Decisions, Decisions... Treatment Changes Scare Me!

Friday 1.13.17

Yep, it's Friday the 13th... perfect day to already break my "on the 7's" theme posting, as I have news, labs, numbers, results and big decisions to make as a result of my oncology appointment yesterday 1.12.17

Yesterday, Thursday January 12, 2017 was really my Friday the 13th! It was pouring rain here in CA, when I left for my afternoon Oncology appointment. Driving in the rain doesn't bother me a bit, I rather enjoy it. It's all the other crazies out there! That scares me. I'm cautious and smart, and drive an older model SUV, so I feel quite safe... UNTIL MY DRIVER'S SIDE WINDSHIELD-WIPER DECIDED TO BREAK, SNAP BACKWARDS INTO THE GLASS WINDSHIELD, HITTING METAL ON GLASS, FLOPPING AROUND, AS THE RAIN POURED CATS, DOGS AND HUGE RAIN DROPS! Scared me so much! The wiper whipped around, metal hitting the glass windshield, until I got my senses about me to turn the wipers off! I was driving over an overpass and couldn't pull over, and by the time I could, traffic was moving so fast and recklessly, I didn't want to take the chance pulling over, and not being able to pull back into traffic. Besides, what the heck would I do anyway. The wiper was broken, backwards, metal on glass, pouring rain, and I had an oncology appointment to get to. So I continued to drive in the blinding rain, without wipers. Scared the shizzz out of me, but I stayed in the slow lane, shaking my head, and thinking, what the heck life... what the heck are you doing to me! I'm done with challenges, tests and "excitement". SERIOUSLY DONE! And this was before my appointment and the unsettling news to come...

This could have been my windshield, 

had I not turned the wipers off when I did!

So I made it to my appointment alive, and my Dr brings up my labs with a worried look, and let's me know she is very concerned with the upward climb of my numbers. Bottom line: Myeloma is winning over Pomalyst. Pom is barely making a cellular dent... Time to change the treatment plan AGAIN. Ugh!! Nooooooo!!! C'mon Pom, please work! We got off to a rocky start in Nov and Dec with all my crazy allergies, head cold illness and crazy pinched nerves back issue. Maybe one more month will make a difference I plead. I am less and less brave about this cancer thing every year, every change in treatment. I am so fearful of new and awful side effects. I've got the crash cycle down, know fatigue all too well, GI stuff in "control", neuropathy not too bad, etc... I'm just starting to be friends with Pom... perhaps that's the problem: If chemo DOESN'T cause dramatic side effects, maybe it's not working?... see Pom and Dex steroids are giving me the opposite problem Revlimid did... going from unpredictable volcanic diarrhea with Rev, to both diarrhea and being corked up with Kyprolis, and now Pom and Dex fully cork me up. Maybe it's all the myeloma cells corking me up? LOL, sorry to the non-patients reading this. Us cancer patients talk about our GI issues and body side effects like "normal" people talk about their social plans!  

My Dr wants to stop Pom and start Darzalex and Velcade, along with good ol Dex steroids. As in start next week! Darzalex SCARES ME! I have read a lot about it, from Research sites to Pharma sites to Patient sites. The initial infusion of Darzalex SCARES me! Google it, read patient blogs and infusion insanity! (Besides, isn't it targeted to IgG myeloma, and I'm IgA?) Remember I skipped right past Velcade for Kyprolis, Nov 2015, because of all the reports of terrible Neuropathy with Velcade. Ugh! I hate myeloma, and hate that I am controlled by myeloma and what it is doing to me and that I have to take meds or die!

So after discussing my labs, and various options for treatment and meds, I gave in, and said "yes, ok Dr, you're the expert, you know best, I will try this new regimen..."  I drove home teary, sad, mad, frustrated, and incredulous, that this is what my "life" has come to. I'm tired and worn down from 7 years of this battle. I want to feel good. I want to play. I want to be "normal". I want to make "superficial" plans like everyone else. I want to work, play, go places, other than appointments related to myeloma. I just want to live an uncomplicated life... 

Fortunately, it wasn't raining much driving home. Just misty, so I did ok without functional windshield wipers. Broken wipers. So symbolic. Rain streaking across my windshield. Tears slipping from my eyes. A broken, upside down wiper. Me, broken, my life upside down... 

 Ok, so Beta2 went down 10 points ^

 These don't look too awful ^

Ok, ok, yes... my IgA went up 10 points ^

Ugh, M Protein up too ^

My lovely compromised immune system

And yes, this one says it all: 

ABNORMAL! :))

I was grateful to return home safely, but not a happy camper psychologically. Still "shell shocked" Pomalyst wasn't killing off myeloma cells as I had "expected", stunned that my labs weren't better with plummeting myeloma stats, and overall just sad about the status of my life. So what did I do to "rebel" and feel better? Put on a coat, rubber boots and went out to my "happy place", the horse arena, and scooped the horse poop in the pouring rain. Quite fitting, don't you think? Shoveling poop, in so many ways, in my life...

 Pouring rain here.

These pictures don't tell the downpour story!

 Happy horsies, clueless to my situation

 And it cleared a bit,

then poured some more

I sloshed around and processed my situation

Poop here, poop there, poop everywhere in my life

Here's what I wrote to my Dr late last night:

Hi Dr P,

I've been doing a lot of thinking and reading, and I am "scared" to start Darzalex and Velcade together. I was looking over my recent myeloma stats and saw my Beta2 went down a whole point, the Beta Globulin went down a bit too. The IgA only went up 10 points and the M Protein .27

I do realize my upward trend, but if you are ok with it, I would like to consider the following for this next treatment cycle:

1- continue with Dex and Pomalyst for one more month, but at full dose, 4mg

2- or try Dex and Velcade

3- or try Dex, Pom and Velcade together

4- or try Darzalex singularly

Last option, I don't think I am ready for is the combo of Darzalex and Velcade, as side effects from 2 new meds may be overwhelming for me.
So sorry to be such a pain. Please let me know your thoughts. 

She's gone for the weekend, as her RN called me back... so we'll see what she says early next week. I was also informed that I was already scheduled for the chemo lab for Thursday, Jan 19... ummm NO!!!

Ok Myeloma Patients Out There... Help Me Out... Your Opinions Please!

Today, Friday the 13th-

Pondering: clouds, thoughts, choices,

fears, frustrations, sadness, anger

But it's hard to stay upset, when so much beauty

surrounds me...

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

Hello 2017 on the 7's

1.7.2017

Well hellllloooooo 2017! Happy New Year to everyone! We've all made it another year. Welcome to "posts on the 7's for 2017". Me, 7 years now tackling Myeloma. So surreal, right?! Hoping your year is filled with happiness, fun, success, dreams and goals coming true for you.

Me- onward I march in this crazy, unbelievable Myeloma battle. You're probably tried hearing me rant, post after post, that this cancer journey is so unreal and I still cannot fully connect with it or accept what has happened to me, but it's true, Myeloma is just "not me". Being a sickie is just not me. As I enter year 7 of treatments, medications, side effects, chemo-type changes, upward dosage changes, body changes, life changes, side effects ad nauseum, I remain hopeful that my current regimen will be effective and give me additional months and years! Today I will go for blood tests, and find out my myeloma stats this coming week at my next Dr appointment, Thursday January 12.

 Wish me good luck! 

Will be interesting to see how weekly 40mg Dex steroids paired with 3 weeks of Pomalyst 3mg alternated with 4mg, pummels (or not), the myeloma cells. I am hopeful, yet scared at the same time. What if Pom 3mg/4mg doesn't make a dent? What if myeloma is raging so strong, that I have to move upwards to 4mg? Then what if 4mg doesn't make a dent? I know I've been "spoiled" by initial super treatment success! Revlimid 10mg, with 40mg Dex steroids 4 days on, 4 days off, brought my cancer level from almost 70% down to 10% in 5 months, prior to my Stem Cell Transplant, July 2010. Then my SCT was a total success, and I was termed "CR"- Complete Response! I maintained CR with 5mg Revlimid maintenance for a little less then 2 years. I had "a life" back then too! From 2011 to mid 2013 I was able to work a bit (while on Revlimid maintenance), engage in a few fun events on steroid days, and go a few places (when not terrified of volcanic GI issues!). Then myeloma came roaring back summer 2013, and back in treatment I went... and here I am 2017, going on my 7th year of myeloma, my 4th year back in treatment after coming out of CR-remission. Whew, what a journey, right?! If you want the whole story, just click on the various years to the right, and I have all my monthly stats and stories there for your reading pleasure.

Throwback to 2010!

Here I am, December 2010, trying to be "normal", trying to take my life back, and return to work. I wound up getting sick from all the college cooties about every other month lol! This was my "poodle" style hair growing back, after I buzzed the last of my blondie locks, October 2010.

I'm happy to report that January 2017, so far... has been drama free, regarding all the dramatic illnesses I encountered in late November and most all of December 2016! So far no more cooties and sickness bugs have attacked me. But, I don't have much of a life, don't leave the house much, don't expose myself to many humans, don't go anywhere most of the time, etc. What a crazy life! But I would rather hibernate at home and be healthy, then go to "war" with all the sickness out there. The few humans I "allow" over, know to wash up the minute they come, put on shoe cootie booties, and be extra vigilant about cleanliness. OCD, yes... and proud of it, as I've NEVER had Pneumonia, or a terrible chest flu, etc... so there :))

Hoping 2017 is my lucky year!

Did I surprise you with my new "on the 7's" post? I'll be updating on the 7's, but I'll also post randomly in-between whenever I have "earth shattering news", no matter the date. Thank you always, to infinity, for checking in, reading, commenting and caring as you do. Hoping 2017 is an awesome year for you and your family, your dreams and plans! 

Here's several links with great articles and super helpful myeloma information. Great reads for the myeloma patient, caregivers, family, friends, and all you healthy people out there, who are mystified at what happened to me :))

Take your Shoes Off!

Vitamin Supplement "warning" 

Patient Power- Ask the Expert: Multiple Myeloma

Can Myeloma Be Diagnosed Early Through Chemistry and Hematology Panels? 

Great articles from Myeloma Crowd

Myeloma Dispatches: Mirror, Mirror On The Wall 

Great articles from Myeloma Beacon

MMRF- Invaluable myeloma information site!

IMF - Invaluable myeloma information site! 

Ask Dr Durie super helpful videos!

Well not really! 

My daughter gave this to me

as we looooove the Lion King movie!!

This was my NYE attire :))

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

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!