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..
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!
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!
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!
They make me smile, and remind me of the life I once had,
but still fortunate to partake in, in a very limited way.
Thank you for caring and following my ridiculous myeloma adventures.
Sending💜Hugs and many prayers.ReplyDelete
Thank you so much for your friendship and support Suzanne! I truly appreciate all your offers of help! One day... yes, I will "need" Nurse Suzanne! Thank you! xoxo love you!Delete
If you say it was the worst pain you ever felt then I can't imagine how terrible it was since you have become an expert in the last several years. After the worst pain I ever felt they handed me a newReplyDelete
I glad the dex gave you relief.
I hope I made you smile! xo
Hi Fern! Thank you so much for checking in and letting me know you've read my crazy adventures. Yes, you definitely made me smile with your comment :)) It's been a challenging time for me, and I'll take all the smiles and laughs that come my way!! Thank you for all your support Fern! love you! xoxoDelete
Oh Julie, my heart is aching for you right now. I am so sad that you have to suffer so much with this STUPID CANCER! I appreciate your raw honesty and how you, somehow, manage to get back up on the horse so to speak. You have an amazing spirit. I am so happy God sent you that beautiful sunflower to give you some sense of joy and hope. I love you. GayReplyDelete
Thank you so much for your kind support Gay! Yes, great analogy of "getting back on the horse"! Wish I could do that literally lol! Thank you for appreciating my "rawness". All my challenges have really pushed all my "raw" buttons, and the longer I am challenged, the more "raw" I become, cuz myeloma's challenges are really getting to me, especially coming up on my 7 year anniversary! And yes! The sunflower continues to grow larger and even more amazing! Thank you for all your support Gay! love you! xoxoDelete
I have been reading your blog now for about a year, and am always excited when a "6" comes around. Your honest descriptions of your frustrations and challenges with myeloma are refreshing, and your ability to find the good and wonder in life inspirational. I understand your love of horses, and how they help with your outlook. We have an American Oldenberg (Rocky), who just makes me smile with his mere presence. Him along with my 3 dogs and 3 cats help me through some of my toughest times. I am sorry you had to go through the back pain, it can be quite excruciating. Unfortunately bone and back pain are a large part of my myeloma experience, and I usually have to resort to taking an oxy for relief. Please keep writing, and I hope you feel better soon.
So sorry for that horrible experience. that is exactly the pain I had when my T 10 collapsed. I couldn't stand up. I'd literally fall over. Of course, I was too stupid to go get X-rays to know what was up so It was 1 1/2 years later till I was diagnosed. You really need to get an X-ray and see if you've got a compression fracture. They may be able to do Kyphoplasty(sp) if it is. I hope it's not ....ReplyDelete