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: http://www.onclive.com/publications/obtn/2013/October-2013/New-Approaches-Explored-in-Relapsed-Refractory-Multiple-Myeloma#sthash.LaE30QSj.dpuf

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!
 

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.

So....
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?

Velcade?

IV?

Subcutaneous?

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!
 

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!