lunch and dinner :)

Thank you for reading and caring and posting heart-warming, funny and supportive comments xoxo

Here's a simplified, but great explanation of MM:

What is multiple myeloma?

Multiple myeloma is a cancer of the blood. It affects the part of your bone called bone marrow. Your blood is produced in your bone marrow, which is made up of many different types of cells, including red blood cells, white blood cells, platelets, and plasma cells.
A plasma cell is a type of white blood cell that normally produces antibodies to fight infections. Patients with multiple myeloma have cancerous plasma cells, also called myeloma cells, which replace and form tumors in bones and, occasionally, in various soft tissues of the body. Myeloma cells may also prevent the bone marrow from making enough red blood cells, white blood cells, and platelets.

How multiple myeloma may affect you

Myeloma cells multiply quickly and can build up in the bone marrow. When they do, they prevent bone marrow from making enough blood cells for the body to fight infection and other diseases. Prior to diagnosis, patients with multiple myeloma may experience a number of symptoms that lead them to seek medical attention. However, some patients may not have any symptoms or their symptoms may be vague. Multiple myeloma is often discovered as a result of laboratory testing or diagnostic imaging performed for other reasons, such as a routine blood test.
Common signs and symptoms of multiple myeloma include:
  • Bone pain and broken bones
  • Nausea and vomiting
  • Weakness and tiredness
  • Frequent infections
  • Nervous system problems
  • Anemia
  • Hypercalcemia

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

new treatments for multiple myeloma have become available - See more at:

Monday, November 18, 2013

Chemical Warfare part 2! Mission = Remission Again

Start running Myeloma!!!
Chemo's coming to gobble you up again!!
So we picked up some of my prescriptions, after my treatment planning appointment Nov 18... I couldn't help but laugh when I tried to organize all these meds in my "pharmacy drawer". There's a lot of meds here again! It's 2010 all over again... but actually I am grateful for the deja vu medication treatment routine, as I now know how to manage the side effects from each one. I take some in the morning and some at night. Some with certain types of foods. Some without food.
Can you guess which I take WHEN?

Frontline attack #1
Fortunately at a low dose to begin with!
This Rx comes from the Kaiser "specialty pharmacy" in San Francisco
They are so wonderful with personal calls, and sending it FedEx next day!
Hello again my friend Revlimid!
We'll be friends for 3 weeks on, 1 week off.
Cost is unbelievable! I just received my new Rx!
(and the 2013 price is even higher than my 2010-2012 (of course!)
Ready for this... $9,283.57 per 21 day cycle! OMG!!!
Interesting article here regarding cost and survival

The magic hot pink pill to prevent allergic reactions and hives from Revlimid
Back in 2010 when they tried higher doses with me I had huge allergic blotches and rashes...
I didn't realize how serious it was at the time

Good ol Aspirin to prevent blood clots
and deep vein Thrombosis from Revlimid

ROID RAGE right here !
I have a love/hate relationship with you Dex!
 5 cute lil pills per dose, but dang they do a number on my system!

Omerprazole to prevent ulcers, acid reflux, etc
These I have to remember to take longer, as the Dex roids have been
wreaking havoc on my GI system 

Antiprotozoal to prevent Pneumonia and other cooties!
It has the consistency and appearance of yellow preschool paint, with a Citrus taste
Quite pricey at over $2500 per Rx

Antiviral to prevent Shingles
I forget if I did this pre and post stem cell transplant in 2010

And I think I will add B-12 and a daily vitamin to this chemo cocktail as I keep getting sick!!! ggggggrrrrrrrrrrrrrrrr

How do I feel overall? Kinda spacey, mentally worn down and a bit sad. Seems like I am sick every week now. (Home sick again now! ugh!) Most of the time, I feel dehydrated, dizzy, nauseated, weak, tired, GI yucky stuff and nasal stuff etc!!!!  Just go away Myeloma!

I really thought I would be "different" and get remission for a long long long time... instead, Myeloma came back fast and from all the studies I read... my clock is ticking faster than I really allowed myself to absorb before. Am I lucky if I have 10 years from diagnosis? 

2009 + 10 = 2019
Tick... Tick... Tick... Tock

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

Tuesday, November 12, 2013

11 12 13... Numbers and Nonsense

Just had to write a blog entry on 11-12-13 !!!

Not a whole lot to update on except that I started my Dexamethasone steroids last Friday with a few very funny adventures! My Docs are starting me out slow at 20mgs weekly (as we are still consulting about my treatment options), compared to my 40mg 4 days on, 4 day off back in 2010.
Actually I was supposed to have already completed 2 - 3 cycles by now, but all my recent illnesses prevented that. So my first round of Roids was quite the sweet ride! My body revvvved up and I actually felt really good! Surprisingly, very good as a matter of fact!

I took the 5 pills
Ate some breakfast
And waited to freak out!

No freak out! Just revvved up! Felt good to feel good for a change! I've been waning and decreasing in energy lately, feeling rather fatigued often and always sickly in the last several months since Myeloma has resurfaced and dragged me down again.

Jim and I went to lunch and I was actually hungry, but I didn't steroid-order the whole entire menu... just a tame healthy greens salad and spicy edemame. I remember now from before, I liked foods with a bite, while on Dex. We then ran a few errands, came home, did our ranch chores... and I was stilllllllllll fullllllllllllllllllll of ENERGY !!! Whoooo hoooooo, let the roid-rage begin!

By this time, is was dark out, but that didn't stop me from walking laps and laps and laps and laps and laps around the barn. I registered close to 11,000 steps on my pedometer for the day!! Yippeee for feeling good!! Took a Benedryl to send me off to sleep... and prevent me from crazy steroid snacking!!! No "moon-face", roid-belly for me!!!

Woke up feeling a bit dizzy and dehydrated with a slight headache, but overall ok! With how pumped up I was feeling, Jim and I decided to venture out for more errands and drive my sweet Bug!!! Generally I would be hesitant to compete for road space on a Saturday in my "tin can Beetle" with the crazy fast drivers in our area, but Dex gave me clutch-shifting confidence and off we went!

I don't even remember all the errands we ran, but we finished off with a refreshing stop at Jamba Juice and that's when the roid-rage strength fully kicked in!!!
Since my lil ol Bug is a 1974, no remote locks of course... so when I went to unlock my door manually... I totally BROKE THE KEY IN THE LOCK!!! No Joke!!! Broken right in half!!!!
Fortunately I had previously let Jim in first on the passenger side (as he was holder of the Jamba Juices since there aren't "modern" conveniences such as cup holders in ol Beetles!!!), so he was already inside when I shrieked, "OMG!!!! Jim!!!! OMG!!!! I frikn broke the key in the lock!!!!!!!!!!!!!!"
Jim thinks I'm teasing, as I've been kinda silly all day, but I managed to pull out the broken pieces and show him the broken evidence!!! He can't believe what he's seeing in my hand!!!

Roid rage at it's best right here !!!! CRAP!!!!!!!!!!!!!!! what to do now!!!

I called our son Scott, and thankfully he was home and was able to find the even older thinner SPARE key right where I thought it was, and he came to rescue us!!! Can you even picture this? Jim's sitting in the Bug sipping his Jamba juice laughing and shaking his head, and I'm sitting on the curb by a planter, thinking OMG, this really can't be happening! I BROKE the ignition key in the door lock!!!! We can't drive!!! We're hostages of an ol relic car I bought on a feverish whim!!! We're stuck in a parking lot!!! What if we were far away??? What is wrong with me, I ponder!!! Getting an antique car and thinking nothing of it... thinking it will be no problem, like driving around "back in the day" won't even be an issue! Hello Julie... aren't you too old for these silly adventures... you've got CANCER and you're embarking on some serious medical treatments and you're driving around in an unpredictable 40 year old VW beetle!!

Jim distracts my thoughts with, "Hey Dear... what's that wildlife that just crawled by you?" Whaaaaat? Where? OMG I look to my left on the curb, and off slithers a giant shinny cockroach!!! I think it had crawled right up and over me!!!! OK, that does it... I'm done with silly adventures... take me home!!!!Scotttttttt, hurry and come get us!!! Ha! from a broken blue bug to a slithering bug!! ahahaa oh boy my life!!!!

It all turned out ok, we made it to the locksmith in time to make additional keys (that I just happened to have with us that I had previously ordered on eBay). I fully began to process the difference between a modern car with all the convenient technological features and a super basic classic OLD car! Seriously... note to self... what was I thinking????

But wait, there's more......... on the way home... the turn signals stopped functioning, the gas gauge stopped working and the G for Generator stayed on!!!! Ok, cute lil baby blue bucket list bug... you're going to the doctor ASAP! And there she sits as I write this days later... she's gettn a mechanical make over!!! And don't come home until you're fully functional ol girl!!!!

Next day, my energy began to wane more, my headache intensified and I began to feel that ol after-roid-rush-downer-yucky feeling... but "cowgirl up" as it was a beautiful day, and we had previously planned a ranch day visit day for our dear family friends and their sweet little girls.

First up,  "Apple picking" and stall mucking lessons with Alina

Then Alina gets grooming lessons with sweet, patient Boots

It's the "A" team girls:
                Alissa and Aubrielle                                         Alissa and Alina

aawww.... Ashley, Knuckles and Aubrielle

Cowgirl Alina and RedBear!

 And to finish off my roid-rage weekend, 
I took Alissa for her first ride in bucket list baby blue bug 
Gen-light on, no turn signals, and seemingly NO gas!
ok electrical system... time for a make over!

Off to the Doc you go Miss Blue

 And it was all downhill from there for me, 
as I bit the dust on Monday and Tuesday with another intestinal thing...
Maybe I'll make in to work tomorrow...

Thursday, it's off to my City of Hope Doc and then my local oncologist Doc on Monday...

What will they have in store for me?????
Will it be...
Revlimid again?
More Dex steroids?
Prep for another auto-stem-cell-transpant?

I'm trying to remain positive, have a bit fun between the days and days and days of not feeling well.....
Can I please just wake up from this cancer coma??? 
You've got the wrong girl Myeloma... didn't you get the message???

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

Wednesday, November 6, 2013

Jelly Beans and Other Thoughtful Thoughts and Realties

Just in case you're tired of my silly musings...
Here's some inspiring and thoughtful thoughts from others:

Our Lives Represented in 
Jelly Beans

And Thanksgiving diagnosis reflections
by another blogger diagnosed with the evil Myeloma:

Sean’s Burgundy Thread: Dear Multiple Myeloma-

 "Dear Multiple Myeloma", Sean writes, "Do you remember me? 
I am the poor sap that you decided to terrorize during Thanksgiving week of 2008... "

 And so.............

Ugh! I've been sick more than well recently and I am not fond of not feeling well.
Everyone thinks I am so strong for handling cancer as I have, but honestly friends... I really am not that strong at all. I am strong when I feel well. I am not that strong when I don't feel so well. Suffering for days with a fever leads me down philosophical roads of unsettling realities...

These last 2 high fever viruses that attacked me have awakened NEW realizations of OLD realities... that my immune system really is compromised due to an "immune system cancer", and naive me, I really do have to continue to be ultra CAREFUL, make that PARANOID of all the germs out to attack me. Duh! Note to self!!

I've tried to trace the trail of my recent illnesses, and the only thing I come up with is that I slacked off on staying in my sterile bubble. I tried living life somewhat "normally" again...
I slacked off a bit and shook some hands, hugged some friends
I slacked off a bit and opened some doors without a protective tissue
I slacked off a bit and ate at buffets and restaurants and risked cross contamination galore
I slacked off a bit and threw caution to the wind and went places, had fun, commingled with people in public places.
I slacked off a bit and started scheduling appointments with random students.
I slacked off a bit by being "normal", and paid for it... dearly... with piercing pounding headaches which lead to high fevers for days on end, which lead to crazy viruses in my upper and lower body... I will spare you the details.

I felt awful and I don't do well when I feel awful.
Awful takes the helium out of my happy filled balloons.
Sorry, I really am not that brave and strong when I don't feel good.  
I have learned my lesson:
Hello stupid antibacterial cautious bubble life...AGAIN
Hello to being forced to accept I am not a well person and facing up to the reality that I won't ever be "cowgirl-well" again.
Hello to being sick of being sick, but having little choice in the matter.
I don't like not having choices
I don't like external factors controlling me
I don't like being sick and I don't do well not being well.
I have never been of the victim mentality and I don't like being victimized and controlled by cancer!
But, I am better now and I do thank what minimal immune system I do still have, for battling on my behalf!

Every other day, my sweet hubby Jim would pick
some of his spectacular roses to boost my spirits
and help me feel better!

Ugh! I haven't even begun my Dex steroid meds yet, but I will this Friday as I have an oncology check up on Nov 14 with my City of Hope oncologist, and then another on Nov 18 with my local oncologist (love them both!)
I think I should know by then, what treatment plan they have in mind for me...
Just in time for my November birthday,
Cheers! Happy November cancerous birthday to me!

So on a happier note, on Saturday when I could finally walk without being dizzy and dared being away from the bathroom, Scott said... "Mom, let's go for a drive in your bug! That will make you feel better!" and feel better it did! Here's to our first 5 mile road trip (to Coco's and back lol!) in the "baby blue tin can bug", with Scott driving and the rest of us praying we survive!

My bucket list baby blue bug makes me happy :)

And Birdie makes me so happy too! 

And of course!!! Everyone and Everything else in my life makes me happy!!!
I am blessed and I am grateful for so much
You can't take that from me stupid cancer!!!

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

Monday, October 28, 2013

Deja Vu 2010 - RoidRage Rerun and other Treatment Plans

Hello again my Myeloma munching Dexamethasone... you are coming back into my life...
Paired with your friends Revlimid? Velcade? Cytoxan? and all those other cancer chomping chemos...
Ugghh... here we go again...

Hey body that has failed me ---> I'm not looking forward to feeling yucky again!
I played being well for about 9 or so months while in remission and chemo free, until reality hit me again too soon.
Everyone says I am soo strong for handling this crazy cancer situation as I have
Honesty, I really am not that brave... 
I just do what I have to do, to gain additional years on my ever so shortened clock!

And so I am sick AGAIN!!!
Have had the delightful intestinal virus (lower GI) with a fever over 102 for days
Been off work for a week slowly recovering my strength, trying to reintroduce food, but we are not best friends right now (not that we ever were anyway)!

I was really sick in August too
Now really sick again in October
Can't I get a break??
Body betrayal status here!

I feel I am going downhill fast... and not on a horse or in my cute VW bug... but downhill on the cancer is winning again slide...
Just not fair to just SEE my horses out my window, although they're happy just hanging out... and I think about my cute lil Bug in the driveway, just sitting there... such ironic torture I can't go out and play as I seem to be always too weak or too tired to do much of anything anymore.
Yes I know... I am very blessed to even have them in my yard to be able to see!!!
Not to worry, I am very grateful for everything in my life (minus cancer!), I'm just a little pissed off right now and little beyond frustrated!!! ggggrrrrrr

And so, I've had to postpone taking my new crazy Dex steroids as the first leg of my Deja Vu pommel myeloma back into remission treatment plan... that's ok, I wasn't looking forward to that anyway!
But I will behave, and begin the cycle in a week when my body is stronger.

Uugghhh, can't a girl get a break!
What is all this really about?
I just don't get it!!!!!!!!!!!

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

Thursday, October 10, 2013

Brief BabyBlue Bucket List Bug Blog update

Miss Baby Blue arrives a day earlier than expected!!!
Just after sunset on Sunday
all the way from sunny Florida!!

She sputters, spews smoke
sputters again, spews more smoke, stalls out
 and I'm just way tooooo excited to
even remember how to shift!
Whew! son Scott gets us home safely :)

And the next day...
Bucket List Baby Blue Bug and I 
meet and greet in the neighborhood!!!

18 and ANCIENT
all at the same time!!!

And perhaps Miss BabyBlue replica inadvertently has helped me solve the
"Why did I get Myeloma" riddle:

Driving a VW Bug as a young adult and Breathing in all those Exhaust fumes... contributed to my body's immune system mutation!!!

Do you recall the connection between Myeloma and Petroleum?
I just did...
(Google it!)
Perhaps this wasn't the best Bucket List idea after all?!

HA! Sorry Myeloma, you're not going to spoil my fun!
Miss BabyBlue is going to the "Doctor" herself for some much needed "treatments and medications" ! Here's our internal parallels:

New gas = new blood
New oil = cleansing chemo 
New parts = a stem cell transplant
Looking under the hood diagnosis = bone marrow biopsies and skeletal scans
Continued maintenance for her system = continued maintenance chemo for my system
Ahahahhaaa too funny!!!

 And speaking of FUNNY
here's Jim trying to figure out 
how to take a picture on my new phone!
Did I mention the color of the cover Scott chose for me?
You guessed it!
Baby Blue!!!

Next blog =
October blood test results and
Treatment plan decisions

SINCERE THANK YOU FOR YOUR CONTINUED INTEREST IN MY MUSINGS AND MYELOMA STATUS.  I wish this blog had the "Like" button as Facebook does, so all of you would know how much I "like", make that love, all your comments on each of my blog entries!!! Thank you so much for caring!!!

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

Friday, October 4, 2013

Biopsy results and a Bucket List Baby Blue Bug!

B is for Beware
Because this Blog is Bubbling over in silly B-Babble :)
B is also for Blood cancer Biopsy results Below

B is for a cute Bucket list Buy I spied
B is for my new 1974 Baby Blue Bug
B is for this Blast to the past Beetle I Bought in a flash

B is for this Bug Being Brought to me 
Blasting from West Palm Beach to me
B is for Bursting with nostalgic excitement

But C is for Cancer that's now suddenly Back
But this Bewitching Bug cheered and distracted me, as
Bummer Biopsy news confirmed
Boo-hoo, Blasted cancer is Back

Here's my Baby Blue Bug getting ready to leave

My new Beetle Buddies (L to R)
Ty and Randall 
Who have been so fun and helpful
with this special Bucket List Bug!

Here's she is loaded up and ready
for her trek from Florida to California
Stay safe Baby Blue
until we meet for the first time next week!

~ ~ ~ ~ ~ ~ ~ 
Ok, time to switch "gears" (sorry, couldn't help myself)
 to the main reason you came to read this blog:


Below are my medical numerical details, which summarize my blood work and biopsy stats from diagnosis Dec 2009, to my current Aug/Sept 2013 Out of Remission stats. So dang it, after all my 2010 chemo, powerful crazymaking steroids, July 2010 high dose chemo, autologous stem cell harvest and transplant, and year and half maintenance chemo, all which gave me remission!!! ... Myeloma decided to escalate and end my remission party :(

I've had 4 delightful, make that awfully painful, Bone Marrow Biopsies since late 2009, which show the level of Myeloma cancer in my blood plasma: 

Biopsy #1: Dec 2009 = 67% cancer, at shocking diagnosis
Biopsy #2: June 2010 = 10% cancer, after 6 months intensive Revlimid, Dex Steroids, Cytoxan chemo
Biopsy #3: Aug 2010 =  0% cancer, after hospitalization, high dose Melphalan chemo and auto stem cell transplant
Biopsy #4: Sept 2013 = 15% cancer, after being off maintenance Revlimid chemo for only a year :(

I am IGA Myeloma,  so one of the important Myeloma cancer markers is my Immunoglobulins: 

Normal range (measured by Kaiser/City of Hope) blood tests = 70 - 400mg/dL
Dec 2009 = 5600+mg/dL (wow! I was sure a sickie, and didn't know it!)
Aug 2010 - Oct 2012 = very low, sub normal #s as my immune systems battles back after transplant
Dec 2012 - Apr 2013 = FINALLY in the NORMAL range!!! (but sure short-lived!)
June 2013 = spiked out of normal range, but no panic yet
Aug 2013  =  spiked more, officially determined to be out of remission
Sept 2013 = edging close to 1400, which is over 3 times the high end of normal

Another important Myeloma marker is the M-protein, or M-spike via Protein Electrophoresis:

Diagnosis: Dec 2009 = 4.30gm/dL
During remission: Aug 2010 - early 2013, not detected at all!!
Official M-spike comes back: July 2013
Rising monthly: Sept 2013 = .96gm/dL

Such pretty cells for such a deadly cancer

 So what does all this mean?
1- I am not a happy cancer camper
2- I am so shocked Myeloma came back so soon
3- I am a very happy babyblue bug owner :)

4- I am very grateful to have had all the fantastic medical treatments I have had, that saved my life!!
5- I wrongly assumed I would have remission status for years and years and years and years and years and years... 
6- I am extremely grateful to still be here and have the amazing life I have, even though my energy and ability to be "me" is a fraction of what it used to be

7- I will be back in treatment, back on chemo most likely this, or next month
8- I am still partially dominating Myeloma, as fortunately my Doctors never stopped monitoring me closely, and my Out of Remission status was identified FAST!
9- Even though the cancer has come roaring back, and much quicker than we anticipated, at least it was caught this time, in a still treatable stage!

10- I am grateful for so many and so much, that is still so good in my life
11- If you love me, don't share your germs and cooties with me! No hand-shaking, no kissing; "air hugs" only please! Myeloma is a cancer of the immune system, which means... duh... I'm "immune compromised", and can get sick easily, and haven't been well since mid-August
12- Looks like I will be in treatment for life, and on some sort of chemo forever
13- Lucky (unlucky) #13... just MY luck, Myeloma is an incurable cancer...
Myeloma looks like little monsters
coming to gobble me up!! LOL

And finally, you may be wondering, what is my "sudden" interest and excitement in an old 1974 VW Beetle?
It's a fun bucket list blast to my past, as my first car was a 1972 twin of this one. I always thought it would be super groovy to find a replica of my beloved baby blue bug, and so when I found out I was fully out of remission, and the cancer was back with a vengeance... that truly was a huge wake up call to me.
That "NOW" is of the essence, and I should no longer put things off..  my previously thinking= I still had all the time in the world!! Ha! My new motto: Think it... Do it... Now! Well... I'll try to...

Next blog, I'll post a picture of me with my BabyBlue, driving to chemo treatments!! ahaha.....

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

Friday, September 20, 2013

15 Hours Fast Forward

Did you notice?
Tuesday night September 18 was a stunning full moon!

My "PonyPal" daughters Alissa and Courtney came home from college to moonlight ride with me!
Check that, Bucket List!!

Grooming fuzzy Buckskin, Black and Red-Appy spotted coats in the moonlight
Combing out knotted silky manes and tails 
Breathing in sweet horse scents, under oak tree umbrellas
Breathing in life
In the full brilliant white moon

Chatting, laughing, reminiscing, hugging, catching up
Grooming, brushing, saddling
Chatting, laughing, taking pictures...
Giggling and being goofy like a decade ago
Nostalgic memories permeating the crisp almost fall night
Pretending no worries, carefree retrospective momentary innocence

Saddle pads centered
Saddles on
Cinches cinched
Bridles and reins secured
Cowgirl up!

Silly as it sounds, we rode loops around the barn in the backyard
Circling only a small area, just like kids on pony rides
But it meant the world to me
Horses and humans in perfect sync

It was a huge full moon
Like a bright flashlight shinning down from the heavens
An incredible night beyond description
Sweet sublime memories permanently etched deep
Sealed in our psyches for safe forever keeping

And then
Just 14 hours later
We are whizzing down LA freeways
Navigating traffic craziness
Cars colliding, complicating our route
Destination: downtown Kaiser, bone marrow transplant hematology oncology
Reason: out of remission status appointment

15 hours after riding carefree, I am discussing my body's betrayal
Discussing upcoming chemo treatment options
Cancer that is back
Cancer that is coursing again through and in my blood
Cancer called Myeloma, that is trying to terminate my moonlight rides and terminate me

15 and half hours after laughing, giggling, reminiscing, grooming, and being so carefree
I am suddenly surprised with a stinging intense Bone Marrow Aspiration and Biopsy
I am in physical pain
I sob more from what it means, than what it feels like

15 and half hours from beautiful, silly, joyful merriment in the moonlight
I am being pounded and punctured in my hip bone
Expert, precise, caring, knowing surgical hands
Piercing, drilling, stinging deep into my being
Medical tools invading and drawing out my bone marrow
Soon to define and determine
Myeloma's status within me

15 hours ago I was so very very happy and falsely worry free
15 and a half hours ago I was surprised with a spontaneous 4th bone marrow biopsy
My heart and mind is racing
As soon, biopsy results will tell all

It's a full moon tonight, tomorrow, this weekend
Did you notice?
I did!

Thank you always, to those of you reading and following my crazy MM journey. I deeply appreciate your expressions of love, concern, caring and comments. Deep heartfelt gratitude :)

Next blog:
Biopsy results
Treatment options and decisions

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

Saturday, September 14, 2013

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

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
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!

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.