That term... "No Pain, No Gain". Ha, Lie!! For me, pain is absolutely debilitating physically and mentally. No "gain" for me. Pain causes me to "rethink" my life when I am so incredibly miserable. I know pain has a biological, physiological purpose, to alert us there's something wrong, something going on... but geezzz, can't there be an "off" switch for it, once we get the message.
I remember all the pains I had from FUN things I used to be able to do. Outdoor sports, horses, playing with my kids, family trips, animals, etc. Muscular pain from that was annoying, and yes painful, but it has a positive cause. There is not positive purpose, except the physiological awareness-alarm, to this awful, take my breath away pain I've had since steroids wore off last Thursday, July 5th, my 8th SCT anniversay.
Here's what happened:
You can see from my previous post, I managed to have a fun 4th of July, of course because of DEX STEROIDS masking side effects from my chemo day before lol. But on the way home July 3rd, I caused a crazy, stupid, random injury to myself by swallowing water wrong!! Yes, swallowing water wrong! I always try to hydrate well prior to and after my Darzalex infusion, and speaking of that, I must grab a water bottle NOW to hydrate for my 2:00pm, FIRST ZOMETA infusion...
Anyway, on the way home Tues July 3, I took a big swig of water as I was driving, and managed to swallow it wrong, which for me, causes me to need to choke, spit out, cough and sneeze all the same time. This reaction has been exaggerated since my SCT, so something must have changed in my Esophagus? So anyway, in that split second event, I had to choose to spit out in my car, or suppress, repress the choke, sneeze, cough. Well I made the STUPID choice to repress, suppress, restrain that urge, and pushed down the cough, sneeze, choke, awkwardly swallowing the water. You know that feeling when you repress a sneeze. Bad for anyone, but super bad move on my part, as apparently sitting seat belted in, I managed to jar and shock my body into a horrible muscle spasm!
I immediately felt a shocking sharp, searing, tearing, stabbing blot of pain, pinching and ripping in to my Left side rib, chest area, under my bra. Absolutely took my breath away. I kept driving, tried deep breathing, adjusting my posture, and doing mini stretches at the red lights. (Yes, I routinely take the street route home after chemo just in case I am not ok, and can easily pull over). But thanks to Dex steroids, I didn't feel incapacitated at that time and continued home. For the rest of evening and into July 4th, I felt a deep suppressed pain, but it was definitely masked, buried deep, unbeknownst to me, ready to attack in the next several days.
The 40mg steroids I took Tuesday morning suppressed and masked the pain for about 48 hours, but I could feel the deep intense pain coming on, in the middle of the night, Thursday. By this time, I had already done 2 of the 4 Zarxio injections to up my WBCs, so I thought maybe the pain was exacerbated by that, or was being caused by what Zarxio Neupogen is supposed to do... grow more White Cells fast.
Late Friday night, I Googled Left side pain, and was alarmed that it could be my spleen or other vital organs, which is a side effect from Zarxio! I continued to read more about muscle pain, tearing, spasms, and causes, and the good and bad of steroids, as the pain intensified. I learned there is definitely muscle weakening and "muscle wasting" from steroids, and there's differences between all the different types of steroids, Dexamethasone being the strongest. It was too late to get myself to Urgent Care, so I took more Advil, and a muscle relaxant I've had on hand for times like this. Made me think of how many times since Myeloma, I've had excruciating muscular pain, tears, spasms...
"Prednisone is 4 to 5 times more potent than Hydrocortisone and has a longer duration of action, perhaps 12 hours or more. Dexamethasone is 40 to 50 times more potent than hydrocortisone and even longer-acting, 18 to 24 hours.
"Steroid myopathy is damage to the muscle fibers caused by treatment with corticosteroids, such as prednisone, cortisone, dexamethasone and fludrocortisone or overproduction of steroids associated with Cushing's disease. Myopathy causes changes in muscle fibers, including atrophy (shrinkage), lipid (fatty) deposits, necrotic (dead) areas and increased interstitial (connective) tissue between fibers. You may have severe damage to the muscles while the muscles appear normal in size."
"Muscle wasting, weakness with Dexamethasone
myopathy is the most common type of drug-induced myopathy
commonly used glucocorticoid can cause myopathy, it is implicated more often
with the fluorinated glucocorticoid preparations, such as dexamethasone,
triamcinolone, and betamethasone. Switching to a
non-fluorinated agent are associated with improvement in muscle weakness."
Those are just a few statements from when I Googled muscle pain, spasms, wasting, etc, regarding Dexamethasone and various steroid side effects. If you haven't before, Google it, very interesting...
So my mind is racing and my body aches. I'ts difficult to breathe, or breathe deeply. I take short little breaths. I can barely adjust myself in chairs, and in bed the pain is so intense, even with Advil and Flexeril. Every time I shift my body, I get searing, tearing, sharp awful stabbing pains. And I can barely get in and out, of a chair. Lying in bed was worse. I could hardly adjust my self one way or another. Just ridiculous and debilitating. I question "everything" at this point, and ask myself, what I do with my beloved animals when they are in pain or in a medical crisis: "Am I Prolonging Life.... or Extending Death".... I'm so miserable at this point...
The days roll into themselves, with me just trying to breathe, move, and get by to the next day, with hopes the extreme pain will diminish. Friday rolls into Saturday, into Sunday. Of course my family is urging me to go to Urgent Care, but as always I resist. I'm so miserable and painful, I couldn't bear the thought of going anywhere in a car and trying to speak to people about my situation. So I don't. Meanwhile, I take Advil hoping it's anti inflammatory properties kick in. I question my life, what I'm doing, what happens from just a random event, that would probably not even affect the "normal" person. I think about everything I have been through in the last 8 years. I think about how all this will be never-ending, and I'll never get a break, and it's only going to get worse. I think and think. I'm so frustrated with what happened to my life. Inwardly I cry "no fair", "why me", "how come". What really is my life now, or to come... I look at my property, animals, family, and remind myself how incredibly blessed I am. I shut down my negative thinking...
Sunday and Sunday night was the worst. The tearing, searing immobilizing pain. But I am very careful how much Advil I take, as I don't want to cause damage to my Liver, Kidneys, etc. I still wonder about Zarxio and my Spleen, but I didn't think I had a spleen crisis, as I don't have those symptoms, thank goodness! But just in case, I didn't do the 4th Zarxio injection...
And in the middle of all this, when Advil quieted my horrible pain just a tiny window, I took our Box Turtle to the Vet to have his nails and beak trimmed. I had made and cancelled this appointment too many times, so between immobilizing moments, Dot the Turtle had his pedicure :))
Monday, as I wake up and begin move around, I feel some relief. I haven't had any medication since Sunday night. I realize relief is coming, slowly, but on it's way. I continue to move as if I'm made of glass. I do this because of my Myeloma "holes". I do this because of muscular issues. I hate living like my body is glass, but I hate pain more. I take an Advil and wonder what the day will bring. I move slowly, aware of every ache, pain, tearing sensation. I am so angry at my body's betrayal. Slowly, with an irregular Advil, again worrying about my Liver and Kidneys, I feel slow relief. I move ever so tentatively, but I know I must move and try to unstiffen these stiff, pulled, torn, spasmed muscles. I admonish myself for my stupidity for repressing the cough, sneezed last Tuesday.
Now you know why I couldn't post on my "regular 8", July 8th. I started a post, but gave up. I was a mess. Overcome with pain and frustration. Today, Tuesday July 10th, I am leaving soon for my FIRST ZOMETA IV. My pain is better, but of course, guess why??? Yes, today is Tuesday, and when did I last take my weekly steroids? Yes, last Tuesday! So good timing with my weekly, or should I say "weakly" Dex steroids... to the rescue today. But with all I read, I only took 20mg of the "requested" 40mg.
Also, I did call Urgent Care today, and I will go in for an xray after my infusion, unless the infusion makes me feel yucky, but I suspect now, because again, Dex to the rescue, I'll be ok... today... Who knows how I will feel when my nemesis Dex wears off in 36, 48 hours??? Ugh, waah, waah, waah,... I have to deal with the new Zometa side effects, on top of the muscle spasm, on top of the steroid crash, and oh yes, did I mention, I started my 1,000,000th cycle of Pomalyst Sunday night! Really life? Is all this for real or am I just writing a fiction novel here?
(Sincere apologies to those reading this who have much more intense life challenges than me.)
Onward I march daily,
because I "have to",
because I want to...
because, because, I must...
Here's my Lab results from last Tuesday's Dr appointment:
Still no MProtein
Maybe masked by Darzalex?
Darn, IgA over 3x the high end of normal
Not too bad, but WBS = super Immune Compromised
ANC was .8, therefore my Dr prescribed Zarxio
And so dear friends and followers, near and far, that's my story for this week. I keep hoping for a BORING BLOG POST, but Myeloma just wants me to keep all of entertained. As always, thank you so very much for caring as you do. Hope your life is as smooth as a lake sunset.
Live happy, live well, and make a difference somewhere, somehow,
with someone or something as often as you can!