7 Year Myeloma Diagnosis Anniversary! Goodbye 2016, Hello 2017

Hello 12.30.2016

It's my 7 year Myeloma Diagnosis Anniversary!
So many thoughts, so much to "celebrate"! Well maybe "celebrate" is the wrong adjective. How about, so much to "acknowledge", so much to reflect on, so much process! What were YOU doing 7 years ago today between 11:00 and 12:30 am, December 30, 2009?

Yes, 7 years ago today I was diagnosed with Multiple worthless Myeloma. Shock of my life then, now and forever. I still think they got my file confused with someone else.. wink wink!

Yes, 7 years worth of myeloma symptoms... actually make that 8 or 9 years worth of symptoms, as I had signs and symptoms in 2008 and 2009, but thought they were just "change of life" issues lol.

7 years worth of What the Heck, How Can This Be,You've Got the Wrong Gal, Myeloma.

7 years worth of shock, bite the bullet, take lots of meds, chemo, steroids, prep for stem cell transplant July 2010, take lots of maintenance chemo, try to move forward "normally", try to recapture my life as I knew it, then more chemo, more chemo, more chemo and here I am, 12.30.2016, many many chemos, treatments and 24/7 unrelenting side effects later.

7 years of moving forward, hoping for magic. Hoping my body is stronger than cancer. Hoping various chemo regimens keep myeloma in check, but knowing THE medical reality and MY prognosis reality. Knowing my life is balancing on a fragile cliff of possibilities and potentialities. Living every moment, knowing myeloma is incurable, and I will be in treatment forever...

As I leave 2016 behind, I am pensive and pissed. I am strong, but challenged and sad. I am hopeful that Pomalyst will begin pummeling myeloma. I am hopeful my organs can remain "healthy", while chemo kills the myeloma cells. Most of the time I have many words about my circumstances. Today I am feeling less wordy. I'm overwhelmed in so many ways. Positive and negative. Grateful and angry. Happy and sad. Mystified, incredulous, optimistic, and I know "the facts".

Goodbye 2016

Hello 2017

Hello 2017

and cheers to 7 years surviving Myeloma

Hoping I will love 2017

and myeloma hates 2017!

Thought it would be interesting and fun to take a walk down my posting memory lane, as I've reflected on this date, December 30, since I began this blog. I can see the evolution of my musings, expression of details and level of psychological disclosure from 2010 to now. I've linked my Dec 30 posts here, in case you too want to read my annual thoughts on this life changing day of my life. The details of my diagnosis will FOREVER be cemented in my psyche, but it's so interesting for me to read what came out of my fingertips each year. Not sure which post is my favorite, but many have let me know my "list" from last year's post was very meaningful to them and their lives. So here it is (below the links), in case you don't have time to peruse all my Dec 30th posts.

Reflections on a life changed by a Multiple Myeloma diagnosis, Dec 30, 2009:

Dec 30, 2010 I'm ALIVE!! One Year Ago Today I was Diagnosed

Dec 30, 2011 Diagnosis: Multiple Myeloma 12-30-2009

Dec 30, 2012 3 years ago today I was diagnosed with CANCER

Dec 30, 2013 4 years and counting..still counting...never stop counting!
 
Dec 30, 2014 5 Years ago TODAY... Boom! MM forever Changed my Life

Dec 30, 2015 6 Years Ago Today, and I'm Still Here To Talk About It! 5 x 6 = 30


And "The 2015 List" of life reflections, a life forever changed by a Myeloma diagnosis: 

Cancer changes you. Battling incurable cancer for years changes you. Being treated for cancer continually, changes you. Wears on you. Wears you down. Mentally and Physically. But you battle. You battle for all it's worth. You battle for hope. Hope that you have additional years...
Here's my 2 cents. What I know. What I learned. What I do:

Pay attention, listen to your body, Don't ignore strange symptoms, Ever!
Get regular blood tests, discuss the results, in detail
Be proactive with your health
Hydrate
Eat well, Healthy, but Fun
Lower your stress. Stress is a trigger. Stress is a killer.
Get rid of negativity and negative people
Laugh a lot, a lot, often!
Speak your mind, be real, be you, be sincere
Shut up, listen, process, analyze
Breathe deeply
Breathe very deeply often 
Hydrate
Smile often. Smile at the little things you notice
Be around people that Inspire you, Energize you, Empower you, Make you happy
Shake off negativity, delete it from your life
Delete negative things from your life
Laugh at ridiculousness
Laugh out loud a lot
Laugh just because
Cry when you need to
Don't repress your feelings
Ask a lot of questions, don't fear honest answers
Hydrate
Rid your life of that which brings you down, or complicates things unnecessarily
Less is More
Less really is More
Eat and drink the rainbow, but have ice cream and cookies and potato chips too
Don't try to be in control all the time
Trying to control things adds big stress
Balance, moderation, simplicity
Impatience becomes Patience  
Hydrate
Do for you
Do for others
Be brave, but it's ok to be scared
Fear heightens our awareness, insights and our acuity
Don't fear, fear
Make your monsters your friend
Talk, share, laugh, ask, question
Do what you love
Love what you do
Do because you can
Pay attention to your needs
Pay attention to other's needs
Set boundaries, and don't feel guilty
Big things become small things
Live life now, don't wait
Hydrate
Use your things, don't wait
Every day is special
Every day is a Bucket List day
Say yes as often as you can
But say No just as freely
Play and be playful
Do your hobbies
Love your job, your career, your goals
Book that trip, take that walk, ride what you love to ride
Breathe in nature and all this beautiful earth offers
Appreciate others always
Say please and thank you
Tip big
Smile
Smile with others, to others and while alone
Notice the little things
Process the big things
Stop and pay attention
Be aware, notice life, immerse yourself
Thank your medical team, your family, your friends, your co workers
Rescue, adopt an abandoned, abused, needy animal
Or take treats to your local animal shelter
Donate clothes, blankets, shoes to those that need them
Put a smile on someone's face as often as you can
Keep a smile on your face as often as you can
Hydrate
Take a lot of pictures
Write your story
Tell your story
Give, give however you can
Give of yourself, your time, your things, your accomplishments
Share you with them
Pay attention
Notice
Be aware
Smile
Laugh
Love
Be comfortable
Be honest
Be real
Be grateful
Say it, express it
Live Life Every Day
Hug those you love, always tell them you love them 
You Have No Guarantee of Tomorrow- Embrace Life Now!

*************

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

I'm Well!... I'm Sick... I'm Well... I'm Sick... I'm Sick of being Sick

12.26.16

Hello to my last post on the 6's. Wow! Can you believe it?! Just hit me as I typed 12.26.16! My "last" 6's post. I made it through year 6 of Myeloma and my 7 year diagnosis anniversary is just around the corner. It really hit me.. this will be the last post on my 6's theme (unless I make to 2026 lol!).

Numbers have become such a BIG deal to me since my diagnosis. For 6 years, they've determined and controlled my life. For 6 years, monthly, weekly numbers have told my internal tale of treatment success, or not. Numbers have become my enemy and my friend. Year 6 flew by, with early treatment success with Kyprolis, then suddenly, myeloma said, Oh heck No!, and I had to say goodbye to Kyprolis and hello to Pomalyst last month. C'mon Pom! Let's kick myeloma's butt for 2017!

November and December 2016 have been really challenging for me mentally and physically. I was always such a "well, healthy" person, and it's really really really difficult for me to be a sickie. I just hate feeling so depleted, so exhausted, so fatigued, so yucky, so sickly. I want to run, play, ride, laugh, engage, create, give, contribute, go, do, play, ride, ride, ride... but my reality is, I can't. Literally I cannot. My body doesn't let me. My blood levels are either so diminished and depleted, that fatigue disables me, or I am sick. Sick from myeloma's head to toe invasion, or sick with a bad headcold, or sick with pinched nerves from coughing from the bad headcold. Sick from another illness, and another one. Or "sick" on my Dex steroid "crash" days. I'm sick more than I am well. This is not me! I should be full of energy, plans, engaged in life and people and ideas. Engaged in doing, going, playing, contributing, laughing, living, seeing, giving. Whaaaaaat happened to Julie the "energizer bunny". Sadly myeloma ran my batteries out.

In the beginning, I really "convinced" myself that I would be "different". I would do some chemo, do the stem cell transplant, do some maintenance chemo, and onward life would go to infinity, and myeloma would leave me alone for a looooooooooong time, and I would have my life back. Well, that did happen, to some degree. I did have early treatment success in 2010, 2011, 2012. I was able to function as a pretty good fraction of myself (or at least pretend to, lol), then 2013 brought myeloma roaring back when we tried taking a break from (Revlimid) maintenance chemo.

So for 3 years now, 2013-2016, I have been back in active treatment, Non Stop. I'm exhausted mentally and physically. I'm worn out from the ups and downs. I'm worn out from the "what if's", the wondering when each treatment will stop being effective, the exhaustion from all the physical side effects, and the mental toll it takes living with incurable cancer.

I've always been an analytical, "Why" person, and I can't stop asking myself "Why Me"? "How come"? "What caused this"? I can't stand the "not knowing" how myeloma happened, taking over my entire being. I am teased by a couple "good days" per week while on Dex steroids, then tormented for days with lethargy, GI unrest, unbelievable physical fatigue, headaches, neuropathy, random aches and pains, blurry vision, and overall physical dysfunction. Yes, I FORCE myself to be a semblance of myself, as I HAVE to. I have too many depending on me. I am the "rock" of my family psychologically, as that's just who I am. There are animal chores that HAVE to be done. Yes there are many days I can barely function, but still function minimally to get it done. And yes, there are more and more days now where Jim and I need help, and our kids and others are needing to help us more regularly then ever...  On beautiful sunny days, those days after it rains and the earth is refreshed and cleansed, and the sun shines warm and nourishing... those are the days I am most sad and overwhelmed about my circumstances...

So I planned my weekly 40mg Dex steroid dose to coordinate with Christmas and New Year's. I've fully learned the amazing perk and pump up Dex gives me, and I take full advantage of it now. I've learned how to make Dex my "friend" before Dex becomes my nemesis. So I took Dex on Dec 23rd and 24th, knowing I would get the lovely "kick" through the 25th. Sure enough that worked, but late Christmas night, after doing way too much, and trying to be way too normal, I bit the dust. And I bit the dust all of the 26th, and thought I was getting a headcold again. I'm finishing this post on the 27th, as I finally feel a bit better now. But so fatigued. So incredibly fatigued and depleted. If you've never experienced low WBC's and low RBC's, it's difficult to put into words the physical exhaustion and depletion one feels. I could just fold up and be a slow motion blob all the time, but I can't let myself...

I pulled myself together late last week, had a few good days before and during Christmas and managed to have some family fun. Our kids "kidnapped" us on Thursday, for our annual holiday tradition at our local nursery. We've been doing this since the kids were babies, and it meant a lot to me, that I was able to go at the last minute. It meant a lot to have a few moments of pseudo normalcy, reminiscent of the past.

 

Hoping all of you had a wonderful Christmas and Hanukkah with your families and friends! I hope you were able to celebrate your lives, your blessings, and all that makes you happy and fulfilled.

I'll be back on 12.30.16, reflecting on my 7 year diagnosis anniversary!!!
Thank you for reading and following my myeloma story.

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

Myeloma! The Gift that Keeps on Giving

Hello 12.16.16

I almost wasn't going to post again, as I am so tired of myeloma in my life. So tired of myeloma consuming so much of me and my life, taking over my thoughts, my life, my physical and psychological being 24/7.  But I know I left you hanging regarding my next treatment options, so here's the quick update below. (All my current blood work stats are on my previous 12.14.16 post, if you want those surprising details.) Thanks for checking back and caring as you do!

First off, thankfully I am finally better from my lousy cold, that caused my awful incapacitating back, shoulder pain. So intense. So torturous, but easing off a bit each day. Today begins my off of Dex steroids- crash, so we'll see how bad things get without the steroids propping me up and helping with the horrible inflammation. My Dr did give me a Rx for a muscle relaxant, to use as needed.. so we'll see how this goes... ugh! Been a really challenging last few weeks, month.

Honestly, so much is a blur to me, as so much has happened in terms of me facing new (and old) realities, but essentially, my Dr suggested I move to Pomalyst 4mg (the highest dose). I (of course) then suggested moving a bit more slowly, so as to avoid the rash reaction again, suggesting we blend, alternate Pom 3mg with 4mg, like I did back in 2015 with Revlimid 10mg and 15mg. I've just felt so yucky and challenged, and I'm just so very tired of never feeling well, I just didn't want to jump to 4mg immediately. We agreed on this plan with a wink and a smile. I didn't feel Pom 3mg was given a full chance, considering all the things going on at once with me, this past month. So one more month of 3mg, but now, alternating with 4mg, and then see what story my blood tells in January.

I'll start this new regimen on Monday Dec 19 for 3 weeks, paired with the Dex 40mg per week. I've found Dex to be a bit more "friendly" when I don't superpower myself with the entire dose at one swallow. Plus I've needed to space it out recently to help with the horrible back issue, and now with Christmas and New Years coming up, I need to "properly time" my bipolar Up and Down, so I can enjoy the holidays a bit. OMG, this is all sooooooooo ridiculous. I cannot believe what I am writing and planning. It's all still so surreal, even after almost 7 years of continuous treatments.

Speaking of 7 years. 7 years ago this time, I was being seen weekly in my new shocking, unfamiliar, I can't believe I am here, office of Hematology Oncology. I just looked at my lab history and saw that on this day in 2009, they drew a lot of blood for a lot of tests (all the myeloma marker tests I know all too well now), and saw something about "draw and hold for Transfusion" ... So much was going on then, and I sure didn't understand the seriousness or the implications of what was being tested. Reality did hit, and hit hard on 12.18.2009 when I had my first and very painful, Bone Marrow Biopsy. I remember Dr Lee and Nurse Jalee being so kind and caring about the procedure, but it was SO INCREDIBLY PAINFUL, and that physical pain, slammed the psychological reality home, that "I was one sick lil puppy"... the comment I tearfully made, as I turned to the wall, while lying on the procedure bed, and began sobbing my eyes out, realizing my new reality. I knew at that moment, and that's when I fully absorbed, something big and bad was going on with me...

So anyway, so much to reflect on, so much to process, so much happening in my life, yet so little energy for anything at all. I'm sad that I wound up so sick these first few weeks of December, and the holidays are almost here, and I just don't have the helium to do much about it. Oh well, things are what they are. Life is what it is, and there are so many, far far worse off then me.

I wish all of you the very best for whichever holidays you celebrate. I wish you love, inner peace, serenity, happiness, joy, warmth, fun and a life full of that which makes you happy, so you can share joy with others. I wish you positivity and fulfillment, so that you can give back and contribute to this world. I grapple a lot with "Why Bad Things Happen to Good People" and why the world is in such chaos. I just don't understand all the challenges, heartache and heartbreak, disease and violence, etc, with humanity. Nature just seems so perfect to me, the natural world is just so beautiful and self sustaining. Yet there are just so many human battles going on everywhere on every level for everyone, I just don't get it. I just want peace and happiness... oh well...

https://www.themmrf.org/multiple-myeloma/what-is-multiple-myeloma/ 

https://www.myeloma.org/what-is-multiple-myeloma

http://www.myelomacrowd.org/

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

And... The Drama Continues...

Hello 12.14.16

Dear Friends and Followers:

If you haven't read my 12.6.16 post, please do, as that drama has continued in my life. Fortunately, the several day course of Dex Steroids gives me a break, then back (lol funny unintended pun) to the excruciating pain, that has migrated from my lower back to my mid and upper left side, back, ribs and chest. It's the take-your-breath-away type of pain. Pain like I have never experienced before. The RELIEF from Dex is undeniable and truly unbelievable!
I will be doing a "Skeletal scan" asap to check for Lytic lesions .

So why my post on December 14? Another off the "6's theme" post? :))
It's symbolic December anniversary time! 7 years, yes SEVEN years ago today I had my FIRST shocking appointment in Hematology Oncology, and I must note this pivotal moment in my life, annually. I will never forget the shock and awe of THAT DAY as if it was today...

December is my month of my life changing, mind altering, never to be the same Julie ever again, diagnosis anniversaries. Still so incredible and unbelievable to me. Each year of survival is incredible to me. All the December 2009 pre-diagnosis blood tests, conversations, my first Bone Marrow Biopsy, all the medical appointments, all the realizations, still so incredible to me. Everything still so shocking. Yes, I am very "lucky", blessed and very fortunate in so many ways, but each year has been so different, so challenging, depending on my cancer status and treatment protocol. If you'd like to read my thoughts on each previous anniversary, look to the right and click on my December posts since 2010. I think this December will be my most conflicted, melancholy, reality-check oriented of all my anniversaries...

My first Hematology Oncology appointment was with Dr Soon Ki Lee. Random assignment? I don't know. I'll never know. But how "lucky" was I to have her as my initial myeloma doctor. Tragically she passed away last year. Still unbelievable. She diagnosed me with incurable, terminal cancer and I am still here. I am about 9 years older. I am here, she is not. Beautiful human being, inside and out.

 Dr Lee, you will always be in my heart and thoughts

and always and forever a part of my life

Miss you so much. Thank you for sending me to Dr Pakanati!

Yes, there's so much  more!

So much more to report.

I had my first month on Pomalyst status check, yesterday Tues Dec 13, and thought you'd like to know how Pom and I are doing together. I did lab work Thurs Dec 8. Unfortunately it was on Pom day #18, so my blood does not reflect a full 21 day cycle of Pom. Not to mention all the Jr Tylenol, and Jr Advil meltaways I "ate like candy" to try to get some relief from the excruciating back pain... And due to the initial Pom rash reaction, I took Jr meltaway Benadryl most every dose too. And I was battling the lovely head cold that caused my horrendous back issue.
Hmmmm, wonder how these meds (and my crazy "complications") may have affected my results? I reported everything to my Dr, but we didn't discuss possible interactions, and I wasn't on top my game (because of my pain), and forgot to ask if there might be Pom interactions.

I'll let these picture stats do the talking here:

Yep, wow! Pomalyst didn't make a dent:

 As matter of fact, 

it looks like Myeloma laughed at Pomalyst

and grew stronger

 Fatigue, Fatigue, Fatigue

No helium, no immune system
Side effects, side effects, side effects galore...

Ugh, where's my "bubble"

Ok Pomalyst, get to work

Pummel those cancerous proteins messing up my life

Whoa, what's up with this one?

Never really saw this one!

Yikes! Looks like Myeloma likes Pomalyst

and isn't the least bit scared :((

Yes, my Dr and I had quite the chit chat about all these numbers, and what's going on, and what to do. Have any guesses what she suggested, and "we" decided on? Yes, you guessed it, my Dr wants me to move to the 4mg Pomalyst, and me, ugh, again fears, fears, fears, fears... Fear of harming my kidneys, liver, other organs, etc, from high doses of meds. Fears of additional side effects. Fears if I move up, but it won't work, then what? Never felt that before, but from this first month on Pom results, I have new fears I haven't had to face head on before.

But I know, I know, I have to do it to stomp myeloma. So what do you think I suggested? Yep, my head is spinning, my mind is analyzing, my whole self is scared, I'm processing this reality, and putting on my big girl boots for the "next step". 

Thank goodness for Dex Steroids propping me up, as the physical pain was doing me in, and now this reality is the not so sweet icing on my not so tasty cake. So the next plan of action Hello 7 years battling myeloma. I'm not sure I'm going to be a fan of 2017... but then again... there is a lot happening in the myeloma research and new medication options circles.

I'll end on some GOOD NEWS for you, as I'm guessing my myeloma followers are wondering if the pain might be from pneumonia? NOPE! Per my Dr, my chest and lungs are clear! It truly was "just" a lousy headcold and one WRONG position cough, that messed me up big time :(( 

Thanks for checking in and caring about my story as you do. 

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

Stop with the Challenges Myeloma! Enough is Enough!

12.6.16

And I thought I would have NOTHING "significant" to write about for this "on the "6's" post. Ha! Remember I laughed on my last post that I often muse that "not much could happen between the "6's" to post about"? WELL WAS I WRONG AGAIN! Seriously wrong! Myeloma NEVER gives me a break.

I was so challenged on 12.6.16, that originally this post was just a mini Hello and Thank You to my loyal followers for reading and checking in on the "6's". I could barely type, sit or move, to post my absurd story details, so I just gave you my headlines.

I am a bit better today, still quite challenged, but able to tell my torrid tale. No where near healed, physically or mentally, as this bug and injury (I will detail below), has really taken a huge toll on me. Disability on multiple levels is so very humbling...

Every month becomes face-first rude reality of my incurable status. I'm just so sick of being sick all the time. So sick of knowing I will be "sick" each week, no matter what, whether from the chemo meds, the myeloma side effects, the med crashes. I'm just so so burned out. Strong and brave is not my middle name this week... 7 years of challenges is really doing me in. Ok, on to the story... 

Sadly my immune system stats are not good. My WBCs, RBCs, ANC, etc, are quite below normal. My immune system is weak and fragile, and the evil head-cold cooties snuck their way in. I suspect it was my Dad on Thanksgiving, who didn't know he was incubating a sore throat, head-cold. So a week later, late Thursday night Dec 1, I woke up in the middle of the night with a raging sore throat and I just knew I was headed in the wrong direction. Friday, Saturday, Sunday was the sore throat pain, overall malaise, yucky head cold yuck. Yep, I'm a sickie... Cancel, Cancel, Cancel went all the plans..

Then Monday morning, when I woke up, I felt a tad better, as I un-dramatically got out of bed. You know the morning routine, head for the bathroom, etc. Well I felt that first morning cough coming on, so I slightly leaned on my bathroom counter, crossed my left leg over my right so I wouldn't pee in my pants lol, and I coughed, what I presumed would be an uneventful cough. Then Snap, Crackle Pop! IT HAPPENED!!

A searing, immobilizing, burning, ripping, cracking, tearing, paralyzing pain seized my lower back. Brought me to the floor. I absolutely couldn't believe what just happened! I "crawled" back to my bed, hoping I could lay flat and stretch the nerves and muscles back to where they belonged, and start my day all over again. I laid there for some time, processing what just happened, and hoped it would just go away. After about 30 minutes, I slowly, very slowly rolled to my side to get out of bed, and zing, boom, bang, the pain was so incredibly intense I really thought I had broken my spine. I HAVE NEVER EVER EVER FELT PAIN THIS INTENSE. I knew, I REALLY knew, I was messed up. Tears flowing, I got up very gingerly, tried to do my bathroom routine, but was just so immobilized by excruciating pain. Crazy, tight, pinching, aching, searing, burning, tense, you can't move- PAIN!

I'm thinking this is what my back would have looked like on a scan-

and what the angry fire I felt, burning, seizing my lower left side, would look like! 

NEVER IN MY LIFE HAVE I EVER EXPERIENCED ANYTHING LIKE THIS DISABLING IMMOBILIZING PAIN. I've fallen and been bucked off horses. Had ski injuries, bike injuries, tennis injuries, etc. I've had 2 children with long labors, with eventual C-sections, and have had other physical (sports) injuries over years, and even had quite a bit of "pulled, pinched" muscles in my back over the years. But This, This was different. This pain intensity was off the chart!

This was Monday Dec 15. The pain brought me to the floor, nothing helped, no one could help. I cried out for mercy and relief like I've never done before. My family begged me to go to ER, but I refused. I couldn't bear the thought of dealing with that process, besides I was basically crawling about my house, or immobilized on the couch, chair or bed. I was truly totally dysfunctional. I alternated Heat and Ice. I lost count of how many fast-melt Tylenols and Advils I downed. I tried to sit, I tried to lay flat, I tried to walk, I tried to crawl, I tried NOT to sneeze or cough. I tried NOT to think "this was the beginning of end". I truly wondered if this is how Myeloma patients begin down that dark, dark road of damaged broken bones. I was in a very painful, dark place, physically and mentally. My family tried to help, they begged me to get help. Truly, I was not capable of getting in a vehicle and going to ER. I said the only way I would seek medical advice would be if a Dr made a house call with an Xray machine.
I chewed more fast-melts.

And then, around 7:00pm, I had a thought: DEXAMETHASONE, my beloved, hated steroid friend is an ANTI-INFLAMMATORY! Omg, who cares if it's now night time, and I usually take Dex in the mornings. Who cares if I can't sleep, IF I CAN GET RELIEF, and send those nervy displaced nerves back to where they belong and Dex can "fix" this nightmare! Omg, Hallelujah! Helllllloooo Dex, I'm coming for you! Do your thing powerful steroids, like you've never done before! 

I was due to take my regular dose of Dex this week anyway, but I never take it at night, so that speaks to how incredibly desperate I was. With my new Pomalyst/Dex routine, I am taking 40mg of Dex per week, so I knew I could split the dose up, to get the most "mileage" of it's anti-inflammatory powers! Down the hatch went the 3 little green 4mg pills. Figured I would do 12mg (Mon night) to get those nervy nerves moving back to where they belong, then follow with 8mg Tues morning (to get back to the normal morning routine), then do another 12mg Wed morning, and the final 8mg dose of the total 40mg on Thurs morning. Creative Dex dosing math, right?!

I went to bed around 10:30pm, after doing more Ben-Gay, Heat, Ice, etc, and begging the "Universe" for relief, like I've never begged before. Well hours later, somewhere in the middle of Mon night, early Tues morning I awoke feeling the loosening of my back nerves in the middle of night! I dared not think it was actually true. I adjusted myself ever so carefully again, and went back to sleep. I was shocked when I woke up around 9:30am to some RELIEF and some MOBILITY Tuesday morning! I was so incredibly shocked at the RELIEF, I feared moving, feared doing anything. Could this be? Is this for real? Am I dreaming? I feared doing anything that might change my reality. But I slowly, carefully headed straight for the kitchen, for those "magical" next dose Dex pills, and my sudden realization that Tuesday was livable!! Shock, utter shock, flabbergasted, amazed, astonished, just cannot adequately describe my Relief and Disbelief of how quick Dexamethasone steroids got in there and UN-inflamed my disaster.

I decided to take a selfie Tuesday morning, showing how "awful" I looked after this horrendous Monday ordeal. Didn't know if I would have the "nerve" to post it (no make up indeed!), as I really am quite vain about my declining appearance. But everyone is always so kind, saying, "but wow Julie, you look so good, you don't look like you're sick or have cancer!" Well yea, I NEVER leave my house without spiffing up. But Monday's pain was so incredibly awful, I saw this horrendous pain reflected in the mirror every time I crawled to the bathroom... My family knew I was really really bad, as I looked as awful as I felt on Monday, and they told me so. That Monday selfie (to externally illustrate my extreme pain), would never happen. I couldn't take it or post it. I was suffering waay too much.

But here's me being "brave" and posting my "morning after" raw selfie, after steroids to the rescue, before I carefully took a warm, luxurious shower! Yippeee! I'm vertical! I can stand up without passing out from excruciating pain!

Hello, from Julie the cancer patient, with no patience for pain

So here it is, late Wed Dec 7. I have been walking on egg shells, SCARED TO DEATH what's coming for me next. Are the steroids just a fake prop-up? Have they only reduced the inflammation temporarily? Will my back seize again when their magical powers wane and wear off Friday, Saturday, Sunday? What kind of awful crash am I in for, from not only the Dex, but my pinched nerves? I'm scared... I have my last 8mg Dex dose Thurs morning, to complete the weekly 40mg, that I "creatively" stretched out for 4 days. I've been so cautious, so careful to walk carefully, bend carefully, cough carefully in a balanced way, AND NO MORE CROSSING MY LEGS. Who cares if I pee a bit when I sneeze or cough! Lesson too well learned this time. I'm scared for Fri, Sat, Sun...

As a result of this agonizing, excruciating experience, I have all the more painful insight about my Myeloma peers that suffer so much with Myeloma-created bone pain and damage. I cannot even imagine what you go through! I'm learning I just can't handle as much as I used to. Almost 7 years of this crazy cancer journey, has worn me down, beat me up, and weakened my once flippant, "Myeloma doesn't stand a chance with me attitude". I am feeling defeated. This has been one horribly humbling experience...  

Yet despite all this awfulness, look what suddenly bloomed and actually turned and grew towards my main window view, during this challenging ordeal. A bird or squirrel must have dropped this one seed, the stalk grew last week, and this giant, singular sunflower burst open, turning it's beautiful yellow face, completely towards my direction this week! Seriously!

It really did adjust from facing East

to facing West, towards our house!

No matter how awful I felt, this gave me hope and joy

And here I am, looking like a disproportionate goof,

just after I took the sunflower picture-

I couldn't resist capturing the spontaneous angle of the shimmery sunshine 

And finally, an exuberant, joyful buck, a spontaneous mini spook, 

taken the day after Thanksgiving, before I got sick.
They make me smile, and remind me of the life I once had,
but still fortunate to partake in, in a very limited way.

Myeloma, you humble me, scare me, anger me, sadden me, amaze me, defeat me and terrify me. But somehow I rally, I bounce back, I gain hope back, I keep perspective and I know I just can't let you win. I am so blessed and so lucky in so many ways, that no matter how down I get, no matter how defeated and scared I am, I will always have hope and always take one day at time, knowing each new day, is a new possibility, with renewed hope.

Thank you for caring and following my ridiculous myeloma adventures.

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

And the Pomalyst Drama has Begun...Hello Crazy Side Effects!

Hello 11/26/16

Each time I finish a blog post, I surprise myself how it winds up so much longer and detailed than I had ever intended or anticipated! As I click "Post", I'm sure I won't "need" to write another update on the next "6's", as I've told all there is to tell, shared all my relevant details, and certainly not much more can happen worth posting about in 10 days! Well Hello Myeloma, You Never Stop Surprising me, Challenging me, and darn it, there's Never a dull moment between posts! OMG what a ride it's been this week.

So I left off on my last post, updating you that I would be ending my Kyprolis journey and beginning a new journey with Pomalyst. What a difference 10 days makes! So much has happened between 11/16 and 11/26. Ready to hear about my crazy ride?! Here goes:

Monday November 14, I went to my "regular" Kyprolis infusion. Took my 20mg Dex roids prior to infusion as always. As you saw from my last post, my November myeloma stats were released online for me in advance, so I pretty much knew that Kyprolis had become Refractory for me, my numbers were really escalating, and no doubt Kyprolis would be getting the boot. As I mentioned in my last post, I began to feel really sentimental in the chemo lab, fully realizing how my treatment life would be dramatically changing. That place had become my "other home", my "other office", and the staff and patients- friends and comrades. There's just such a "deep connection" between all of us in the chemo lab. Suddenly, I began to wish I still had the infusion option. It also hit me that I wouldn't be as monitored on the pill form chemo, as I am on the IV type. Yet on the other hand, I began to get a bit excited thinking about the "new freedom" I would gain, not having the trek to the chemo lab 2x per week, 3 weeks per month.

Tuesday November 15, I had my monthly update appointment with my local oncologist Dr P, prior to what would normally be my 2nd (per week) Kyprolis infusion. Well... when she brought up all my stats, we both quickly acknowledged it was time for a chemo change. So it officially became official that Kyprolis is definitely not working any more, and we immediately discussed Pomalyst as my next treatment option. (Actually I think I told all this on my previous post, lol). So long story short, my Dr cancelled my Kyprolis infusions, and recommended beginning full dose of 4mg Pom. I of course, wanted to start slow and mild with 2mg Pom. Dr P was concerned this was half dose, and too low considering my high numbers, so we met in the middle at 3mg Pom, and my nurse got the ordering process going for me. Been there done that, just like Revlimid. Hello Celgene REMS program again. I left the appointment feeling sad, yet free, scared, yet curious how this new treatment would be. So many questions, so much to wonder about, so much I am not in control of. But what we do know, myeloma is currently winning...

Just look at those crazy escalating IgA numbers

And that M Protein! What the heck myeloma! 

I saw several familiar chemo comrades in the lab as I said goodbye to everyone, and more in the waiting room... we discussed our respective statuses, and said we hope to see each other soon. I was sure I would be seeing one patient in particular again, as his treatment cycle was nearing an end date, and he was due for a status scan. He was feeling great, and happy to get on with life... but I learned otherwise, just the other day.. heartbreaking story below.. Yes, expect the unexpected always, and never doubt the power of our bodies to sabotage us...

Thursday November 18 was my every 3 month appointment with Dr S, my Stem Cell Transplant oncologist. Pretty much the same conversation as with Dr P: Yep, Kyprolis is Refractory, Pomalyst is the next great choice. We'll see how my numbers go... maybe consider a "triplet" treatment if need be. Pom + ? + Dex. I haven't had to do that yet, as I have been very fortunate to respond to one chemo paired with Dex, at a time. He also mentioned all the "new" meds and options we all read about, and also potential clinical trials when the time comes. Eeekk... that's kinda scary to me... the idea that I will eventually run thru all the current meds, run out of options and have to participate in a trial to keep me alive... ssscccccaaaarrrryyyy.....

Just trying to be funny and stay positive always

On the way home from this appointment, we picked up my Pomalyst Rx at the local Fed Ex office. Deja vu Revlimid to Pomalyst. All this is just so surreal! This was Friday Nov 18, and I drove home feeling free, yet a bit anxious... wondering how me and Pom would get along. Then it hit me... OMG my birthday is Tues Nov 22, Thanksgiving is Thurs Nov 24. In between that time, we have a chance to meet up with some family friends we hadn't seen for over 20+ years! Yikes, how am I going to begin this new Pom regimen, figure out when to take my Dex, knowing, anticipating the awful debilitating crash, and wondering what new side effects may or may not hit me during all these upcoming social events. Dang you myeloma, you have totally interrupted and derailed my life! Almost 7 years into this, I still cannot fully compute all this. I still fight how myeloma has completely changed my life as I knew it, and I still dream of  "normalcy" from my body lol.

I am so very very fortunate to have the amazing insurance I do! 

Yes, one of my greatest challenges is coordinating my REAL LIFE with my treatment life. Cancer, treatments and side effects just get in the way of everything, and makes it so ridiculous to try to live life. I read so many other blogs and marvel at how much my fellow cancer patients still accomplish, and are able to get out and do. I don't consider myself a lazy lump at all, but the low blood levels fatigue is just so disabling. Relatively speaking, my life is active for a cancer patient, yet I am so very frustrated how myeloma stole my previous "normal" life from me. I am just a dysfunctional fraction of who I used to be. I marvel at the stories I read of other patients, traveling, working, meeting up with friends, family, grandkids, going on world adventures, travel adventures, sports and physical challenge events, etc. Me, I really can't even live life spontaneously any more, as I just don't know what side effect is going to hit me when or where, not to mention the extreme fatigue I experience on all non-steroid days. I just hate being out of control of my own body and hate being controlled by all these waste of time symptoms and side effects. But I push forward, and embrace the "good days" whenever I get one.

Happy beautiful birthday day to me!

So I decided to put off taking Pomalyst immediately, as we had planned a little day trip for my Bday on Saturday 11/19, then meeting up with our out of town friends on Sunday 11/20, then going out to dinner on Tues 11/22 for my actual Bday and then lastly, celebrating Thanksgiving on 11/24. Seems silly to think one event per day, every other day, is a big deal, but it really is for me. Generally I can't even handle one event per day anymore, as the fatigue is so disabling, or the surprise side effects keep me home bound. But there were just so many fun events all at once, I wasn't going to let myeloma and treatments control me. As I write this, I shake my head at how absurd all this sounds, but it truly is a real problem for me. How to coordinate when to take meds, with anticipating reactions, side effects, the awful crash, and still be able to have some semblance of life. Well I opted to put off starting the new treatment for a day or so. I have to live my life!

Happy Bday to me. I made another one!

 But this was before Pom and Dex!

Lucky me! 

Yummy! 

Perfect day! 

Lucky Lucky me! Love them!

And so... long story short, I took my first Pom pill on Saturday night, Nov 19, without Dex, as I needed to hold off on the Dex to get me past Thanksgiving, Nov 24. (Isn't this advance planning ridiculous, but I have to, as the crash is so debilitating!) I took the Pom with an aspirin and Benadryl, just like I did with the Revlimid. I woke up in the morning feeling ok, but noticed my scalp was a bit hot and itchy, but I didn't really pay that much attention to it, except when I caught myself inadvertently scratching. I noticed, but I tried not to focus on the itchiness. I remembered my intense initial treatment Revlimid rash reaction, but I dismissed any similarities.

Sunday November 20 we went downtown to meet up with our out of town friends, and that was really fun. We met in Hawaii over 20+ years ago, and have stayed in touch ever since! I almost felt "normal", thinking, wow, look how much I am doing at a time, and I'm feeling ok after one Pom dose lol. That night I took my 2nd Pom pill with aspirin and Benadryl. I remember suddenly in the middle of the night being aware how itchy my scalp felt, but I dismissed it and tried to sleep.

But... when I woke up Monday morning... OMG, there IT was... my forehead was all red, spotty, blotchy, mottled, and itching so intense on my scalp, I couldn't believe it. My head felt on fire, like an intense sunburn. I started eating Benadryl like candy, taking Claritin, and whatever Antihistamine I had. I use the Jr "melt away" version, as I get so tired swallowing pills all the time, and I learned from a Dr, that the fast dissolve type gets into your system quickest, for a more immediate affect. Towards the evening, the rash and intense itching had calmed down a bit, but I couldn't even tell you how much allergy meds I took! I decided NOT to take Pom pill #3 Sunday night.

Monday November 21, I contacted my oncologist and told her of my circumstances, and she recommended not taking the Pom for a day or two and to take the Dex asap. Well... here we go again, with the issue of trying to space out the Dex for my social events, verses taking it immediately for treatment purposes. Ugh, stupid myeloma and side effects, you just won't let me live my life. How do other patients work all this out! How do others go about "normal life", with the ups and downs of treatment side effects?!

So Tuesday November 22, my Bday, I took a 1/3 of my weekly Dex dose, knowing I needed to space it out for 3 days, to get through Thanksgiving. I was also curious if spacing out the Dex would impact the rash issue. As I've mentioned before, back for initial treatments in 2010, I took Revlimid with 40mg Dex, 4 days on, 4 days off! That's 160mg of Dex per week! Whew! Crazy, but it sure worked! Revlimid rash controlled and myeloma numbers plummeted! I do think spacing out Dex for several days works better for me, rather than slamming it down in one day. I wonder what the research is on this, or if there is research on this, and why the Rx protocol suggests the large one dose of Dex vs separating it out with treatments. Have to see what I can find online about that. But I have to make it through Tuesday, Wednesday and into Thanksgiving Thursday, so cheers to 3 days of Dex, 1/3 of 40mg, each day.

So this brings me to now, Friday 11/25 and Sat 11/26, trying to find the helium to finish this post. I am definitely crashing from the 3 day Dex blitz, all the Benadryl and probably the new and additional fatigue from the Pom. I'm dizzy, have blurry vision, swollen, exhausted, fatigued, zero energy, headachy, feel a bit of neuropathy tingling and numbness, etc, but I am HAPPY TO REPORT that I haven't had the INTENSE on fire RASH REACTION, that I did with my 2nd Pom pill. I'm still itchy, but nothing compared to what happened with Pom pill #2! We'll see what happens in the next few days, without Dex, as I wait to figure out when to Dex up again... as yes,... so many social plans upcoming, and it's not easy coordinating all of this.

Please if you are a myeloma patient on Dex and other MM meds, please tell me how you space everything out, to make it work for you medically and socially!! I'm taking taking the Pom pill at night, and even though all the Benadryl is drying me out and giving me other side effects, I think it's best to continue it, when I'm not on Dex. Fatigue city here... hope I haven't bored you with all my ranting details.

Lastly, as I mentioned above, I have a really sad story. One of my chemo lab comrades lost his battle just days after I saw him last week. So shocking and devastating to find out. We all "chance" upon each other in the waiting room and chemo lab, chit chat about our current treatments, side effects, progress and status, and share family and personal stories. We impact each other's lives in a deep, quiet way. It's an "unwanted club" we belong to, that bonds us together in a way "normal" relationships cannot. We comment on how so many of us look quite good for cancer patients in treatment. We comment that we can't ever give up. We must be strong and push forward always. We comment that we can't let cancer win. Dave was positive, optimistic, and seemed to feel quite well. I met Dave in the treatment room with his wife Jenny and sister Janet. Such a warm, sincere, delightful, loving family. Just early last week, Dave was looking forward to his status scan, to see how well his treatment was going. I was so happy that Dave seemed to be doing well, feeling ok, and was just about done with his current treatment protocol. He seemed to take everything in stride. Then, just days later, I find out his body sabotaged him. I'm shocked beyond words... I don't understand this life. My heart aches for his beautiful family that he was stolen from way too soon. Life is so unfair, and I just don't understand "why bad things happen to good people". We are friends forever Dave, Jenny and Janet. You will be forever my heart.

Dave and his sweet, funny sister Janet 

Dave and his beautiful family

************

Ok, my head hurts, I am so exhausted and fatigued, and I also feel that all too familiar itchy tingling sensation on my scalp, that I am trying hard to ignore. Cross your fingers I can tolerate Pomalyst, and I'm not too allergic to it. Why, life, why?
Thank you for reading and caring about my story!

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