See Ya March

Hello 3.29.19

Life's been very challenging and busy lately.... and not in a "good" way. I had a great idea for this On The 9s post, but "stuff" kept happening and I just didn't finish writing what I wanted to share, in the way I wanted to share it... so I'll just wait until my next post...

Thanks for checking in, and caring as you do. I know your life is complicated too. Everyone's is. I lived with the naive thought that the older I got, the simpler life would become. Nope. No such luck...

I'm doing "ok"... but grappling with new challenges that challenge me in ways I never thought I could be challenged. I am processing so much sadness, so many lost dreams, lost lives and plans. It's incredible how fast illness changes things. As awful as my myeloma diagnosis was, is... Alzheimers is exponentially worse. At least I can process my illness, my treatments, my status, my future. Alz steals everything.

The Sad Similarity: both are Incurable.
The Gigantic Difference: Myeloma is Treatable, Alz is not...

This was not the topic I was going to write about... but this is the topic that stole my post.
See you on the next 9. And until then, I hope your life brings you joy and fulfillment, minimal pain, and only positive challenges.

Thank you Evelyn and Neel 

for the stunning daffodils!

Caught a little Vitamin D today

with Nala and Jack :)) 

A Little Good News for a Change!

Hello 3.19.19

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.

And for a look back in history:

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 ;))

Beautiful colors!

I managed the 107 steps down to the lake
and back up to my car!

Finally was able to go for a little

adventure with some sweet girlfriends!

Thank you Linda and Kathy for being so patient

with all my medical side effect cancellations

This little field trip took over a year to happen

because of my crazy health complications

Sudden bloom in our backyard!

Our hens are finally laying again!

First green egg in over a year

from our Araucana Hen

Sunset in the fruit garden

Puppy play date :))

I Miss My Life Before Illness- Too Honest Contemplations...

3.9.19

Hello March...

Thank you to all of you that messaged me about February not having 2.29.19 and "cheating" us out of my "on the 9's" post :)) I debated posting on the 28th or the 1st, but I really didn't have any new myeloma news or inspiring stories to share, and I wound up sick with a lousy sore throat, head, chest cold, that I am still battling, and I just haven't felt very good... or inspired :(( 

Yes, I'm too aware that my updates now have a similar melancholy theme, and I wrestle with this blog becoming a whiny, "poor me syndrome" rant. But it is what it is, and my life on so many levels really is "a poor me syndrome" story now. My life has become almost completely centered around illness. Centered around the daily tasks to just "get by", to attempt to feel somewhat ok, and to manage medical side effect nonsense that goes on in my life, as a patient and caregiver. Take this pill, do these chores, micromanage this and that, take this medication, visit the bathroom, do theses chores, clean here, clean there, try to eat something interesting, contain emotions, take this pill, do these chores, process life, visit the bathroom, clean this, clean that, take more medication, control emotions, etc etc etc. Caring for me, and being a caregiver for my Alzheimer husband is honestly taking a huge tole on this once, positive, optimistic, happy go lucky, playful, passionate about life, gal. 

In all of this, I work hard to not fall down the negativity rabbit hole. I am always self counseling, always reminding myself of the wonderful things still in my, our life. Reminding myself of all the good things, and blessings abound in our life. Reminding myself of all the wonderful life experiences, events, careers, family, animals, health care, etc, we had, have, that so many do not. But dang it, when illness steals your life, and your entire life is centered around trying to feel and be ok, with the never ending physical and emotional demands of that... it's hard not to be sad, weepy, why me, how come, with terminal illnesses, that honestly Will Not Get Better. Our individual situations may stabilize here and there, but Unlike so many other illnesses, where one can look forward to being well eventually, Myeloma and Alzheimer's are just not in that category. Myeloma is insidious, ferocious, incurable, and must be treated continually, forever and ever. Non Stop Chemo to keep myeloma suppressed, and me alive. Alzheimer's just gets worse every day.  Every Day. Stealing one's mind, body, life. There's no going back on either one of them. There's no getting better, just trying to have better days.

I am not bitter or resentful of others. Jealous and envious, yes, of their freedom. I am happy for everyone's good health, or recovery from their illnesses. I cheer on those that can truly enjoy the life they've worked hard for. But I am so sad for our predicament. So sad for our stolen lives. So sad for what could have been. We're 2 people that worked very hard in life, to have a good life. 

I wrote these random thoughts to myself in a text message, late one night:

Illness has stolen my life, my spirit, my freedom, my spontaneity 

There was so much I wanted to do and accomplish 
So much I had looked forward to at this point in my life
So many friendships I wanted to nurture and grow 
So many events I wanted to participate in 
After working hard all my life, I just wanted to play my second half of life
I wanted to continue to learn, give, create, inspire and be inspired
But illness steals your spirit, your energy, your motivation, your ability to do much at all 
Illness has stolen my ability to accomplish, do, engage, go, be me
Illness is like a stealth snake, creeping in, attacking, retreating, attacking again, retreating again, curling up in a corner, waiting, always ready to attack 

I'm not depressed, I'm sad
I'm also angry. I never was an angry person. I have anger now. 
I'm depleted, exhausted, physically and mentally
I wake every morning, having planned during my sleepless hours, all the things I want to accomplish 
But illness has stolen my energy, my ability to accomplish all my ideas
Illness has almost stolen my spark
I know who I used to be, I know what I am capable of, and that frustrates me even more

What really is my purpose now
Am I just living to die, just existing, just getting by each day, to get to the next... For what?
I remind myself about all those that depend on me, love me, need me
I live for everyone else, caring for everyone else, resenting my body for how it has betrayed me, and how yucky it feels most all of the time

Illness surrounds me 24 7, and has stolen my life
Stolen my dreams, my ability to accomplish my goals
I had so many
So many dreams, things I wanted want to do, accomplish
My life was cut short, completely changed at 50, 9 years ago

Yes so many people reinvent themselves after illness, tragedy, disaster, etc
But I didn't want to reinvent myself
I worked hard all my life to create who I was, and by diagnosis time, I liked who I was, I liked the path I was on, I liked where I was headed, and what my future held for me 
I had so many "mid life" dreams and goals, so much I wanted to accomplish between 50-100

But illness won't "allow" me to be me anymore
Illness stole me
Illness changed me
Illness deflated and depleted me
I didn't want to change, I didn't need to change
I've done so much positive growth awareness all my life
I just wanted to become more of who I was
Continue to give to others
Engage in life
Participate in life's joys and beauty
I miss being spontaneous

So many are confronted with life crises and want to change
So many have wounds to heal, new goals to achieve
I didn't want to change, I just wanted to become more of who I was
I wanted to complete me, do more of what I was already doing
Continue to help others complete themselves
Help other help themselves
Save creatures
Now I can barely help and save myself 

My life was stolen from me 
My lurking stealth snake, sneaks in for the bite, takes the bite, injuring me, but not killing me, but injuring me more each day
I'm still alive, my body is still alive 
My mind is too alive
My body and soul slowly dying

I sound so ungrateful for all that I have
I am not
I am mourning who I was
Who I could have been
What I could have accomplished
Who I could have become, the 2nd half of my life
I mourn my stolen energy 
My enthusiasm 
My spark
My get up and go
My ability to inspire and be inspired
I mourn stolen options and opportunities 

I miss intellectual connections with friends, students, colleagues. My life was all about connecting with others, analyzing deeply with others, sharing insights, becoming more of who we are. But Myeloma and Alzheimer's has stolen my life, my energy, my spirit, my daily functionality. 

I can only try to stay one step, one pill, one infusion, one treatment ahead of cancer eating me up alive. Similarly, Jim's disease is stealing his life every day, as he's really just "existing"... it's so tragic. We are both living to die, our bodies and our diagnoses own us, and I don't pretend otherwise. When, not if, this current treatment fails me... then what... I'll find another one, then another one, then....

Yes, within it all we have moments of sunshine, moments of laughter and love with family and friends. Moments that remind us of the joys of life. But sometimes, the reminder of what was, and what could be, is too painful. There's a vacancy about my life now. So many abandoned rabbit holes, just waiting for me to slip and fall into..

I had a beautiful life, and for that I am forever grateful
I have a beautiful life, but it tortures me with what could have been.
I still have love, loved ones, comfort and occasional humor in my life, and for that I am forever grateful. But I silence myself, my dreams, my plans...

Loyal readers-
I debated whether to post my inner most feelings like this. 
Is my honesty and candor too much?
Perhaps I should limit my posts now to just my myeloma status and lab results? 
Thank you to those that have read this far, and continue to read and follow along with my life challenges... 
I hope your life is "working" better for you, than mine is for me... and I hope you are feeling well, and those you love are are well too.