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

Monday, October 31, 2016

Boo on You Myeloma! Party in the Chemo Lab

Happy Halloween!

Boo on you Monster Myeloma. Stop "haunting" me with your cellular "horrors"! Today, you're not taking my fun away, when I'm all amped up on steroids! Thank goodness for crazy making steroids! Really! My life would be so much more "ghoulish"... challenging, painful, depressing and, well.. full of that "wicked" cancerous feeling, without my nemesis Dexamethasone!
Let the IV "fire burn, and the chemo cauldron bubble" in my veins. Your "blood curdling party" inside of me is done myeloma. Chemo's going to put you in a dysfunctional trance. So get "spooked" myeloma. I hope you run like a "scaredy cat", far far away from me, and that's not "witchful thinking"! No more "tricks, only treats", you hear me Great Pumpkin! Your "horror show" is done myeloma, I've put a "spell on you"... and you're gonna be "melted marshmallows" in no time! :))

Me today on steroids!

Take that myeloma! I brought the "party" to the chemo lab- Actually, I always try to bring cheer and positivity!)
Volunteer extraordinaire Karen! Huge, caring heart! She does so much for all of us! Love her!

Best Nurse ever, Josie! She's so funny, and so tolerant of my antics! All my Nurses are Amazing!
Still practicing that selfie to little avail! Look at those triple chins lol

Did you notice, I broke my "posting on the 6's theme"? Just couldn't let Halloween pass by, as so many diagnosis anniversaries are looming now. 7 years ago blood tests were revealing "weird abnormalities" and my GP was closely watching my situation and sending me to the "vampire lab" for very REGULAR blood tests. To which I thought, eh, meh, ya, whatever... Thank goodness for a VERY vigilant, caring, professional, on-it Doc!

Hope you had a day full of Treats and no Tricks!

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

Wednesday, October 26, 2016

Short and Sweet.. Learned my Dex Lesson!

Hello 10.26.16

Blah Blah, my head spins crazily. Forward march to infinity! What happened to my life?! When I reread my blogs, I can tell which were written on Roids and which were not lol. Can you? :)) Hoping you enjoy my posts, rants, musings, honest thoughts, and philosophizing about my life turned upside down by cancer. I'm sure glad I began this blog in 2010, recording 6+ years of my life, battling myeloma. Fascinating for me to go back and read my life as I felt in those posted moments. Everyone says, "Julie, write a book!". My reply: "I have... read my Living book, my blog!" This IS my Life!

Hmm, should I write a book?? Let's talk, Amazon ;)
One of my greatest challenges is planning my chemo/steroid treatments around my life. Or should I say, planning my life around my treatments.Treatment and side effects REALLY do change one's life on every level!

I'm very challenged, but I must say, that in meeting everyone I do in the chemo lab, I sure gain a deeper perspective of the huge range of all cancers out there, not to mention, connecting with my myeloma peers, and hearing the huge variance of treatment types and side effects everyone deals with. As much as I whine and complain about my situation, there's always so many struggling with much "worse" scenarios. As frustrated and pissed off I am at my circumstances, I shut my trap when I see those powering through much more intense treatments than me. I witnessed a lot of "sick" and challenged cancer comrades in the lab this past Mon and Tues. I really feel for those newly diagnosed, those on multiple chemo cocktails, or those who's bodies are seriously betraying them. Basically I can handle most "anything" but the "upper GI" drama, just sends me over the edge...

So this week became particularly challenging for me regarding the timing of my treatment schedule. Why, you ask? Well... this week is a "big deal" socially and professionally for me, as my dad's 90th birthday was Tuesday Oct 25, and on Thursday Oct 27, I will be receiving a rather "prestigious" community recognition for my contribution to Education as a college counselor. For the "well person", no big deal. Do your regular daily life, attend a function in the evening... no sweat, right? But for a challenged sickie like me, I can barely do one thing a day, let alone do chemo/steroid treatments and then wonder how I will feel, and when the evil side effects will hit!
In the past, I have skipped chemo treatments and steroids when I have "important" social, professional, personal events. But in light of my increasing M Protein and IgA numbers, I opted for being "smart" and not skipping this week's treatments. With Kyprolis and Dex steroids typically on Mondays and Tuesdays, I can normally expect to wane by mid day Wednesday, and then it's all down hill from there into mid Saturday. (See my 10.16.16 DETAILED Dex rant post!)

So what to do about Treatment!! I wrestled with options for a few weeks: 
1- Skip both Kyprolis and Dex entirely this week
2- Just do my regular 2 days of Kyprolis without Dex
3- Do just one day of Kyprolis and Dex
4- Bite it, and do my regular treatment and risk being dysfunctional on Thurs night!

Well, which option do you think I decided?
I picked option #2, and what do think happened?
Yep, the plan kinda backfired to my great surprise! I truly thought I'd be ok with just Kyprolis, NO Dex. See, my Dr and I had experimented with that option earlier in the year, when Kyprolis was pummeling myeloma. I remember feeling ok, but that was short lived, as myeloma, said "Oh yea.. Ha! just watch me now", and back up went my IgA and M Protein, and back I went on Dex. But if you've been following my blog for a while, or you know me personally, you know I tend to think too positively, and I underestimate the power of cancer and treatment chemicals, and I just muse, "I'm Julie, and everything will be "different" for me"... Ha!

So Monday comes and off I go to the chemo lab without pre-medicating with Dex. Thought I'd be just fine, but I did have my radar on, watching if I would be sabotaged. Infusion went fine, the rest of the day ok, but I wasn't very hungry and of course minimal energy, and I began to feel a bit "off" as the day marched into evening. But I carried forth, trying to be "normal", ignoring my status of a cancer patient on chemo. I ate lighter though, had some of our own chickie's eggs and spinach for dinner, tried to keep hydrated with my fave potion of pure cranberry juice mixed with sparkling water, herb tea, plain water, etc. BUT DURING THE NIGHT... OH BOY...

Hello Kyprolis, no steroids!
I had a horribly restless sleep, achy all over, felt strangely feverish, sweats in weird ways I hadn't had before, felt nauseated, awful headache, and overall feverish yucky awful, with that impending doom of OhNoI'mGettingSick!! I seriously thought I was getting a bug with a fever, or was going to get standard chemo sick. But I made it through the night, woke up feeling gross and realized my body was telling me how much I should looooove Dex steroids and never ever ever think about missing them again with chemo treatments. So yep, down the hatch I dosed not long after getting up. But I took 1/3 of the 40mg dose as I knew my "Recognition Event" was 3 days away, on my typical Thursday-crash day, and I'd certainly be skrewed if I took the full dose of 40mg on Tuesday. So I decided to take 12mg Tues, 12mg Wed and then Roid-up with the final dose of 16mg Thursday, Event Day, hoping hoping hoping to feel ok throughout Thursday evening. So this will be very interesting to see how it all works out. Haven't done 3 days in a row of steroids since 2010. And YES, I discussed this with my amazing chemo lab pharmacy Drs, and they gave me the ok, go ahead. I'm not that much of a rebel (wink, wink).

And so far, I feel ok. Not overly Roided. Just the usual fake energy pump up, and tired from little quality sleep. Very interesting experiment. So what have I learned: AS MUCH AS I LOVE TO HATE DEX STEROIDS... THEY ARE MY BEST FRIEND for treatment days and pounding myeloma cells. I didn't have a fever when I went to the chemo lab yesterday, and the achy ill feeling has subsided, thank goodness! Oh yes Dexamethasone, you are my best friend, worst enemy! You pummel myeloma and give me a false sense of ok. Then I get to HATE you on crash days. But I've learned a valuable lesson: Kyprolis loves you too :)) Trying this 3 day steroid regimen reminds me again of how I withstood 40mg, 4 days a week, back for initial treatments in 2010! I suddenly did the math on that... and wow, I took 160mg of Dexamethasone steroids per week, for about 5 months! Did I do my math correctly? 40+40+40+40 = 160 right? Wow! 160mg of roids a week! Go me!! I was so mentally gone back then and trying so hard, too hard, to be "normal". I just tried to ignore all my awful symptoms. But they were there!! OMG, they were there. And I was gifted the classic steroid bloated MOON-face too. Ugh... here's a pic from late May 2010:

Look at that MOON Face! This was just before prep for my July 2010 SCT

Confirming how I can eventually bounce back from this "bipolar life" with steroids and chemo, is my ability to "fake force" my recuperation after the lovely killer crash. Last week I felt awful late Wed, Thurs, Fri and into Sat morning... but I HAD to pull it together, as I had previously signed us humans and doggies up for the ACS cancer walk- Bark for Life- the doggie version of  the ACS Relay for Life. I named our team "Mutts for Myeloma"! I signed up, not knowing if I would make it or not, like I always do now. Sign up. Cancel. Sign up. Go. Plan. Cancel. Plan. Go. Cancel. I never know...

So here's a sample of the FUN we had. "I was ok" for the event. Tired, dehydrated, exhausted just from getting the doggies there and hanging out, but ok. So amazing how much I used to do, and now I can barely do one thing a day on "good days". As always, I can't eat or drink before events, as I never can predict my unpredictable GI system. I crashed on Sunday from all the activity, and had new rib and abdominal soreness from the big doggies pulling on their leashes, but worth it. I guess steroids do deteriorate muscles as they say, and I sure to have full body deterioration in so many ways! But I won't let Myeloma and cancer treatments steal my life any more than it already has. I push push push myself, pay for it later, but glad I do the minimal things I do... before I can't...

So next up is seeing how Dex steroids affect me later this week, after my 3 day split of 40mg. Hey, if it works out ok, I may ask my Drs and Pharmacists if I can do this regimen more often. If I feel ok tomorrow, day 3 of steroids, that would be exciting to have 3 "good days" per week, right?! Next week it's back to "regular" treatment on Mon and Tues, "pregaming" with Dex BEFORE Kyprolis! Learned that lesson well.. or maybe just a fluke?? Hoping Kyprolis and Dex continue to team up for me, and I don't become "refractory". It's nice to be able to stay on a "regular" successful treatment regimen for a while. Nice to be able to "predict" side effects, infusion schedules, medication schedules, etc. C'mon Kyprolis and Dex, get in there and pummel those tricky myeloma cells! Hoping for more "treats" than "tricks" for a long time! Happy Halloween and Fall everyone!

 Every time another holiday comes around, I am so grateful to still be here!
When I packed my decorations away in 2015, I wondered if I would be
unpacking them and decorating for 2016.
I did, so happy to do so! Hope to write the same for 2017
Happy Halloween to all that celebrate. 
Enjoy everything spicy and sweet, toasty and cozy and fun with your family!


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

Sunday, October 16, 2016

The True Story of 40mg Dex Steroids!

Hello 10.16.16

Finally…the crash fog is lifting. I can breathe again. I can feel some relief. I don’t ache as much. I can feel hope again. I’m finally (somewhat) ok in my own skin. I have “perspective” again. The frustration, anger, sadness and overwhelming sense of defeat is disappearing. It’s been 5 bi-polar crazy making days of steroid up up up and down down down.

These mysterious, cancer gobbling Dexamethasone Steroids make me feel so temporarily, momentarily wonderful, “high”, “buzzed” and “well”. There’s an amazing physiological and psychological energizing rush and boost that happens, with an amazing sense of being ok, being well, being who I used to be, being capable of “anything” again. Steroids give me pretend super powers.

Then it happens… the crash fog rolls in. The unbearable, awful, stifling, suffocating crash creeps in, engulfing my entire being, strangling me in an undefinable yuckiness. It’s not instantaneous. It creeps in rather slowly, hour by hour, dragging me further down the tunnel of misery, ripping away the surreal “helium high”. It rolls in throughout my body, permeating my being, physically, psychologically, dragging me into a pit of gloom and misery for days.

Tuesday, (6 days ago), I slammed back 40mg of Dexamethasone steroids with a Vanilla Ensure. That’s 10 little 4mg pills. They look so benign and insignificant. 10 little mint green pills that will get in my body and start telling myeloma to skedaddle the hello out of my body. 10 little miraculous pills that do so much good, yet eventually wreak havoc with me. 10 x 4 = 40. That’s “high dose” in the myeloma world. Haven’t done that since January 2010, and I don’t know how long I will be doing this level. To infinity? For 3 weeks, it’s 20mg + 20mg on Kyprolis infusion days. For one week, 40mg at one pop, on my Kyprolis off week… which used to be my “break week”. No more breaks. No more “break week”. Continuous, continual treatment… forward march to infinity. 

I take these lovely little mint green pills when I wake up. Some wake up extra early to get a jump start on the crazy-making side effects, so sleep won’t be entirely elusive later on. Me, after almost 7 years now, I’ve learned to not change my life too much to accommodate myeloma. “F you myeloma”, I say to myself as I swallow those 10 little pills. “F you cancer”. So whenever I wake up and get my day started, I take those 10 little magical monsters. As I swallow them, I know all too well what’s to come in the next several hours and days. I know the crazy bi polar extremities awaiting me. But I do what I have to do, to survive.

Several hours later I begin to feel a wonderful sense of “everything’s going to be ok”! My body doesn’t ache as much, my spirits are lifted, I’m feeling more energized, happy and hungry! I feel hope.

Several more hours later, the euphoria increases. I want to “do something”, accomplish something, get somewhere, do all the things myeloma, chemo, side effects and fatigue have prevented me from doing. I’m hungrier. Roar! I feel light and full of life. I breathe deep and almost forget I have cancer. I’m beginning to feel “alive”.

Thank you for the awesome picture Dr Dianne!
Several more hours later, I’m bouncing off the walls. Roar! Most everything is funny. Life is going to be ok. I’m going to be ok. I want to scream to the world, that I’ll be ok, Julie is coming back! Let’s party! Let’s do something. Let’s go somewhere. Help me make up for lost time! Play with me, laugh with me, fly with me, run with me, scream with me. Maybe I don’t have to take disability retirement after all I ponder.

Here I am, lower right corner lol, DexaMETH lab ;)

Several more hours later I want to eat the entire grocery store or restaurant menu. I want to do even more things: play, laugh, clean, straighten up, do chores, work, organize, drive, ride, walk, run, play, laugh, scream, write stories, tell stories, plan events, go into my office, help students, help people, save the world, eat good food and not so good food. I want to do everything. I dream of riding my horses, going on trips, hiking, riding, lake sports, skiing, running in nature, yelling to the world, “I’ll be fine!” “I’m winning”! I feel like I can accomplish anything. My power is back. Julie is back, world! Watch out, get on my bus, or get out of the way! Everyone and everything is funny, joyous, happy, accomplishable. I talk louder and don’t care. It feels great to feel so alive! 

Several more hours later I know I have to wind down to eventually sleep. But eh, who cares. I don’t want this euphoria and bliss to end. I want to accomplish, laugh, play, enjoy life while I can. I love feeling somewhat ok. It’s unbelievable to me. I want to dance, run, scream, skip, hike, do things! And I want to eat everything in sight. Sometimes I do, sometimes I control myself. Mint green ice cream matches the theme of those sweet little mint green killer steroid pills. I love having energy. I want to be me again. I temper myself and control my cravings. Mind over matter. It’s late at night. The moon is shimmering through my window. I feel so alive, I feel so me again.

I submit and give in. I drink chamomile tea. I take Melatonin or Benadryl. I try to find funny things to watch on TV, or read or just peruse online. I’m energized and positive. I’m often up late enough to hear the hoot owls hooting. The moon, the owls, the night birds. I feel so alive! I’ve learned to love the late nights, new mornings. It’s so peaceful to me. Everyone and everything is calm, resting, relaxing… while my mind is spinning out of control, in a good way. I force myself to bed, regretful that I’ll “waste” my buzz on restless sleep. 

Morning brings exhaustion, but I still feel ok. I know the crash is looming, but I’m still somewhat ok. My face is flushed and my body is buzzing and I have a headache. I hydrate a lot, or try to. I control my eating. I plan all kinds of things in my head, but I know my helium will soon be dissipating. The mental restlessness begins. I’m edgy, ready to pounce. 

24 hours after 40mg of steroids I think I can still do all kinds of things. But as the hours pass and the day moves forward, my illness reality begins to return. Whomever I’ve said I might be able to meet up with, I cancel. Whatever project I thought I could accomplish, becomes a labored chore. I push forward. I force myself to be ok. I force myself to do things around my house and property. I feel worse each hour. I'm waning and I know it. I’m frustrated and resentful.

36 hours after 40mg of steroids, my body is swelling. I have a headache. My stomach hurts a bit, but I know “food is my friend” in terms of the acid steroids create. I crave spicey and salty. I know I will regret salsa and chips, but I don’t care. I force myself to do chores around my house, around the property. I need to move, but I don’t feel like it. 

I’m waning more as the evening comes. I don’t want to talk. I’m short tempered. Everything begins to bother me. Things that were in invigorating and inspiring yesterday, are annoying today. Everyone and everything becomes annoying. I annoy myself. I question everything now. My positivity turns into negativity. I control myself physically and psychologically so I don’t become the monster I feel brewing inside of me. I bite my tongue. Optimism Julie, optimism! 

Thursday brings exhaustion, extreme fatigue. Sleep is restless, yet I’m desperate for sleep. I sleep wake up, sleep wake up, sleep wake up. I finally get up. Yuk, I feel gross. Nauseated, dehydrated, achy, headachy, swollen, grumpy, pissy, short tempered, negative, sad, depressed, frustrated, why me, how come, what happened. Nothing tastes good. Metal mouth. I force myself to eat and drink. Ugh, I hate my life. What’s the purpose I wonder? There’s no end to this endless treatment road. Why, what’s the point. Negative thoughts dominate my thinking. I stuff it. I counsel the counselor. I’m grumpy, achy, nauseated, bloated, frustrated, sad, angry, pissed off. Exhausted. Want to do so much and can’t. Illness controls me. Medications and side effects control me. Everything controls my life but me. Everything’s upside down. Not supposed to be this way. My stomach hurts, my legs hurt, my back hurts, my ribs hurt, my head hurts. Everything hurts inside and out. 

I fake everything. I try to be ok. I try to be pleasant to those around me. I stuff it. I fake it. I suppress it. I hate you myeloma and what you have done to me. I am a stranger in my own body. Not fair. Not fair. Not fair. What did I do to deserve this? 

So tired. So exhausted. Need sleep. Can’t sleep. Then I do sleep. 

It’s Friday now. I not a happy camper. I’m exhausted, sad, frustrated, angry, bewildered, achy, yucky, nauseated. I don’t like my life. I don’t like that I don’t like my life. I’m Julie the Optimist, glass always half full. What happened? I fake being ok. I don’t want to burden those around me. I always pull it together. But I’m also honest if someone asks. I also let everyone around know they’re close to getting punched if they push my buttons. I’ve never punched anyone and I never would! It just sounds good to say. I always say it with a smile. 

My family tries to cheer me up. We talk about all the things I want to do on GOOD DAYS. Ha! I don’t really have many of those any more. Myeloma stole those. Treatments stole my break week. Fatigue stole my life. I resign myself to feeling lousy 5 days a week. That’s my reality.
It’s like being engulfed in a strangling sense of undefinable gloom and doom, pain, anxiousness, physical malaise, and days of having little control over my body and how I feel. I muse how it’s so crazy how the body can go from exhilaration to funk in just a matter of hours. I give in, I know I don’t have a choice. I’m spiraling down Alice’s rabbit hole. 

Scott trying to cheer me up with a silly selfie
I’ve planned and canceled multiple things. I thought about doing so many things on my many mental lists. Too fatigued, too tired, too grumpy, too overall yucky. I apologize to everyone for everything. I apologize to friends that want to see me, but I can’t. I apologize to everyone I have to cancel on. I drag myself outside to help Jim with the animal chores. I love my animals, but chores feel like an overwhelming chore now. But seeing all my animals and knowing how they need us, lifts my spirits.
I constantly, continually tell myself how fortunate, blessed, lucky, I am. Things could be so much worse… I am always reprimanding myself for any negativity I feel, as I have so much to be grateful for. Shut your trap Julie. Suck it up Julie. You’re here. Many are not. You’ve got so many things in your favor. Be grateful. You are one of the Lucky Ones… shut up Julie, shut up stupid steroids turning me into a negative, angry, frustrated witch.

The rooster crows, the hens cackle, the horses nicker, the birdies chirp, the kitties meow, the doggies beg for petting and love. All these faces need me. They help ground me in reality. My family worries about me and feel helpless that they can’t make it all better… I am frustrated with everything and everyone. I feel so powerless. I am a yucky feeling, dysfunctional blob. My head hurts, my mind is sad, my body is achy, I feel worthless, useless and wonder why about everything. I reprimand myself. Get a grip Julie. It’s day 4 of 40mg of steroids. Haven’t done this dose since 2010, I remind myself. Shut up Julie. Back then, you did 40mg DAILY, for 4 days on, 4 days off. Just shut up Julie and be grateful for myeloma numbers half now, what they were at diagnosis 12.30.2009

Saturday… late afternoon… slowly, all of a sudden, the fog begins lifting. Slowly, then suddenly I feel a bit better. My skin isn’t crawling, my stomach doesn’t hurt as much, the acid reflux has disappeared, as is my headache. Slowly the swelling and bloated feeling is lessening. Exhaustion and extreme fatigue is lessening. The sun is shining again. Positivity is coming back. I feel hope. I feel a bit more like me. I like my life again. 

Welcome to my 40mg of Dexamethasone steroids weekly now. To infinity and beyond. Whether it’s 20mg + 20mg 2x per week on Kyprolis infusion days, 3 weeks per month, or pounding 40mg at one swallow, I do what I have to do, to not let myeloma win. 

PS- I'll find out my lab results tomorrow, 10.17.16
Let's see how this new regimen of 40mg Dex is pummeling myeloma! Check back, and I'll update my numbers here after my Dr appt and chemo infusion... and of course, cheers to roids all over again Monday and Tuesday to infinity.

UPDATE: 10.18.16
Good News- (well somewhat):
IgA down from 2110 to 2050! Only 60 points, but I'll take the downward direction!
M Protein down from 2.19 to 1.96! Only .23, but I'll take the downward direction!  
These are still pretty high numbers...

IgA is 5x the high end of normal range of 70-400 
M Protein normal/remission range is zero 
Neither level is anywhere near normal...

Thank you for reading, caring, commenting :)) xoxo

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

Thursday, October 6, 2016

On and On and On to Infinity Goes Myeloma

Hello 10.6.16

I'm not feeling great today as it's chemo/steroid crash, living in the bathroom day... and I've had this intense sharp weird left side ribcage bone pain that's really sucking the wind and life out of me. I can handle a lot, but truly, pain is so debilitating. Especially "unknown" pain. It's really awful and has gone on for days and days or over a week... It's all a blur now... I'll tell more about it below...

Not much new to report regarding my treatment success, (or not) status...
I'll update my monthly labs next week. So for my current status, please see my previous post just below with all my details and numbers :))

And how I try to be strong all the time, but
being a sickie is so exhausting and such a waste of life...

This past Mon and Tues was my last Kyprolis infusion for this current (Sept) cycle. Cycle #12, I think. 3 weeks per month, 2 days per week, of Kyprolis/Dex. (Can you even fathom being sick, and being in treatment for over 6 years? So surreal!) It will be interesting to see how the doubled dose of Dex steroids (new, stronger regimen this month forward), will affect beating back Myeloma. Thankfully, jumping from 20mg Dexamethasone to 40mg, wasn't as dramatic as I expected (side effect wise that is). Hopefully, that's a good sign?! Or am I just jaded now to just feeling sick all the time :(( This may lengthen and intensify my "crash" period, but we'll see. But most importantly, is "Double Dex" in there scaring the heck out of the Myeloma cells and debilitating their powers? Hopefully Kyprolis likes the increase too, and "2x Dex" gives Kyprolis double the power. My labs will tell the story later this month. Stay tuned :))

Get in there "good poison"
and do your thing!

Let's pummel Myeloma

As bad as I feel about my circumstances, I always get a wake up call when I'm at my chemo lab as there are many "sick looking and feeling" patients there. I truly feel so bad for them, especially for the ones new to their diagnosis and treatment regimen. If we chat, I always give encouragement, hope and promote the fight! On my "good days", I don't really look like a cancer patient on the outside, and no one really can wrap their head around how sick (and incurable) I am on the inside. Myeloma is so weird in that sense (for me and many other Myeloma patients). I feel like I always have to give "disclaimers" about my circumstances, status, appearance, etc. "Yep, been in treatment almost 7 years now!"...  "Yep, Myeloma is incurable"... "But wow Julie, you look so good"... "Your hair, wow, your hair looks so good"... "You don't look sick"... "You don't look like you have cancer"...  "You're so positive and so full of energy". "Wow, how do you do it"! Blah Blah Blah. How? How do I do what I do? I force myself to be ok. I force myself to appreciate every little thing about still being alive. I force myself to get up, fix up, get dressed in a fun theme, put make up on, style my hair... smile, laugh, smile, laugh and deal with all this shizzzzzzz. I'm friendly and outgoing naturally. I bring "the party" to the chemo lab. And for sure let everyone know that on chemo lab infusion days I AM PUMPED UP ON MEGA STEROIDS!! So that explains why I am able to function as I do. Steroids are amazing and crazy for sure. I'm sure they are wreaking havoc on my body in so many ways, but at this point in my treatment and life, I'll take the 2x Dex pump up and enjoy the ride for 2 days!

So I have this weird random sharp stabbing achy painful hurt, take your breath away feeling in my left rib cage area. Yes, I do things I shouldn't (animal chore related), but seriously, nothing extraordinary. Except about 2 weeks ago Jim and I tried moving a file cabinet into the house, and I moved, lifted tires for my VW, and did my usual horse poop raking (for daily exercise), and various other "normal", minimal, nothing extraordinary chores. Fortunately our kids always come over and help, but I didn't think I had injured myself in the process. And who knows the other things I may have done to injure myself, like basic bending, stretching, laundry, house chores, ranch chores, etc. But seriously nothing extraordinary, as I simply don't have the strength nor energy to do much of anything, ever! I push myself daily to do little things and just move around, doing slight things to "exercise", because just sitting and resting all the time isn't good either. What in the world, how in the world, why in the world am I suffering so much, so often :((

This past Sunday this intense sharp stabbing pain took my breath away. Literally, I couldn't breathe properly from the pain. I began to worry I may have really injured myself, or had a rib puncturing my lung or worse, and... super scary thought..., maybe Myeloma was really moving in, and I was developing a Plasmacytoma tumor or broken bones due to Myeloma's 7 year progression inside of me. So I went to Urgent Care and had xrays done. Fortunately the Dr did not see anything broken, but did suspect bruised ribs, soft tissue injuries, pulled muscles, pinched nerves, etc. What the heck! And it's not any better... I can't believe how awful I feel right now, with the combined chemo-steroid crash and this incredibly painful achy rib cage. Seriously life... why??!!

3 years ago today, my sweet lil "Bucket List Bug" was delivered. What a fun adventure it's been and having this lil throw back to my adolescence has brought me a lot of joy and laughs. I don't have the energy to drive her much, but just knowing I have her, makes me smile. For those new to my blog, I spontaneously bought a replica of my 1972 VW Bug, back in October 2013, when I came out of remission and started back full throttle in treatment again. I realized it was time to begin paying attention to my "Bucket List", and doing the few things I could. If you want the whole story, just look for my Sept/Oct 2013 posts on the right side menu of my blog.

Here's my lil Bucket List Bug being delivered
October 6, 2013 
3 years ago today!!

And as a little symbolic anniversary present to me, I recently bought "real" white wall tires. Honestly, back in Oct 2013, I didn't know if I'd see Oct 2016. I've learned to do what I can, when I can, and do little things that make me smile. Lesson: Make every day count (as much as possible). Live life on your terms, on days you can. Do what you can to make a difference in this life. Smile as much as you can, and process the fine line between the tragedy and comedy of life. Let stress, anger, anxiety, plans, disappointments, frustrations, etc, go. Just let it go.
It's taken me all day to post this, as the rib pain is so intense, and the chemo/steroid side effects have kept me in the bathroom on and off alllll day. Should I cry or laugh? I shake my head, cuss a bit, and laugh at the ridiculousness of my life's circumstances... 

Here's lil Bucket List Bug with her new whitewalls!
Notice the blue tint? 
That's the protective film still on, and so crazy
how it matches the paint color!

And finally, no matter how I suffer, no matter how much I have to endure, no matter how awful I feel, no matter how often I question my status and options... I am one of the lucky, blessed, fortunate ones to still be here. This past week, our Myeloma community experienced an immeasurable loss. My "blog girlfriend" Lizzy Smith lost her battle, suddenly. I was shocked to read of her passing. I don't know the details, but read she was hospitalized with pneumonia and passed suddenly. She's fought since 2012, endured so many treatments, 3 stem cell transplants, clinical trials, yet lived life to fullest with her family. Lizzy contributed so much to our online community, blogging, writing, speaking, raising awareness for so many Myeloma issues. She and Jenny Alstrom created the Myeloma Crowd, an invaluable, wonderful, amazing resource for all of us! I never actually knew Lizzy personally, but like so many of us spinning in this crazy Myeloma vortex, she was a sparkling gem and her loss leaves a permanent dent in all of us, just like Pat Killingsworth...

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.