First Myeloma Status Labs of 2020

Hello 1.20.20

Hi Everyone,

Today was the usual Monday Medication Madness of 40mg Dex Steroids first thing in the morning.
Then one Velcade shot in the belly jelly in the aftternoon.
Then 400mg of Cyclophosphamide chemo pills with dinner.
How’s that for a Myeloma pummeling triplet cocktail, that so far has done the trick since about September 2018!! Hoping to stay on this madness for a long time, as I’ve got the routine down, and I can somewhat predict the weekly crash and side effects.

Yumm Yumm!
Get in there Velcade and do your thing!

I have a Dr consult in person this coming Thursday, and should have all my Myeloma status labs by then. I always silently “bet” with myself if my numbers will be around the same, or down, or up…
Not sure what I’m feeling, guessing from yesterday’s labs… hmmm…. what’s your guess?
I only cheated with doing half the Dex steroids back in Dec, but have been a good patient ever since. Back to “high dose” 40mg Dex weekly, so maybe my myeloma numbers are status quo, or down? I have figured out that when my WBCs are low, I get a bigger reaction from Dex, then when my WBC is higher. And I was shocked at my CBC results from yesterday!

My WBC is a shocking “high” of 3.7 (which often means I am sick, or getting sick), RBC low tho, but all my organ status labs, creatinine, calcium, etc, are in the low to normal range. How can that be?? How can this ol bod tolerate 10 years worth of continual chemo, meds, immunotherapy, etc. How long have you been in treatment, and continually on treatment?

You know those cancer articles, TV pharma commercials, poignant news features of one’s loved ones being on chemo for 6, 9, etc weeks, or months, and the families are devastated with what happened, then fortunately able to celebrate treatment success… Well I do a mental gulp (sometimes a pissed snicker if I’m on my steroid crash), at the “short” treatment time mentioned,… as what I and my Myeloma buddies would do for a short treatment outcome, not to mention, being “done” with chemo!… My heart truly hurts for anyone’s diagnosis, but TRY DOING 10 YEARS WORTH OF TREATMENT, not 10 months!! Try knowing your treatment is forever and endless, to “the end”… Honestly, lucky them for being able to “ring the bell” of being DONE with chemo treatment in a “short” amount of time. Ring the bell, ha, not this gal, thanks to Myeloma’s incurable status. Not bitter, just facts, just reality. Sorry I keep perseverating on this, but I’m just still so surprised and shocked with my situation. This just can’t be! How can I have cancer? How can I have incurable Myeloma? How can have been on weekly chemo treatments SINCE 2010!!??

Some of my Myeloma status labs will trickle in before my Thursday appointment, but some are not released until I see my Dr. But I will update this post as the lab results come in, so check back if you’re curious my MM status.

All else is continued loony bin ridiculousness here… again, just can’t wrap my head around how our lives became all about sickness, illness, side effects and dysfunction. Just mind bending. If you know us personally, you get this shock. But as I always say, I have so much to be grateful for, especially considering the BIG PICTURE out there, and what I read on all the myeloma social media posts. Wow, the suffering and challenges are just unreal :((

Here’s to hoping your’re able to work on your 2020 dreams and goals.
My top goal for 2020 is “Less is More” regarding slowly sorting thru all our 38 years of stuff… I have so few “good days” where I have the helium to do this, but thinning things out, and storing away the sentimental mementos is my top priority. It used to be that if my inner self was at peace, calm, organized and joyful, all was ok. Now, forget that LOL, it’s all about the external visual. Lessening perceived visual chaos, which in turn lessens my inner chaos, and brings a sense of calm and peace to my life. Our awesome caregiver Chris moved my (finally packed up!) bins and bins and bins of Halloween and Christmas decorations out to our “storage trailer” in the back. Sadly this now “storage trailer” used to be Jim’s off road toy trailer. Shows how much our life has changed, and the sad symbolism of a fun vacation trailer, becoming a storage shed :((((  Jim would be so sad if he could comprehend all this, but sadly, his Alz self just can’t process our reality. He does know when I’m gone to chemo, and wanders around the house and property (with his caregiver) looking for me :(( He still tries to do horse chores, as that’s the old routine embedded in his psyche. Just such a tragedy on every level for him, as he was so healthy, and so active, and should have had old age fun as an old ranch guy, just moving around slowly, but functional, picking up the horse poop, planting roses, raking the dirt, cleaning the barn, shopping for us, etc,… He loved nothing more than “doing”, being busy, doing. He’s just “existing” now…

We never know what’s coming down the line for us. And I certainly did not anticipate the big ol train wreck we are…

This is what I had hoped for…

May your dreams continue to come true, and your life goals always be in process…

First Post on the 10s for My 10th Year of Myeloma Survival

1.10.2020

Happy New Year!
Happy 10th year of Survival to me :))
Hello to 2020 and Blog Posts on the 10’s!

Of course I had so many ideas for what I wanted to write this first post of 2020, the first post on the 10s, of my 10th year of Myeloma survival…

But
But
But

All those ideas are still simmering, and stewing and brewing…
Just don’t want to start off 2020 with Negativity, Sadness, Frustration, Disappointments, and being Melancholy… So this post will be all about many the things I am Grateful for, within all the overwhelming unexpected life changes I have had to confront, accept and adjust to…

Yes, I have so much to be Grateful for!
Where do I begin…

I’m grateful for modern bathrooms, specifically MY bathroom
I’m grateful for toilet paper and wipes
I’m grateful my body can process in, and out, all the complex, chemical treatments I currently endure and have endured for over 10 years to survive the 10 years I have! …

And with that… I’ll be back! Because you know why…

====================

Things I Am Grateful for this new 2020 year:
Surviving Myeloma for 10+ years with the type of life I
still have
So grateful for-
Medical Science Research creating all the chemo chemicals
saving my life
Scientists, Doctors, Nurses, Pharmacists, Pharma staff,
All Medical Staff
My incredible Insurance that pays for all my treatments
The convenience of Kaiser treatment centers so close to
me
The friendliness of most all of the staff members I
encounter in person and on the phone
Goes without saying…
I am beyond beyond beyond grateful for all the Loving, Caring, Supportive, giving, helpful, helping people in my life!

Beyond grateful for my loving Family, amazing Caregivers, sweet Friends, Supporters, You, people that
work for us, help us, and those that understand and empathize with our medical disaster

So grateful for all the people that create, make, process, sell, deliver all the products
and services we need to stay alive and maintain the life we have

I am so grateful to be living in a country that can
provide the all the Health Care available to me and others suffering with
health issues
I am grateful for all the modern conveniences that make
my life easier to navigate
I am grateful I have a car to get me to treatments
I am grateful for all the mechanics, technicians that
make my vehicles safe and for the Auto Club that rescues me when my battery
dies
I am so grateful for electricity, water, heat, and all
the appliances in my home
I am grateful for all the Veterinarians that take care of
my critters
I am grateful for all the people that grow hay for my
horses, and for Fox Feed that delivers to my barn
I am grateful for all the companies that make and create
products for all the animals we have that we rescued

I’m grateful for all our animals that give us so much love and laughs
I’m grateful I am able to still care for all of them
I am grateful for my old horses getting older with me
I am grateful for all the lives we’ve saved

I am grateful for all the food producers, farms,
companies, businesses that create the unbelievable food choices that Americans
have
I am so grateful for technology, connecting all of us
together, and connecting everything together, and making my life so much easier
as an incurable, immune compromised, never ending cancer patient

I am grateful for TV, as I never watched so much TV in all my life, since being a sickie
I am grateful for books, magazines, and anything I can read, and the authors that write as they do

I am so grateful I am able to grateful
I am so grateful I am able to write about what I am
grateful for
I am grateful for all the years Jim and worked and worked
and worked, so we are able to stay in our home, despite the complete
devastation from both our awful, terrible, incurable illnesses
I am so grateful for the 35 amazing years I had as a college counselor 
I am grateful I still have a functioning brain
I am grateful I still have a functioning body, no matter
how awful my daily, weekly side effects are
I am grateful for all my senses. Every single one of them
are so vital to quality of life.
I am so very grateful for the beauty of nature, this
earth, the sun, the sky, the moon, the stars, the animals, the trees, the flowers, the grass, every single part of nature I am so grateful for
I am grateful for all that keeps this life going that I
know nothing of
I am grateful for the power of the Universe that I don’t
understand, but hope to one day…
I am grateful I am still independent, and can basically
do whatever I want, whenever I want, however I want, … although I really can’t do much of
anything because of daily, weekly side effects, but I am so grateful for the
option that I can, if I could
I AM SO VERY GRATEFUL FOR MY LIFE AND FOR STILL BEING ALIVE!

Later today I have CT scan on my Head, as I’ve had non stop headaches for about a month now. Started with the lousy head cold I had mid December 2019, then continued and continued and continued. So I finally went to Urgent Care last Friday, and the Dr ordered the CT head scan. I know I have pre existing lesions, holes and a “hard” external tumor-lump on my head, so it will be interesting to see what the scan shows… more on that next post on the 10’s!

Thank you for reading and caring as you do! Hope all is well with your 2020!

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I Made It… 10 YEARS Ago Today I Was Diagnosed with Myeloma!

Hello 12.30.2019
Bye Bye 12.29.2019

Yes, Bye Bye to posting on the 9’s
Hello to posting on the 10’s

Yep, this girl made it to 10 years since my Myeloma diagnosis. Very surreal, still not able to fully absorb all this cancer nonsense, but it’s my life.

Yesterday was December 29, 2019, the last 9 of this year, and of this decade! Wow! How did that happen :))

I wasn’t feeling up to posting a post, as I’ve had a lousy head, chest cold for over a week. And as my bugs go, they start with a headache, which I often can’t differentiate from chemo side effects. Then the headache morphs into a sore throat. And from that, I know I’m a sickie. The sore throat then morphs into a bit of sneezing, and that morphs into my chest, with all the lovely coughing and hacking. Fortunately, it didn’t go deep, and I never had a fever. But the worst part for me is as a result of the muscular action of blowing and coughing, I pull chest and rib and shoulder and back muscles, often spraining or fracturing something along the way. If you’ve been reading my blog for years, you’ll remember my posts around this time of year, with awful muscle, nerve, bone pain. So here we go again, same story, different year.

As always, I never expect to have the things happen to me that they do, as they do, so I didn’t think I’d be suffering this long. Had this thing for almost 2 weeks now. The headcold part isn’t the worst, it’s the disabling muscular, nerve, bone pain, and non stop headache. So for the last several days, I’m eating Tylenol and Advil like candy, along with hugging a heating pad, along with taking a muscle relaxant at night. What a way to ring in my 10 year diagnosis, survival anniversary and 2020! I still want to do a BIG party for my 60th birthday and 10yr cancerversary… I’ll let you know when that can happen. Everyone will be invited!

And that’s not the entire ridiculous story of our life this month.
I’ll just highlight, as it’s too tedious to tell, and you’re probably tired of all my downer, negative stories.
Jim’s situation continues to be so challenging. The mood swings and physical challenges he goes thru everyday are just exhausting, painful and completely draining. Alzheimers and Dementia are just so awful.

I continue to be everything to everyone. Having to navigate all that is required to keep our lives and household afloat, all the while doing chemo and related side effects. Yes, I have lots of help, but it all still comes down to me having to micromanage everything. Just visualize all you do to make your life and household work… I’m in charge of it all, not by choice, just what it is. I lost my “do it all” guy.

Had to have a big part our roof repaired, redone due to rain leaks from last year.
Had electrical work done for faulty wiring… could have caused a fire in part of the house.
Jim has fallen several times this month, necessitating the need for others to come and assist.
Classic Alz mood swings are happening more often, you can read here for Alz details, just awful…
My vehicle battery died when I went to pick up a Wal Mart Grocery order one evening at the start of all this cold weather. Had to replace that.
Christmas Eve, after Jim’s falling incident, the carbon monoxide alarms began screeching at 1:00am
Due to the holiday, had to wait for hours and hours for the Gas Co tech to come.
Had to have all the Gas appliances off, till he arrived at 5am… after calling in around 1:30am…
Yes, up all that time, with windows opened, no heat in the house.
Gas Co tech discovered something crazy in our main house water heater. It was emitting “aldehyde”, a byproduct of natural gas not being vented, burned off properly.
As a result, no hot water for a few days, as this happened on Christmas Eve, Christmas Day.
Replaced 2 water heaters, as the other one was very old, and leaking.
The “aldehyde” created Soot in the pipes. So crazy. Have you heard of this? Ever experienced it?
Yes we could have “died” from the fumes emitted. Thankfully daughter Alissa was here to help, and encourage me to call the Gas Co. I just wanted to smash the alarm and ignore everything going on.
And more falls, more mood swings with Jim.

Then to top it all off, all my horrible tweeked muscles, nerves, bone pain from all my coughing reared it ugly self… The pain is just horrible and temporarily disabling, along with this mysterious non stop headache…

On top of everything else, and this may seem small to most, our horse hay was delivered was wrong. See as the horses get older, I transition from all Grass hay to part Alfalfa hay for the cold winter nights. I have the grass hay and alfalfa stacked in 2 separate rows. Well the delivery guy stacked the alfalfa in the back and grass in front, so we’re not able to access the alfalfa. Big deal you may think. Yes, just one more thing to deal with, with the possibility of medical issues with the horses.
Alfalfa hay is very rich, like us eating pasta, steak and cheesecake all the time. Horses have the chance of “Foundering” from it. Also known as Laminitis or “Cushing’s” disease. Our mini pony has this, and therefore must not have free access to Alfalfa hay. Anyway, the routine is messed up, and I’m too sick to deal with it, so let’s hope for the best, and our horses don’t get sick….

And on top of the top of all this… I received news my Myeloma numbers are climbing again. I only “cheated” on the Dex steroids 2 times, where I took 20mg vs the usual 40mg, and boom up go my numbers.
My IGA went up 200 points to 899, M Protein up to .81.
Normal for IGA is 70-400
Normal for M Protein is zero

And there’s so much more, so many more things that have happened, irritants, disappointments and minute by minute challenges. So many challenges, so much to think about, I’ve just let it go… I had a meltdown in the barn on Dex steroid crash day, the other day… I cry and laugh. Cry and laugh. Cry and laugh. Then get up and get going, and push it all away. Alissa happened to come out, and I felt bad her seeing me that way. I used to process everything psychologically, and encourage others to do the same. Now, I STUFF more stuff than I ever have my entire life…

Well, this post was going to be a 10 year recount of strength and resilience, celebrating my 10 year survival over Myeloma. But I’m just too beat up to pretend it’s all ok, and that I love life, and all is great and wonderful. That would be a lie and huge misrepresentation.

So cheers to surviving Myeloma for 10 years as of today! Yes, this time today, 10 years ago, I became a Cancer Patient. My previous posts recount my perspective over the years. Hopefully I’ll be full of hope and gratitude my first post of 2020!

Happy New Year to all, and I do sincerely hope you have wonderful holiday celebration with your loved ones, and cheers to health and happiness for all of us, right!

Here’s to 9 years of myeloma diagnosis posts:

2018
https://juliesmyelomamoments.blogspot.com/2018/12/9-years-ago-today-i-learned-myeloma.html


2017
https://juliesmyelomamoments.blogspot.com/2017/12/happy-new-year-you-have-myeloma.html


2016

https://juliesmyelomamoments.blogspot.com/2016/12/7-year-myeloma-diagnosis-anniversary.html 

2015
https://juliesmyelomamoments.blogspot.com/2015/12/6-years-ago-today-and-im-still-here-to.html

2014
https://juliesmyelomamoments.blogspot.com/2014/12/5-years-ago-today-boom-mm-forever.html

2013
https://juliesmyelomamoments.blogspot.com/2013/12/

2012
https://juliesmyelomamoments.blogspot.com/2012/12/

2011
https://juliesmyelomamoments.blogspot.com/2011/12/

2010
https://juliesmyelomamoments.blogspot.com/2010/12/

And onto 2020 with my posts on the 10s!

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Waiting for Results… Full Denial 10 years ago..

12.19.19

10 years ago yesterday, 12.18.09, I had my first Bone Marrow Biopsy.

The physical pain was excruciating, but it was the psychological effect that was even deeper. I was suddenly participating in a medical world that I couldn’t relate to, or wrap my head around. Being sick, seriously sick that is, was just not part of “my plan” or “who I was”. 

I was on a ride I couldn’t believe I was on. I was thrown onto a roller coaster I couldn’t comprehend, nor accept. I heard new medical words and terms that I had never heard before. I followed my Dr’s lab test assignments as if I was doing it for someone else. Everything became an out of body experience. I was robotic about so much. My life at that time was a combination of normalcy, disbelief, not feeling well, denial, yet still a sense of nothing had really changed. I began to read things online, but “cancer” truly didn’t enter my thoughts, and no one had yet said that word…
Yet…
My next “Hematology” (still “Hema-whhaattt?”), appointment was scheduled for Dec 30, 2009. The day that changed my life forever… that changed everything about me forever. But I didn’t know it at this time, 10 years ago…
Holidays, fun, friends and family was the plan in the meantime. My Dr had put me on Iron pills for my extreme Anemia, and some other meds too, I can’t recall now, and ordered more Labs for after Christmas. And more Labs. Every time my Labs came back, she ordered more. I wasn’t able to see the Abnormal ones online….

Life moved forward fairly normally. I went about all the things we did around holidays. Busy busy, party party. Yes, I still had all my symptoms, but I never ever thought about me having a serious diagnosis…

10 years ago I was “dying” from cancer that was eating me up alive, and I had no clue…
What my Bone Marrow Biopsy revealed on 12.30.2009 was shocking!!!
I’m still in shock…

Back in the day when we were healthy… 
this was maybe 2003!
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December 14, 2009… And So IT Begins…

December 14, 2019

10 years ago today…
Yes 10 years ago December 14, was my very first Hematology Oncology appointment at Kaiser.

After extensive, surprise, extra detailed blood tests, beyond the “normal, regular” labs done for “routine annual physicals”, I was referred to Hematology… Hema… what, I questioned??? They must have mixed up my labs with some sickie with a similar ID number…
Oh yes, I was the sickie, but I didn’t know it…

I’m pretty sure my GP doctor knew what was up, as he was super Urgent with my Hematology referral, which I delayed from November to December, thinking, ya ya, I’m ok, nothing wrong with Super Woman Julie… just super fatigued, just bleeding out a lot, in several places daily, just breathless, just achy, just so tried I could hardly function, just lots of weird headaches, dizziness, bone aches, so thirsty all the time, always getting sick from all the college cooties… ya ya, nothing wrong with me… I’ll just drink more Red juices to bump up my blood strength, and maybe eat a steak or 2 more often. Nothing wrong with me, but what the heck, I’ll go to this appointment in Hema-whaaaateeevvvverrrr…..

When I checked in, I even said to the super nice check in girl… “I’m sure I’m in the wrong Dept”, and “I’m sure this is a mistake”, “I’m sure I don’t belong in this Dept”… and “how weird, Oncology is in this Dept too”. “Oncology… hmmmm… isn’t that Cccccccancer related”… Yep, I’m for sure in the WRONG Dept….

I checked in.
I waited for my appointment.
I met a new lovely doctor.
Who talked to me about my labs, asked me how I was feeling. Took a lot of time asking me about symptoms, which of course I down-played.

She sent me for more labs that day.
Then scheduled me for more appointments with her.
Then sent me for more labs after those labs… “Stat”… what’s Stat?
Then called me one day, and I actually answered my cell…
She said certain labs showed I was very sick. I should be hospitalized. I need “blood products”… huh??? Me? No, must be a mistake. Jim is upset I’m not taking all this seriously. I refused hospitalization. I refused blood products. I’ll just drink more Red juices. Eat more steak. Wow this is fun, I can eat and drink what I want, and still Lose Weight!!! I’m fine….

More Labs, more phone calls. More symptoms. More ignoring it all. I was just fine. Bleed on!

End of the semester stress. Student Finals. Stress. Lots of desperate students. Stress. Holidays coming. Stress. New Years coming. Lots going on. Stress. I’m not going to the hospital. That’s for sick people. I’m not sick. I just have some weird symptoms. Maybe just end of the year stress. I’ll just drink more Cranberry Juice and eat more Steak…

And then I was scheduled for a Bone Marrow Biopsy… a What??? I think Scott Googled it and said, “Wow Mom, that’s a really painful procedure”… I don’t remember if I Googled it… My first BMB was scheduled for December 18, 2009….

Nov 22, 2009
Whoo Hoo 50!!
I didn’t feel well here. 
Never did eat my cake :((
Nov 22, 2019
Whoo Hoo 60!!
Wow, Myeloma hasn’t won yet
10 years post diagnois!
Still so surreal…
This can’t be MY Life…. 
And so the journey began.
But I didn’t know what journey.
For the first time, I cried a lot, on Dec 18, 2009, during my first Bone Marrow Biopsy. Shaking, sobbing, crying.. reality hitting type crying…
I knew then I was seriously sick. I just didn’t know how sick, and with what…
The story continues 12.19.2019
Thank you for reading, caring and being interested in my life story. 
Stay well. Stay happy. Create the best life you can, with whatever your circumstances are. I’m trying every day. Trying to stay positive and optimistic, under our dark cloud of Myeloma and Alzheimer’s…
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The December Countdown to 10th Dx Anniversary Begins!

Hello December!
Hello 12.9.19
Hello to The Big Countdown to my 10th Myeloma Diagnois Anniversary!

Most are counting down to Christmas and New Years.
I’m counting down to December 30, my Life Changing 10th anniversary of hearing the word Myeloma. Learning I had 70% Myeloma eating me up alive.

December 30, 2009 forever and ever changed my life…

10 years surviving vicious cancer!
Would have never thought I’d make to my 60th birthday.
Never would have thought I’d beat Myeloma for 10 years.
Never would have thought my body could process all the medical chemicals I put into my body to stay alive.
Yes I think about this daily
Yes I think about being a myeloma cancer patient daily
Yes my thoughts are consumed with my status
Yes medical stuff and illness overshadows EVERYTHING in my life
Yes I’m grateful
Yes I’m pissed
Yes I’m happy some days
Yes I’m angry some days
Yes I am medical miracle
Yes I am beat up, exhausted, fatigued, burnt out, sad, mad and overwhelmed
Yes I am. I am. I am still here and super proud of it.

November birthday girl!
Took 20mg Dex Steroids this morning, instead of the prescribed 40mg. Just want to see if I feel any different today, or if it affects how I process my treatment today, and also want to see if I can beat up Myeloma at a lower steroid dose. Been on 40mg for longer than I remember now… How can my body still be ok on this powerful stuff for 10 years!! 
Off to Velcade soon, be back to upload what I wrote the other day…
Edit or not edit? Post it or not post it?

Did you see my amazing Snow pictures on my last post? So lucky to have made that snow drive. Rarely get out. Was such a treat. So few “good days”…

Julie the “dog whisperer” :))
Hope your day, and holiday festivities are happy and healthy. Stay away from all the cooties my myeloma friends! It’s “germ warfare” out there :((

Thank you for reading and caring as you do!

In the meantime, check out these great treatment articles from the Myeloma Crowd!
https://www.myelomacrowd.org/myeloma-news/

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GoodBye November! (Snow Road Trip update!)

11.29.19
And November’s a wrap…

Hello to December in just days…  Big Month of my 10 year Myeloma diagnosis!

CA had a crazy winter storm the last few days! Snow in areas that rarely get snow! So we took a drive today. Will be back with some really awesome pics!

Hope you had a wonderful Thanksgiving with your loved ones. We did.

I’ll be back to share some super fun pictures :))

===========================

Yes my BIG 60th Bday came and went, had several wonderful surprises at home, but no BIG GIANT celebration… I’ll post some pics on my next Dec post.

Thanksgiving came and went, and had a wonderful little family dinner at home… will post a pic in my next post also.

But what was the BIG beautiful news in all of this, was the incredible SNOW STORM So Cal had. So many of you reading this will be, ya ya big deal… Snow. But for So Cal, this was a Winter Wonderland experience for all of us. Not often the snow level gets down as low as it did for this storm. It was fun to experience, but also a reminder to me that I wouldn’t, couldn’t live in super cold weather at this time in my life.

So caregiver Chris and I loaded Jim in the car, and took a quick drive to the local mountains for a sightseeing trip. I did worry, what if the road closed, what if a storm moved in quickly, what if we got stuck somewhere as so many drivers were experiencing. Any of those would be disastrous with our medical complications… But I tossed caution out the window, and off we went. At one point the opposite side of freeway suddenly had zero cars and traffic, for miles and miles…  I suspected my worst fears had come true: maybe the freeway was closed due to snow and ice! We were going to be stuck! Have you seen the news reports of freeways at a dead stop with thousands of cars going nowhere! People stuck in their cars for hours and hours! I always wonder what they do for heat or a/c or supplies or going to the bathroom! Truly one of my greatest fears since both our diagnoses!
Turned out HazMat closed the freeway for some sort of hazardous spill, and it was cleared up when we returned on that side. Thankfully, we made it to the beautiful snow covered hills and back with NO drama!

Of course before we went, I had to wait for my lower GI system to clear to be able to go on this little road trip, and couldn’t eat or drink before or during the tour, but that’s the price I’ve learned to pay for any event I want to experience. They say, get out and have fun. Just go Julie. Live Life. Be Happy. Do Things. Don’t let all the medical issues limit your life. Ya Ya… few can fully understand the hindrances I have and what prevents me from doing much at all… I also think friends and family have “cancer fatigue”, where they are tired of hearing of my status, side effects, how my life has changed, and how battling incurable cancer for 10 years has affected me so deeply. I think I’ll write a pity party on that, next blog :))

In the meantime, enjoy these beautiful snow drive pictures!

Winter Wonderland
So pretty!
So much snow everywhere!
This is So Cal! Seriously!
Caregiver Chris and me
Unbelievable snow
at the shoreline!
Pyramid Lake
This lake is usually full of boaters and seadoos!
Lucky us, beautiful drive accomplished
Welcome to December everyone! Hope you can enjoy and not stress over the holiday busyness! All our medical stuff has so changed my ability to do things, and therefore… I have had to accept my inability to do what I used to do. So cheers to hot chocolate, spiced cider, a crackling fire, friends and family, and no malls for me :))

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Big Birthday Coming Up… Sorry Myeloma, This Time I Won :))

Hello 11.19.19

I generally have my blog posts written in my head, ready to post on the 9’s, but of course all our darn issues and medical complications here, always seem to sabotage my best writing intentions. I often send drafts to myself at the most unusual times, as I seem to have some of my most inspirational writing moments when I’m in the Horse Arena Picking Up Poop!!! ahaha :))  Or very late at night when brushing my teeth. Have you ever looked at the patterns of your toothpaste splatter in the sink as you brush your teeth? I see “messages” there all the time…

Sometimes, I think I should just post my raw, unedited thoughts, then I realize I am writing to World, and need to be careful what I put out there… but I love Authenticity and Spontaneity. I love to just write from the moment, from the gut, from the heart. Just letting it all spill out from what’s circulating in my damaged brain.

So I think I will this time… but after this little “announcement”…

Today is “gradual” crash day from yesterday’s “Monday Medication Madness Day”, so I’m starting to feel kinda yucky… Yes still weekly treatments of 40mg Dex Steroids, 1 Velcade shot in the belly jelly, 8 Cytoxan Cyclophosphamide capsules at 400mg. I keep posting about this, as I’m always so INCREDULOUS how my body tolerates all this stuff injected in to me, ingested, digested in my tummy. And that I do this every single week, no breaks, no time off, every single frkin week. I think it’s all so amazing I’m still here, and coming up on my 10 year Myeloma diagnosis Anniversary next month!!!

And speaking of Anniversaries and Birthdays… drum roll please… :))
This Friday, Nov 22 is my Big 6-0 Birthday! Yep, diagnosed at 50 and here I am, 10 years later, turning 60, against all the odds and “predictions”!! Never, ever thought that I would see 60. Many would “hide” this number from the world, but I’m super duper proud I am still here and able to do and be me still. 60 years on this earth! Incredible. Sounds so OLD, but I sure don’t feel OLD on “good days”, and sure don’t feel like the stereotype of what 60 sounds like, or I used to associate with 60. Whoohoo, I’m OLD!! I’m a “senior citizen” ahaha… sure don’t feel like it mentally! And on Dex steroid days, I don’t feel like it either!

Be right back… with my raw and honest post from the horse poop… :)))
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Hoping to not offend any of you battling other cancers, or all the other awful life “illnesses” and challenges out there everyone is dealing with, but honestly, there’s just something different about battling the Life Long “death sentence” of Myeloma. From day one of diagnosis, I was told THERE IS NO CURE FOR MYELOMA, BUT IT IS TREATABLE… ya ya I thought then, no BIG DEAL. Treat and Get on with life, I thought at the time. I really wasn’t that scared or worried. Just take some meds, do the stem cell transplant, and get on with life, get back to work, get back to life, get back hobbies, etc… ya ya, Terminal, ha, it’s Treatable, they said….
WHAT I REALLY DIDN’T AND COULDN’T PROCESS AT THAT TIME, WAS THE REALITY OF LIFE LONG TREATMENT IF I WANT TO STAY ALIVE…
What I really couldn’t and didn’t process was what it would be like to treat an Incurable Cancer FOR LIFE!
What I really couldn’t process then was the Continual Cycle of Treatment and Side Effects… Every Single Day, Every Single Week, forever and ever and ever and ever, if I want to stay alive.
Can you even grasp the concept of doing chemo EVERY SINGLE WEEK, AND BEING SICK EVERY SINGLE WEEK, NO BREAKS, NO TIME OFF.
Can you even grasp the thought of ANTICIPATING doing chemo every single week, and anticipating and dealing with yucky side effects Every Single Week. I couldn’t grasp or process it then, and I still wake up shocked every single day. Shocking writing this, as THIS. IS. MY. LIFE. This is my Reality.

I’m invited places all the time. I want to make plans all the time. I want my previous life back all the time. I want to work, play, do, go, be who I used to be, all the time. I want to go back to being “normal”. I want to say Yes, to going places, doing things, playing, working, doing projects, having the energy and normalcy to do… but I just can’t. The fatigue from myeloma and treatments and side effects is disabling. I feel more and more nauseated as I write this, as Monday’s chemo side effects are hitting more and more each minute. I don’t know if I’m hungry or nauseated. If my head hurts from thinking, or from the medications. I’m thirsty, but I don’t want to swallow or drink anything, but I know I must. Everything is yucky today and tomorrow and the next day. Imagine a life of forcing most anything and everything. Of doing everything and anything because you HAVE TO, not because you want to, like BEFORE MYELOMA… My Halloween decorations are still sitting out, needing to be put away before Thanksgiving and Hanukkah and Christmas, and New Years comes. There are storage boxes to go through, years and years of stuff to go through… but myeloma always sabotages….

Everyone says get out there and do things. Live your life. Be happy. Go places. Ha! Ya right. And have near misses with GI issues. Force going places when you feel sick and dizzy and achy. People just can’t grasp that I look as good as I do, but I feel so yucky. My personality is to “grin and bear it”. “Fake it til you make it”. And I’m a natural communicator. So I force energize myself and my conversations, when I really don’t have much helium at all. But then there are days… when I just can’t. And that will be tomorrow, Wednesday, my worst day… But I still have to pull myself together to be “boss lady” here, as I’m still in charge…

They say don’t make cancer your life, or your identity… Oh really? 
With treatment every frikn week. 
Side effects every every frikn week, how can cancer NOT be my life?!
Live your life they say
Be happy they say
Get out and do things they say
Be happy they say
Yes to all of those, but how, when you feel so awful?
How “happy” would you be with a Terminal Cancer Death Sentence?
How “happy” would you be with a husband with Terminal Alzheimer’s who used to do EVERYTHING and was MY CAREGIVER!
They say, get on with your life, don’t make cancer your life, don’t let cancer control you. 
Really how is that possible when treating terminal cancer IS MY LIFE, every day, every week, forever and ever to my infinity.
Really, how can I not make cancer my life, when cancer crept in my life and made my life all about cancer, and illness, treatments, and sadness, and overwhelming challenges every day… This is not a choice. This is not something I opted for, or chose in my life. It’s not a decision I made. It’s a decision that my body made for me. Yes how I respond psychologically to all of this is a choice, but what happens to me physically, I have little control over… 


Everyone says just be happy. Well I am very happy some days. I do feel ok some days. But my REALITY IS I AM A CANCER PATIENT FOR LIFE. NO OPTIONS IF I WANT TO STAY ALIVE. I must do chemo every week to stay alive. I must suffer with side effects if I want to stay alive. Cancer is my life, as Cancer invaded my life and became my life. It is my reality, and I cannot pretend differently. 
Most other cancers can be treated, and the patient achieves remission, and moves on with life. Myeloma is different. Myeloma is incurable… myeloma is for life. 


So cheers to surviving a decade after diagnosis. This makes me happy and proud! Cheers to being as “well” as I am, after 10 frkn years of treatment and my body trying to kill me. Cheers to turning 60 on November 22! I had plans to celebrate in many different ways, but reality is that can’t, won’t happen because of chemo side effects. This is not a poor me, pity party. It’s my reality. No I am not depressed. No I am not angry. I am just explaining the Reality of my REALITY… 



So I pulled myself together the other day, and didn’t eat or drink beforehand, and managed to get me, Jim, caregiver Chris and 3 of our little doggies to the super fun annual Bark For Life event. This is the doggie version of the American Cancer Society’s Relay For Life. Here’s a few pictures of my “Mutts For Myeloma” Team. So much fun! Also, my Myeloma blog buddy Matt came out to the event so we could finally meet up! It was so wonderful to finally meet in person! Thank you for making the drive Matt! Pretty amazing all the incredible people I’ve met through this blog, despite awful myeloma being the catalyst for us meeting.


Go Team Mutts For Myeloma!

Aren’t we all cute!
Look at all the cute doggies!!!

He’s an 8 year survivor!

Me and my daughter Alissa and our darling “littles”

I’m pretty worn out here 
But “fake it til you make it” right!



Thank you for reading and checking in, and caring about my life and story as you do. Hope all is good in your life, and if you’re a myeloma patient or cancer patient, I hope your treatment road is as tolerable as possible. 


I’ll be back to edit this again, and again and again. 







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So Much Myeloma Everywhere!!!

Hello and Goodbye 11.9.19
Hello 11.10.19

So yesterday I attended my local Myeloma support group, that I have been attending for years… (I’ll have to ask our facilitator how long I’ve actually been going)… Wonderful group, wonderful facilitator/leader Theresa! I have benefited so much from attending this group. Have learned so much from everyone’s stories of treatment, their life with myeloma, and sharing cancer survival skills… The meetings are informative and emotional. Some meetings are Medical/professional speakers, other meetings Members sharing their Myeloma stories. Yesterday we had a large group, with quite a few new members. Newly, recently diagnosed, to one man, WHO HAS SURVIVED AND LIVED WITH MYELOMA FOR 32 YEARS! YES 32 YEARS! That’s not a typo! I still can’t get over it. His story gives all of us such hope!!!

Driving there I was teary and emotional, as I haven’t attended in months due to my husband’s rapid Alzheimer’s decline, and the challenges of both our illnesses, along with the recent CA fires surrounding that area and mine. But on top of those emotions, I was super sad and reflective because my neighbor and special myeloma buddy Gary, (who I attended with for years (along with his wife Pat, and my hubby Jim)… had recently passed away this August… So driving there alone, without any of them, really affected me. Just so much loss on so many levels personally, along with seeing the burnt hills, so close to homes and the Reagan Library, was just so sad on so many levels…

At the meeting, there were so many stories of all kinds of myeloma treatments, successes, failures, hospitalizations, medications, medications, medications, stem cell transplant stories, challenges, challenges, challenges, etc… but what impacted me the most, were the stories of horrific bone issues, compression fractures, bone breakage survival, bone surgeries, Kyphoplasty, etc… I need a lesson in Human Anatomy and Physiology to know what parts everyone was referring to!!! Brought back memories of my status this time last year, with my awful painful plasmacytoma and lesion issues, resulting in Radiation in December 2018… But in comparison, I feel so fortunate with my treatment success and limited pain issues compared to so many… more on this… as my Horse Farrier is here now, to trim the horses hooves… then more “stuff” here to attend too, then off to take weekly blood tests, then, then, then…. see there always so much going here… but in perceptive… I’m so very lucky…

In the meantime…. here’s our Anatomy lesson for the day… as so many bones were mentioned in medical terms, I know not what they are!!!

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I’m back :)) ….

There were so many stories at the meeting regarding how most people were initially diagnosed with myeloma because of severe bone pain, bone issues, bone breaks, bone surgeries, etc, it was mind bending. So many stories of kidney failure too. When I was diagnosed, my presenting symptoms were extreme horrible blood test results (clearly showing myeloma), extreme fatigue (I thought was work/life exhaustion), extreme anemia from bleeding out (which I thought was allergies and “girlie change of life”), breathing issues (which I thought was from being out of shape), and a terribly compromised immune system (which I thought was from being exposed to so many students).

But the stories! OMG :(( One lady, who has been a member for a while like me, and also a horse gal like me, was diagnosed when her neck/spine collapsed. Area C-something in the graph above. She was at her ranch, teaching riding lessons, and doing something in the barn, when cccrrraaaacccckkkk, went her neck… So many stories of extreme bone pain, bone fractures, lesions, on and on and on… So the “pity party” I came to the meeting with, quickly turned to gratefulness of my status.

Whoops, here comes Jim needing help, and our caregiver has left…
I’ll try again to update…

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Thank you loyal blog followers for your concerned messages regarding me not posting on the 9 yesterday…
Just so much going on here, and I never get the private time to write, as I used to… Not enjoying being “boss lady” in charge of “everything”….

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