Stop with the Challenges Myeloma! Enough is Enough!


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! 

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!