Potato Chips, Dark Chocolate, Spinach and future Rebellion!

Beware... Today is DEX STEROID day... aka ROID RAGE day so this post "rages" on and on and on... lol!

As I down more pills and meds today than I have fingers, I can't help thinking... and thinking and thinking (as I always do) ... WHY do I have incurable cancer? WHAT did I do to cause this? WHY me? I want the remainder of my life to be long, fun, fulfilling and silly! I'm too young to be thinking about how much time I have left, when I'm going to get all my rides in, and when my demise will actually arrive...

Over and over I have pondered the impact of stress and stressors. I do believe stress has a HUGE impact on our Bio-Physiology... changing, damaging, altering our inner chemistry and genetic profile, creating a ripe host for cellular mutations, aka stupid cancer. Most everyone I know who has been diagnosed with cancer (minus very young children), SIGNIFICANT stress has been a factor in their lives. (Those that know me well, know "the stressor" that stressed me out most of my life! But that's for an entirely different blog topic haha!)
  
And perhaps there IS an immune system connection with my life long hypothyroidism, allergies (food and environmental) and a short bout with asthma, and that crazy benign neuroma tumor (located in my lower neck/clavicle area) I had removed back in 1998? I'll have to look for research and studies related to those. Thanks though to extensive and continuing chemo, my 2010 ASCT, allergies are mostly completely non-existent, and haven't had any asthma since our cute pet rats passed on 15+ years ago. Yeah for chemo! Guess me and chemicals do get along well!!!

So what really is this blog musing about lol... reflecting on some pretty funny conversations the other day with my hilarious, rebellious colleagues. These blunt, boisterous conversations (so raw and authentic) are so amusing and thought-provoking to me, causing me to reflect on my lifelong personality perspective of: "Of course I will be SomeOne"! I've always been goal oriented, studious, career focused, super family devoted, and always wanting a "drama-free" zone around me! (Although there many that would take exception to this, as I am not one to keep my opinions to my self!)

I laugh at and with my colleagues (and you know who you are!), who so straight out, unabashedly share how you previously and currently live your life, so much more on the wild side then me! I reflect on my relentless quest for perfection, albeit, imperfect as perfection is. I contemplate my life's journey of personal achievement, to career success- which thank you very much Myeloma- for promptly reducing me to minimalist functionality, where I'm now just a mere fraction of a fraction, of my former self! F you Myeloma!

I laugh with them, at their spontaneous "WTF" life's philosophy, emphasizing and sprinkling their points with expletives! I'm humored at their wild and raucous experiences that I never had... I was always so dang cautious, conscientious, and consequence oriented. No booze, No drugs, No smoking, No wild partying, etc. Responsibility my middle name ! "What the F Jules!", she said. So I tossed caution aside (whoo-hoo!) and had a bag of potato chips and chocolate with them, and suffered later lol.

Make no mistake Myeloma, I've had a wonderful life, full of joy, laughs, success and irreplaceable events and memories! Thanks to my caring parents, amazing husband, fantastic kids, extended family and great friends and colleagues, there is not too much I would change... No I'm not without flaws, and yes I've done some dumb things, but tame and sane overall. But what if I had lived a bit more recklessly??? Would that have changed my "predisposition" to Myeloma? What's up with all the drunks, druggies, chain smokers, fast food junkies that live long lives, behaving badly? F u Myeloma... where'd my clean living get me? (ok, I have outlived my "high risk" stats, due in part to what little "good health" I had at diagnosis)

As our kids were growing up- Respect, Rules, Boundaries, being Mentally and Physically smart and making the "right" choice, was the core and foundation of our lives. As they moved into adulthood, college years, early 20's and beyond, our daily mantra was "Action... and Consequences", "look deeply before you leap", "never forget the potential outcome of your choices"!!! Well they're amazing adults now, and we have few regrets about our parenting (except we were too good, too nice lol). As they got older, we relaxed a bit, and laughed: "if you wind up in jail... make us your first phone call, but don't count on us to bail your A$$ out!" Harsh words we never had to test out!! We all ponder now what, if anything, they would do differently, and they too, think about being just a bit more "badly behaved" (especially Scott the cancer survivor). Alissa hasn't stopped playing yet! I was always so entertained when their friends would share their wild experiences with me: me thinking, wow, how stupid of you... but oh so fun your adventures are!!! Think Havasu... and you know the stories!

So this brings me to being a tad pissed off for most always doing the right thing and still being diagnosed with deadly incurable Myeloma !
I basically lived and ate really healthy
Tried to get a section of the entire food pyramid in, almost every other day
Always trying to be a "healthy anorexic" (eating well and watching my weight) 
I didn't drink alcohol, ever do drugs, or smoke
I drank herb tea, half-caff coffee, watered down juices, and never soda
Few fatty foods and of course, no fast food/junk food, very little animal products
Earlier on I didn't drink a ton of water though... maybe that's it!!! 
Perhaps it was my busy, busy, busy life with never enough sleep, committing to too much, being the ever present, "mom-counselor" to all...
Perhaps my "mid-life" braces, all those dental xrays, and not really eating right for those years, contributed to hosting myeloma?... as I found it challenging to eat with a mouthfull of irregular, sharp metal clanking together. To be honest, looking back at the years preceding my diagnosis, I really didn't eat as well as I imagined I did... dumb me! - why didn't I know of Ensure and nutritional drinks then!!!
Perhaps it was also the years of stress (good stress, bad stress, all kinds of keep it together stress), but lots of stress none the less, that eventually flicked the cancer switch?

Who the heck knows! ... I'll never know why Myeloma chose me, or why I created a body chemistry that invited Myeloma in, and gave Myeloma the welcome mat into my life
Perhaps I should have indulged more, not tried to be "so good" all the time
Perhaps I should have cared less about all the things I cared so much about
Perhaps my quest for the best, should have been more of the "less is more" philosophy I so often espoused

Oh well....
Cheers to a banana, cream of broccoli soup, sauteed fresh spinach for lunch today... and like a good girl, I took my morning and evening meds with a "delicious" vanilla Ensure.
I made us Breakfast for Dinner tonight, after I did 6500+ steps (thank you FitBit) around the barn to burn off some Roid Rage Energy. I made Jim a Hawaiian special: Spam and scrambled eggs, sauteed with spinach and hot sauce. Me, a tamer version minus the Spam, but with added spinach, avocado, and yes... hot sauce! Dex steroids make me (temporarily) "crave" spicy!

I splurged on dark chocolate today, petted my horses and scooped some poop. I breathed in deeply, including dusty manure residue, and inhaled sweet horse breath kisses. Take that stupid Myeloma!

So what's my point...
I think I'll take a few "wild detours" on my "next journey", and cuss a bit more too! And wear cowgirl boots more often! And take more rides on the "no stress express"!

PS- Revlimid 10mg is going well. No allergic reax so far. Tired, achy, etc, but okie dokie... blood tests and monthly oncology appointment next week. Not sure what I was worried about lol! Bring on the 15mg if necessary.
See you in May my loyal listeners, lurkers, and followers  :)

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

Climbing the Revlimid ladder: Hello 10mg and Beyond

Ok, Ok, I surrender! I accept I don't have magical Myeloma "curative" powers. I accept cancer is stronger than me, and I have to step up my battle. Silly me, I really thought I could just low dose pummel Myeloma back into Remission submission with minimal chemo dosages. HA! I'm mortal after all.

Inspiration from my sweet, talented friend Kathy!

Thursday I met with my City of Hope SCT oncologist Dr Spielberger (who is Director of the BMT/SCT Department). We agreed to step up Rev from 5mg to 10m to 15mg... onwards and upwards if necessary. He's thinking my system is different now, and I won't have the crazy allergic reax I did in 2010. Ok, I'm feeling brave. Be scared dysfunctional Myeloma contaminated plasma cells, here comes more Rev!!

Ten it is!
Ten after the 10th of April
Ten is Tenable!
Ten is no longer Tentative!

Then today, I met with my wonderful primary hematologist-oncologist Dr Lee, and she agrees with the plan. She fully understands my "go slow" perspective, and agrees with moving on to 10mg, then seeing how my numbers are (as I have monthly blood tests and monthly meetings with her).
We talked about how well I did with 10mg in 2010. How 10mg brought me from 67% cancerous Myeloma status, down to 10% cancer, prior to my Autologous Stem Cell Transplant, which then brought me to full Remission (CR) status August 2010. Ha! that's a lot of Ten's! (10mg in 2010 which = 10%)! Ten must be my magic number, right?!
I've been VERY lucky to never have had any "bone involvement", and all my skeletal scans have been NORMAL. Not to mention, my current CBC's don't look too bad either. I'm still sub-normal on Whites, but most of my CBC's are at the low end of Normal. Shocking after being such a sickie for Feb and March! Guess all the Gerber baby food Jim buys for me is keeping me healthy :)

Here's my Immunoglobulin status as of April blood tests:
IgG = 309 (normal range = 700 -1600)
IgA = 1390 (normal range = 70 - 400) I was 5700+ + at diagnosis!
IgM = 16 (normal range = 40 - 230)

M-Protein, Serum = .99 (Remission = Zero: 0.0)

More inspiration from creative and talented Kathy!

Ok Revlimid, let your 10mg Tenacious Tentacles tackle Myeloma into oblivion! I am no longer Tentative about moving to Ten mg :) Big deal right? And embarrassing, as most of you Myeloma warriors out there started on 25mg, and here I've been whining about moving beyond 5mg. Yeah, I'm a medication whimp!

Goodbye 5mg Rev! Just took my last pill of you with "Tenacious" Purple Cowboy:

Seriously great red wine (right Kerry and Henry!)

I'm just teasing!! water, herb tea and chemo for me.

So get to work Rev 10 and Dex!!! Get 'er done my ol stand-by Revlimid, so I don't have to try Velcade, Kyprolis, Pomalyst, Doxil, etc, and worry about new side effects... sorry, I'm a scaredy-cat and HATE feeling sick!!!

Hoping 10mg gets me well enough to continue my counseling Tenure, and I make it to our new offices Dec 2014 or Jan 2015?

 Thanks Connie for taking this great picture of me being silly!

I think I've Tendered enough 10 references forever, right?! 

Thank you so very much for following, reading, commenting on and tolerating my goofy posts.  Your visible and invisible support cheers me on!

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

My March Myeloma Madness

Hi Everyone!
First of all, thank you to my followers for your detailed replies and suggestions on my previous post! I truly, very much appreciate your comments and insights!!! Thank you to all my invisible followers too! I appreciate you checking in and reading my musings.

I'll (try) to make this short(er) than usual, as I will have more of an update after my 2nd oncology appointment next Friday.

 Here's me and sweet Abbie over a year ago. Just loooove her!!!

She's a death row rescue from the mean streets of LA

To be honest, I have been too optimistic (perhaps naive), trying to see my situation as better than it actually is... hence MY stubborn stupidity at remaining on low dose chemo. So after my oncology consult this past Thursday with my City of Hope SCT Doc, who very nicely (but seriously) let me know that the low dose Revlimid I am on needs to change NOW, if I am to make an impact on the increasing levels of cancer within me. Ok I get it. Myeloma is winning right now.

Dr Spielberger (who is Director of the Kaiser-City of Hope Hospital Bone Marrow/Stem Cell Transplant Department), clearly let me know that I should be doubling(2x), tripling(3x), quadrupling(4x), quintupling(5x) the level of Revlimid I am on. And if Rev and Dex stops working for me, we'll move on to all the other Myeloma mashers!

I laughed when he wanted me to jump from 5mg to 25mg ! ahahaha Doc... kill me fast! I reminded him of my death defying allergic reax in 2010 when we went from 10mg to 15mg. I quickly developed a lovely blotchy, patchy, raised rash moving rapidly over my body. I looked like my Appaloosa horse RedBear! I had to eat Benedryl like candy and we immediately stopped the 15 and went back to 10, and stayed there for the remainder of my initial 2010 treatment. Doc said ok, ok, we'll start slower... how about trying 15 next RX?? Hello.. NO, I said... let's be gradual here and go from 5 to 10 and then see if I can tolerate 15. He's very amused by me, in a good way :)

Why this now, after a few months of (minimal) success? My Myeloma contaminated IgA immunoglobulins haven't stopped rising (4x the high end of normal), and my M-spike is spiking more. And you know what??? I secretly knew. How? I've been a sickie most all of March. (I have to always remind myself and others: MYELOMA IS A COMPROMISED IMMUNE SYSTEM CANCER! So no wonder I am always sick! duh Julie!)
I only went in to my office a few days this month, and the times I did, I shouldn't have. Last week, the one day I went in, I was so dizzy and tingly (from hardly eating for a week), I thought I would pass out!!! I told my sweet mom/daughter student appointment that I felt faint, just in case I did a face plant on my desk!

First I had a crazy sinus fever thing for over a week to 2 weeks, then a week-ish later, I developed lower GI volcanic issues... where, (sparing you the gross details), my bathroom became my permanent residence and office. I thought, this will pass, probably related to medication overload. So I contacted my local oncologist and we reduced the levels of Mepron and Acyclovir (even though she didn't think that was the cause, but wanted to see if my GI would calm down). Well it didn't, except on Dex steroid days. I even tried going out to dinner with friends, and again, sparing you the details... had to leave the restaurant FAST, ditching them and Jim, racing home and "praying" I wouldn't ruin Jim's car ... BARELY making it to the bathroom... ugh... that was sooooo awful!!! I've lost 5 pounds this month, but that's ok. What mid-life girl doesn't want to lose a few pounds? Well, not this way, thank you very much stupid Myeloma challenged immune system!

And so, realities are (finally) setting in:
I have cancer
I'm a sickie
I feel lousy more than I feel good
I can't do much of anything, as I have to stay close to my bestfriend "John"
Cancer is winning
Myeloma is stronger than me
My internal Army, Navy, Marines, Air Force, needs better "ammunition" asap!
My immune system continues to fail me
I have felt yucky most all of March
And this... is my "March Madness"

But I will battle forward and increase my friend Revlimid
I will eat Benedryl like candy if I have to (I like that it's hot pink!)
I will TRY to accept that I have cancer, and I am not the Julie I used to be
And I will savor the good days, and be pissed at the bad days, but I will never give in Myeloma!
You hear that Myeloma...  I'm not giving in or up. I'll fight until I can't !!!

Last Sunday "selfie" when Dex steroids temporarily helped me feel better

for a day or so... then right back to GI drama.

Hello Dex again today, please let me eat and pretend to be normal!!!

Simple explanation of IgA immunoglobulins. Funny how certain article realities finally sink in!

LOL- not so short post after-all!!!
Thanks for reading and caring, and I will update on my medication plan in a week or so.

Thank you followers!!!

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

March-ing Forward update

Well hello everyone!
I just realized how long it's been since I've updated my blog! My sincerest apologies to those that check in regularly and worried about me. Thank you for caring as you do!

   This is one of my all time fave pics of me and RedBear!

 
Taken by my amazingly skilled and creative photographer friend Kathy B

So this month's lab results revealed nothing much new from last month's results. I've kinda "flatlined" at the current levels of Revlimid (5mg) and DexSteroids (20mg) I am on. My IgA went up about 60 points (not huge, but not good) and my M-protein/M-spike went down only .07 points (tiny, but good). This is all quite negligible though. Bottom line... if I want to be more aggressive with bringing my myeloma numbers down, and rid my body of cancer, I will have to double up on my dosage levels pretty soon. At this time, my oncologists are leaving this decision up to me.

Each appointment, we discuss whether I should/could be a candidate for a second autologous stem cell transplant. At this time, both my oncologists feel the outcome would NOT justify the risk of putting me through that again. In other words, they don't think I will reach remission again, and there's really no point subjecting me to the intensity (and potential dangers) of another ASCT.

I will meet with my City of Hope (transplant) oncologist towards the end of the month, and we'll see what he says about all this.

So given the circumstances... what would you do???
Should I just mosey along at the levels I'm at since they don't bother me too much (except dealing with fatigue, intestinal issues every other day, neuropathy, being immune compromised, etc)? Remaining at these lower levels is definitely not quickly obliterating myeloma cells from my body. But raising the chemo levels to do so, will definitely impact my already impacted "quality of life" (and that does concern me).
To some this may not sound like a big deal to double my chemo levels, but I had a severe (life threatening) allergic reaction to higher doses of Revlimid back in 2010, during my initial treatments. I'm not looking forward to the "unknown" future chemo side-effects coming my way.

Currently, I am still able to work a bit (which I still have much passion for!), and I continue to be able to do a fair amount of the things I always did: (hanging with my horses, doggies, kitties, driving my ol Beetle when it's drivable lol, occasional day-trips with friends, and of course enjoying life with my amazing fambam!)  Although my energy level is greatly reduced, and to be honest, I really only feel good a few days a week... but I get by, and practice one of my fave mottos:
"Fake it, til you make it" !

Birdie cracks me up and always makes us smile!

My oncologists reassure me at each appointment, that there are several new generation myeloma treatments since my 12/2009 diagnosis. They are confident that if the Rev/Dex combo loses its effectiveness with me, they have other options in the treatment pipeline for me. (And I read voraciously online, so I know what's happening regarding the latest treatment options.) Yay!!! for all the brilliant medical researchers, chemists, oncology teams, pharmacy companies, etc, extending us "Myelomers", lives!!! Thank you!!!

So all this always make me think... what should I be doing with my life?
Status Quo? Stay the course, stay the same, maintain my current "new normal"? Remain in familiar (safe) territory on this low dose "comfort zone"? But unfortunately, this allows Myeloma to continue to multiply within me.

Or is it time to "radically" change my life, and do now what I may not be able to do in the coming months/years... (in other words, get on with the "bucket list", re-do Hawaii, etc!) ... and then get on with increasing/changing chemo levels and types?

I know many feel uncomfortable when I address the "terminal", "incurable" aspect of Myeloma... but to me... it sure would be helpful to have an idea if I am living in ignorance right now regarding my (perceived) longevity timeline. If I could "know" how much or how little time I have left, or how much "usable", feeling-ok time I have left, that might just influence me to make some changes in my current lifestyle, as I naively feel I have tons of time left that I "know" I actually really don't ...

Did I ever mention that I treated myself to this new tackroom

as my Remission celebration in 2011. Represents so much to me

and one of my all time fave views!

Time to eat some ice cream, or actually brownies sound good, (and not care about fat and calories!) It's going to be beautiful this weekend and me and Dex are headed for our love/hate roller-coaster ride for the next several days!

So tell me, what would you do...

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

Low Dose Treatment Reality Check

Dear Myeloma, 

You're trying to win, but I'm going to outsmart you!

You're trying to ruin my life, but I'm not going to let you. 

It's still hard to accept you are real in my life, even with everything I have gone through. 

Talking about you MYELOMA, saying the word CANCER, still is surreal. When people ask about me, I talk about you and how you affect me very matter-of-factly, like I am reporting about someone else. It's all still just an out of body experience... even 4 years later. I'm still trying to be Julie before diagnosis.

 

And so when you returned Myeloma, after I scored REMISSION over you, I still thought you were not for real in my life. I still thought one of my Oncologists would one day say, "we are so very sorry Julie, we misdiagnosed you! You are just fine! We apologize for mixing up your medical records with another Julie.

When you returned last year Myeloma, boldly invading my immune system and trying to dominate my fragile physiology, I really thought this minimal medication regimen would again stomp you into oblivion. I keep naively thinking I'm different; that the normal rules don't apply to me.. ha!

Well you have humbled me again Myeloma

You have shown me how tenacious you are 

You have shown me that I need to step up my battle and pummel you with greater chemical intensity

But don't forget Myeloma, I will not let you win!

Yesterday, at my monthly oncology appointment, I found out good news and bad news. I found out that my current diet of medications is having a bit of an impact on you Myeloma:

I found out that my IgA Immunoglobulins have basically stayed the same since last month, decreasing only a tiny bit 

I found out that my M-Protien, M-Spike has increased a tiny bit.

Emphasis on tiny bit for both...

So Myeloma, I found out that it's time step up the battle against you! That the current "low dose" levels of Revlimid and Dex will need to be increased, if I am to send you packing again Myeloma. I must accept that you exist in my body, and you're trying to kill me. I can't pretend you don't, and that you'll just magically disappear. 

Watch out Myeloma, I'm bringing on the higher dose arsenal to have a more powerful impact on beating you!

At this appointment, I asked my oncologist if we could go one more month (February) at the 5mg level of Revlimid. She understands the issue of "quality of life". She remembers my severe allergic reaction to higher levels of Rev (15mg). She also mentioned there are several more Myeloma treatment options now. She is very kind to me, and very reassuring. I read a lot online, so I know I have other chemo options. I know I will have to step it up. I know this is a forever battle. I don't like it, but I know it. And honestly friends, I'm just a bit scared of where all this going... but don't tell Myeloma I said that!

It was a beautiful day yesterday after my appointment. 

I (try) to embrace life fully, everyday. 

I will not let Myeloma limit me. 

 And so, I went for a little soak up life nature walk with my dear friend Kathy and our little doggies Hanna and Portia (who met many friends along the way)

I breathed in life, and stopped thinking about you Myeloma. 

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

New year, not so new meds, and the old plan is ok with me!

Happy New Year Blog Followers!
Hoping your 2014 is off to a wonderful start for you and yours, and great things come your way this year!

Funny how old aspects and milestones of my cancer life randomly hit me. As I just wrote 2014, it suddenly sunk in that I have had the formal diagnosis of cancer for 4 years now! Who knows how long it was brewing within me prior to diagnosis..., making the 4 years into 5, 6, 7, double? triple? years ... I'll never know the what, when, why, how and actual trigger of Myeloma... but that's ok. I have accepted that I have an incurable, terminal cancer, or in softer words, a "chronic illness". Some are bothered when I refer to my situation as terminal, and they quickly say, "well you know Julie... everyone is terminal"... ok... whatever makes them feel better... I live with my reality. 

Seriously though, I am so grateful I am still here. Every morning I wake up, I really do take a second breath of realization, that I AM HERE... that I woke up to embrace another day!
I feel fortunate for the "quality of life" I do still have considering the circumstances and what I could be feeling and enduring.
When people ask how I am, I generally reply "ok". Not bad for someone in my situation. I'm here (wherever that here/there might be), I am vertical, I am functional, I am able to engage in life/work in small doses, and I am tolerating my new chemo regimen, and most importantly, I am not hugging a toilet !!! Truly, I feel so grateful for the little things in my world, I am still able to embrace daily. 

And I will always feel so blessed for the medical insurance I've had, that continues to provide me with what I know to be, excellent medical care and a wonderful team of caring Doctors and Nurses. Lucky me!!!

And so on to my current 2014 treatment plan and stats:
Check out my blog entry from November 18, 2013 for a pictorial of my medications.

I am liking only doing 20mg of Dexamethasone steroids only ONE day a week. So tolerable compared to my 2010 initial regimen of 40mg 4 days on, 4 day off!!
The current low dose 5mg Revlimid is also quite tolerable, although fatiguing and tiring, and bit of neuropathy is back.
Thankfully, both meds have put a detectable U-turn in Myeloma's forward march!
My immune system remains challenged... so please stay away from me if you are a sickie, or around anyone that's is or has been sick!!!
The combination of all the meds do make me feel like someone has punched me in the stomach some days, but again, I feel so fortunate that I tolerate the meds as I do. As a matter of fact, I need to go take them now... be right back...

My most recent status in number:
IgA = 1890 for December
January's blood tests show IgA = 1240
Still high, but I'll take the downward slide!
(Normal range is 70-400)
Goooooooo Revlimid and Dex! Stomp and chomp those Myeloma cells!!

M-Protein was 1.40 in December, and January's blood tests show .84
This measurement detects the existence of Myeloma in my blood plasma
(Remission = 0)
But I'll take this, thank you chemo and steroids!

So in summary, we are not being super aggressive with the meds, as I value my quality of life and don't want to feel horrible from high dose meds. But the low dose I am on, is WORKING!!!

I always visualize the chemo and steroids in my system gobbling up the cancer cells like "Pac-man" ! And I just stumbled on this timely and so relevant element of the game:
I quote from Wikipedia: "Pac-Man was designed to have no ending – as long as the player keeps at least one life, he or she should be able to play the game indefinitely."
Well that sure sums it all up for me... keep one life... play indefinitely, no ending!!! wow!! never knew!!! Take that Myeloma!!!

My Kaiser-City of Hope oncologist did discuss the pros and cons of a second (autologous) stem cell transplant, but we're going with the chemo meds first. Just something he wants me to think about, as they weigh the pros and cons of putting me through that again, noting that the outcome may not be worth the risk... Besides, there are several new next generation Myeloma targeted chemos that I haven't had the pleasure of ingesting or injecting yet... so I am comfortable knowing I have several Myeloma devouring options in my arsenal!

Happy New Year to all of you! I am so grateful for your friendship and support!

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

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
Cancer
Cancer
Multiple Myeloma (my new vocabulary word!)
Cancer
Blood Cancer (no way... not me... I'm healthy, I've lived healthy, I did all the right things!)
Cancer
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
Cancer
Multiple Myeloma
Blood Cancer
Sick... need treatment now
Chemotherapy
Pills
IV
Stem Cell Transplant
Hospitalization
Cancer
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!

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!

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!