Hello Friday The 13th!
7.13.18 – Friday the 13th.
It’s so ironic, and so fitting that I’ve had awful, pain beyond painful pain, these last few days, as 8 years ago this month, I was at City of Hope Hospital, experiencing all the yucky Melphalan chemo, Stem Cell Transplant Crash side effects. I was in the middle of the process, with my CBCs near nothing, feverish, trying desperately to survive and heal, fighting to become me again, desperate to get from the hospital to home.
So how fitting I had my first Zometa infusion on Tuesday, along with finding out about my Broken Rib. Of course my “friend” Dex Steroids propped me up that day, but it was all downhill from there these last few days, and I thought I would never come out of the pain, fever and awful physical suffering that I endured from early Wednesday through all of Thursday, and Thursday night, and into today Friday the 13th, and I suspect onward for several days…
I wrote the following thoughts early this morning, after 2 1/2 days of the worst bone, muscular, nerve, feverish pain I have experienced in a very long time, if ever? I don’t know… I have so many incidences of pain to recall now, I can’t remember…
True (unfiltered) Confessions of a Tired Cancer Warrior
Sitting on the edge of my bed at 2:30am weeping from the depths of my extreme pain, and frustration with my ongoing, never-to-end-battle with myeloma, I questioned whether I could keep doing this… The pain was just unbelievably excruciating…
8 1/2 years is a long time, for me at least, to be sick and in a constant battle with my body.Too long (for me, who used to be so healthy), to be constantly challenged. I am fighting an internal monster that is much stronger and smarter than my body, and eventually always stronger than all the medications I have taken or will ever take. Myeloma will always mutate and outsmart any treatment I do. I will never have a break, never “remission” without continuous chemo. Never, Ever.
Simply put, if I want to live, I must treat, always, continually, non stop. This is my myeloma life sentence. Yet I am so tired fighting and feeling awful for most days of every week, except on steroid days. I am not as strong everyone thinks I am. I really am not.
To be candid friends, most of my (facebook) posts, where you all so kindly compliment me on my smile, my energy, my fighting spirit, are the days I am all “Roided up”, “Dexified” (as my dear myeloma cowgirl Jan calls it), on powerful medical steroids. Dexamethasone is a fun, crazy making medication the first day or 2. It energizes me, gives me fake euphoria, temporarily heals my body, mask’s pain and even has strong myeloma killing properties. But as anyone who drinks or drugs knows, the crash crashes you, and the physical awfulness eventually overcomes, enveloping your body, your entire being for days.
So I retreat into a yucky blah, for days, only to surface again for the same drill. Chemo, steroids, chemo, steroids, chemo, steroids, the next week, the next week, the next week, the next week, for my forever… Imagine knowing that EVERY WEEK OF YOUR LIFE, YOU WILL BE SICK from side effects. Every week you must plan your life around when to be sick, when to crash, when to feel awful. Every week for the rest of your life.
And the crazy irony is I’m “sick” from side effects of medications trying to make me “well”. Yes, I have to be sick in an attempt to be well. I have to be sick, to survive, I have to be sick to stay ahead of myeloma.
BUT WHAT SENT ME into the depths of “I CANT TAKE THIS ANYMORE”, “I dont know if I can keep suffering like this any more, with literally no end in sight”, was the horrible, unrelenting PAIN I experienced from Tueday”s new IV bone strengthener, Zometa infusion.
I expected side effects and was mentally prepared for “something”. But the something turned in to a fever as high as 102 -103, with unrelenting deep bone pain and body aches as I have never experienced. The depth of pain is truly indescribable. I couldn’t get relief. Yes, I only do advil and tylenol, as I don’t want to chance another side effect making me feel sick.
The unrelenting deep ache was overwhelming. I paced, I sat, I reclined, I stretched, I walked, I kneeled on the edge of my bed, awkwardly angled to try to sleep. I tried a heating pad, Solanpas, and those menthol minty ointments. I hydrated, but had little appetite. I cried and I cussed. The fever exaggerated the pain too. And at my depths, I looked skyward and cried, “Why me, Why?” “I can’t do this anymore”…
I’m really not strong friends. Well yes, mentally I am, but not physically. I can handle most things of a psychological nature, but each time I am confronted with REAL physical pain, I crumble. I don’t know how most people who live with worse challenges than me, do it. And in comparison, my challenges are tiny, compared to others. I am not strong friends, and I am so very tired of this battle…
I woke up today with less a fever, and without as much killer bone, nerve pain. I can breathe better, and I have a better perspective. I still feel like I was hit, rolled over by a giant tractor with huge spikes, but I am better. But I don’t think I will do this medication again… I am not strong, I hate pain, and I hate suffering.
Thank you for reading and being loyal blog followers!
Live happy, live well, and make a difference somewhere, somehow,
with someone or something as often as you can!