Hello Friends and Loyal Readers!
Yes, I have a positive update to share with you.
But as you know, Mondays are my Medication Madness Day, with first thing in the morning, downing 40mg of Dexamethasone steroids, then rushing off to my afternoon Dr appointment and Velcade infusion, then evening brings downing 8 Cytoxan pills at 50mg each, and it was just such a pretty day out, life just got busy, and I just didn’t finish my On The 9’s Post… and suddenly my tummy is feeling a little funny (it’s after 12am lol) … So I will be back later with my recent Lab results and a few stories, and some awesome pictures.
Hoping the beauty of Spring has come your way too!
UPDATE UPDATE UPDATE :))
Although my life and my hubby’s life has taken such a “tragic” turn over the years, I try hard to always fine the Humor in Tragedy. It’s that Fine Line, right!
Finally the rains have subsided a bit in CA, and we’ve had some lovely weather. My goal is to spend as much time outside as I can, capturing a bit of natural Vitamin D. Thankfully, I’m not sloppin around in the wet horse mud and muck anymore, wondering when I’ll do a Face Plant into the “green soup” or when my ol boots might suddenly develop a hole, while I’m sloshin around in the wet poop. I laugh so much at this when I’m out there doing horse pick up duties, thinking about this immune compromised terminal cancer patient still trying to be a ranch girl. It’s especially funny and ironic to me when I come home on Monday’s from chemo and my daughter and I head out to the horse corral to pick up “horse apples”. Wouldn’t my Drs and Nurses just shake their heads if they saw me. I tell them about it, and they just can’t believe my lifestyle. But honestly, I worry a whole more about HUMAN cooties and contamination than I do our “clean” animals. Which brings me to telling you about my crazy, hilarious, ridiculous morning routines now.
See back in the day, before Jim became mostly completely disabled from Alzheimers, his leg injuries and spinal stenosis, he would be up early, doing the inside animal and human chores such as emptying all the trash, recycling, emptying the dishwasher, letting the little doggies outside, doing the cat litter box, bills, business, etc etc, and doing so much outside I can’t even describe all the gardening, poop duties, dirt maintenance, mechanical maintenance, garage and barn organization etc etc. Then there was all the shopping, shopping, shopping he did. And he looooooved doing all of this. Seriously loooooooooooved doing all of this. But now, he just struggles to take care of his personal needs… and that’s where I’ve had to step it up, and do all the outside (with help from our Gardener and Adult Kids) and all the inside stuff, along with helping him with almost “EveryThing”! It’s incredible when a married team works so well together… and then so tragic illness sabotages it.
In doing all this STUFF, I am so cognizant of the POTENTIALITY of my FRAGILE BONES cracking, fracturing, breaking etc. If something happens to ME, our current life as we know it, IS DONE…
Yes I’m beat up from all of this, but always counting my blessings and good fortune for all the wonderfulness we still have.
But accomplishing all this is another story. Monday Dex steroid day is a good day for me. Tuesday, still riding high on steroids can either be a continued “good energy” day, or it can be a total wreck of Roid Rage frustration, resentment, sadness, anger, poor me, “I Just Can’t Do This Any Longer” total exasperation… but this Counselor always self counsels and I get through it, allowing myself my rainbow of emotions, trying to not direct it at others, but sometimes I do, and I’m not a “nice” person”… but then I get it together, and rein myself in, and put it all back in to perspective…. often apologizing for hours…
So yesterday, like so many days became a comedy of errors. Now that illness has taken over my life, and I’m retired, and I don’t have to live by an alarm clock any more, I often take the luxury of just staying in bed in the mornings, as I don’t worry about staying up late at night. It’s really a freeing experience to not worry about “actual clock time”, just allowing your body to do as it wants. But I’m coming to the realization, I can’t do this anymore, as so many “disasters” now happen in the morning, when Jim gets up before me.
Knowing Monday is a Treatment Day, I got myself up and going, knowing it’s best to get those 40mg of steroids into the system early, so they become most effective when I have my Velcade injection in the early afternoon, and then take the 8 Cytoxan pills (50mg each), for a total of 400mg. I’ve learned now also, that Jim just doesn’t get the little doggies outside soon enough, and our living room has become their secondary pottie area. Jim also is needing more and more help with his bathroom needs, changing, cleaning, etc. So after I get me together, it’s on to inside pee and poop duties. Human and animal… and yesterday was no different. Ugh, not what I want to do first thing in the morning… Jim needed help, there was doggie pee in the dining room, and our kitty and thrown up her food. Clean, clean, clean. I’m also having to do laundry daily now too…. So here I am helping Jim, cleaning up animal messes, starting laundry, trying to get Jim to remember how to swallow pills, and the Carbon Monoxide alarm starts beeping. And the phone is ringing, and the dogs are barking, and Jim is needing help, and the Carbon Monoxide alarm is screeching… non stop… screeching…
I head for the Laundry room, where I almost step in kitty Luci’s throw up, and smell a strong metallic gas like smell, but not the natural gas smell. I open all the windows to let out the smell, but I didn’t want to turn of the gas water heater, as this had happened a month or so ago, and I had the Gas Co man out, and he was certain there wasn’t a gas leak. And this didn’t smell like natural gas. So you can imagine all the chaos, and I’m just self talking, calming myself, shaking my head, laughing, knowing it’s just another day, like all the others, with all the unwanted surprises and challenges. Knowing the clock is ticking towards my Dr appointment and Velcade infusion… I continue the laundry, as the alarm continues screeching… I just laugh, knowing how ridiculously comical it all is.
I get all the pee, poop, throw up under control, get Jim all settled, call Maytag, take other business, medical phone calls, get things organized for when I leave Jim home alone, before our kids can come by on work breaks, to check in on him… and I get myself on the freeway to my appointments. I just shake my head at all the crazy challenges (that I haven’t even fully detailed here), thinking I’m the one that needs the caretaking, and I’m caregiving, caretaking of everyone, everything else. So funny, so ironic, as I remind myself of alllllllllllllllllll the times, of what I used to say, about wanting to “just be home” and take care of the critters, and just “hang out” …. well…. “be careful what you wish for” I laugh,… back lash extraordinaire… as I sure am home all the time now, “just hangin out” takin care of it all…
SO HERE’S THE GOOD NEWS amidst all the silly chaos…. with being sick for 2 weeks, not eating great, taking headcold medicines, etc, and taking a Week Off of Velcade, Cytoxan, Steroids,… my IGA only went up 30 points from 1230 to 1260!!! Not bad body, staying remarkably strong, fighting those stealth myeloma invaders and headcold cooties. AND HERE’S THE EVEN BETTER, SHOCKING NEWS…. the Serum Protein Electrophoresis test revealed… ready for it… NO M PROTEIN!!! Whhhhaaaaaaaaaattt??? How can that be!!! It went from last month’s score of 1.01 to “Abnormal, not detected”!!! No way!!! My Dr was very surprised too!!! How CRAZY is all of this. And my body organ stats, are all in low normal range. Go Kidneys and Liver, and other blood stats and organs! WBCs are 3 and RBC 3.6, but basically all others are in the low “normal range”. Just crazy. And to think I avoided Velcade like the plague several years ago and opted for Kyprolis, for fear of extreme Neuropathy, and was “terrified’ of Cytoxan, due to previous GI drama. Yes I do have some Neuropathy in my feet and left hand, and continue to have volcanic surprise lower GI drama, but it’s all liveable… well very limiting, but I don’t feel awful 24 7, just intermittently daily.
Ok here’s another funny story.
So my good friend, Jan, who also has myeloma, for several years longer than me, and is such an incredibly strong warrior, and also a horse crazy girl like me, has been “educating” me about Diabetes, Glucose, Sugars, Carbs, etc. I’ve always been “aware” of all of that, and have known of many cancer patients who have experienced Medication Induced, Steroid Induced Diabetes, but I basically eat, drink whatever I want now, and have been ok so far. Well to clarify, my “eating whatever I want” is probably a strict healthy “diet” to most, as I’m just a healthy eater naturally, and always have been. I’ve always counted calories, don’t do soda, alcohol, sweets, much pasta or meat, etc. But on steroid days, happy days, frustration days, I often just have that extra slice of toast, or a few cookies, or in the summer, ice cream. So in light of the years of 20mg or 40mg of Dex steroids, I asked my Dr if we should, could check my Glucose status. She checked my last test and agreed it was time again. So she wrote for both the blood test for my next pre chemo labs and finger stick in the chemo lab.
So off to the chemo lab I go, readying for my Velcade shot, and my sweet volunteer friend Karen brings me a few packages of Graham Crackers. I don’t eat before I leave the house, as you’ve read over and over again of my “No Explosive GI Drama Away From the House” Fears… so by the time I get to the chemo lab, I’m pretty hungry. Well STUPID Julie, you’re not supposed to eat before taking a Glucose status test. Karen and I and the nurses laughed at this, but we still did the finger stick status check. But taking in to consideration 40mg of steroids earlier and about 4 crackers later, my level was elevated a bit, but not bad. I think 162? How’s that Jan for 40mg Dex in me and some Graham Crackers??? ahahahaa!!! I’ll make sure to not have eaten for my next blood test!
Well, that’s my story, and of course there’s so much more… the daily chores are hilarious for our circumstances, and something’s gonna blow up one day… but I don’t live in fear, I take each day as it comes, allowing for my roller coaster emotions and absurd maintenance duties. I feel so bad for Jim, as he’d love nothing more than to be the “work horse” he was before, and me… yes, I’d like to go back to 2007… but that’s not reality, so onward we go, one event at a time, one Dr appointment at a time, one Monday Medication Madness day at a time, and one poop mess at a time…
And finally, I was able to make and keep a little day trip date, on a beautiful sunny CA day. Of course I couldn’t eat before I went, and couldn’t eat there, and I even put a little trash can in my car, as a back up “porta pottie”… just in case ;))