Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Friday, April 19, 2019

Meltdown 101

4.19.19

Hello world...

This week was total MELTDOWN week for me... Total Emotional Meltdown :((


So much to tell, share, let go of... but I am too beat up, too exhausted...

So here's the headlines:

Had to call 911 for my hubby on Tuesday, as "he fell and couldn't get up"...
He was taken to ER, fortunately ok, nothing broken, fractured
On top of that, he's really declining each day
New challenges for him, me, our family every day
Never ever expected any of this sadness and illness chaos
So much physical and psychological challenge every day...
So much body betrayal on all levels



Had my monthly Dr appt on Monday, with lousy news:
IGA up 200 points, @ 1440 ...(normal = 70-400)
Last month's "no M Protein" was a misread or fluke
M Protein is actually up, at 1.19 ...(normal = zero)
Beta2Microglobulin is 2.3 ...(normal = 1 - 1.8)
Light Chains = low or normal

New changes:
My Dr and I discussed increasing my Velcade and Cytoxan dose
If you've been reading my blog for a long time, you know my response to that... NOPE!
One change, one increase at a time for me
Less is more
Let's see if one increase works
Let's see which increase causes which side effects, rather than increase both, and not know what side effects are happening from what

So I agreed to increase the Velcade dose
Received 2 lovely injections on Monday
Had nausea later the next 2 days
Ok now, better
Hopefully this increase will pound myeloma's ego back a bit
............

I had a complete emotional meltdown this week... not about me
I'm learning to reach out and ask for help
It's ok to ask for help, it's ok to not be strong
I call medical professionals more now, than I ever did with my cancer situation
I cry, yell, sob, scream, talk to myself, talk to the Universe, and experience the spectrum of intense emotions more with my husband's situation, than I ever did with my myeloma diagnosis, treatments.
I am just completely overwhelmed and devastated on so many levels.
Of course my treatments and side effects complicate it all, but watching him decline and see Alzheimer's completely steal who he is, how he is, what and who he used to be able to do... is just so incredibly tragic, awful to see and live, day in and day out...

I'm sooooooooo beat up...


I will write more next time... I hope.
Thank you for reading and caring, and checking in!






Tuesday, April 9, 2019

This Life, These (awful) Challenges, These Joys

Hello 4.9.19
Hello April
Hello Friends
Hello another month of unwanted challenges and wonderful times
Hello to tears, frustrations, meltdowns, laughs, good times and gratefulness
Hello to Life with 2 Terminal, Incurable Illnesses...


Here I am, riding on 40mg Dexamethasone Steroids, writing this post, late at night, early morning... as again... my life is just so crowded with sooooooooo many needs and caregiving, but also with many wonderful times. You don't even want to know how late it is, rather how early it is, this 4.9.19 lol.

Crazy how my husband's Alz situation has so taken over our life, and Myeloma is somewhat in background now. What? Myeloma in the background!! I hardly have time to focus on me, pay attention to my side effects, and take good care of me as I used to... We'll see what my labs say in a week about this. I really don't know how I am doing all that I am doing. Just one foot in front of the other, one task at a time, one need at a time... And it's so bittersweet when Jim says "Thank You" for the caregiving things I do. He'll thank me for giving him cereal and milk, saying "how delicious it is"... one foot in front of the other, one task at a time, is what I do. I'm not always a "nice" person. But I am learning fast to edit my words and what I say, constantly telling myself, "Just Shut Up Julie" "Shut Up, Shut Up, Shut Up"... "It's the disease Julie", "He can't help what is happening to him, and what his needs are".... Laundry, laundry, laundry. Living with 2 heads on my shoulders... Animal care, but lots of animal laughs too. Lots and lots of bathroom "activities". Lots and lots of cleaning and sanitizing. Then Luci the 9 year old kitty cat throws up. Something has changed with her, and all the food I am trying, is not agreeing with her... remember when I was diapering our 20 year old cat... what a wonderful comedy show my life is! But I always remind myself, except for our incurable illnesses, most of my current responsibilities were a previous "choice". All of the critters we are responsible for, we invited to live with us. Bodies get old and fail. Bodies get sick. Bodies need care. I, we, committed for life, human and animal. So I march forward, one chore at a time, trying to take healing deep breaths... reminding myself to just breathe...


I say myeloma is in the "background" now,... as myeloma has CONSUMED my life and thoughts for over 9 years. Side effects, treatments, appointments, researching treatment options, talking about it to anyone that asked about my situation, constant wondering Not "If", but "When" my current treatment cocktail will fail. No I am not a pessimist, remember Myeloma is Incurable, Terminal, but Treatable... Reality is Reality. I feel so fortunate right now that my current crazy "Monday Medication Madness" of 40mg Dex steroids, 1 Velcade shot in the "belly jelly", then 8, yes 8, 50mg Cytoxan pills with dinner, is still "working". Add in Acyclovir daily to prevent Shingles, low dose Aspirin, a few vitamins- B12, D3, Thyroid pill, and Mepron (anti viral pneumonia liquid, when I remember to take it)... I just cannot believe how my body can digest and handle all this! All my organ status labs are good, very good according to others who's aren't as low as mine. Maybe it's all the diluted (100%) Cranberry juice I drink for hydration. Yes, myeloma has taken a back seat to Alzheimers. Insane situation from every perspective. Oh wait... lest I forget... my myeloma is still over 3x the high end of normal... I'm in "ok", not ok, status...


I still have Surprise Volcanic diarrhea, which leaves me housebound on crash days, and other days, as there's often a lot of "Surprise" to this side effect. This all too familiar event visits me on days I think I'm ok. Or it visits me at a time of day that surprises me. So thankful I am home, when this biological surprise sabotages me. I was out in the horse arena yesterday, lovely warm day, soaking in the rain nourished green trees, green hills and the flowers bursting out, when suddenly, and yes I mean Suddenly, it's wow!... get to the house now Julie! I "barely" made it! I'll spare you the details. That's the suddenness and surprise of this crazy cleanse side effect. No cramps, no pain, just total Urgency. It's the "cleanse" non cancer patients "pay for" lol!

How can life be so awful and wonderful, at the same time. Why did we both get so sabotaged with such serious illnesses. Yes I always knew Jim would age faster than me, being so significantly older than me, but seriously Universe... all he wanted to do in his retirement was walk without pain, garden our property, do healthy outdoor chores, enjoy the animals and his family, etc. His life is completely stolen from him physically and mentally, with moments of clarity here and there... Our life is a bad movie, that I just can't believe I am unwittingly participating in. But again... I have soooo much to be thankful for, in others areas of my life.

My labs from Sunday show I am borderline "Neutropenic".
WBC = 2.4
ANC = 1.2
RBC = 3.5
HGB = 11.7
CREATININE = .65
GFR = 97
ALT, AST, AP, BILIRUBIN = all quite low (low is good in this case)

I take the Myeloma specific labs later this week, for my Dr appt April 15th. Can't believe how fast the weeks go, but I am glad they are, for multiple, complex reasons... but in this case, so I can see my monthly cancer status. How crazy this 9 year journey of living Lab test to Lab test is, just to stay in touch with my survival status. Currently my IGA "is only" 3x the high end of normal" lol, at 1260, (normal rage is 70 - 400). I didn't get around to taking screen shots, that's why I'm reporting all this like this. (Booo on Kaiser's website "upgrade" view, as I have lamented previously.)

I mean seriously, how nuts is it to live like this, wondering when myeloma will overpower the treatment, and we have to race to figure out the next "smarter than myeloma" treatment plan. When I write all this, I just smirk and shake my head, how UnReal all this is... what the heck happened in my life... oh well... onwards, one challenge at a time...

In in between all this medical nonsense, chaos and unbelievable physical and psychological challenges... our son Scott turned 33 and our daughter turned 31! We managed some wonderful celebrations, that I never thought either Jim or I would be here for. How "lucky" are we!

Here's a slice of the happy side of our life:

This Is Us

Happy 33rd to my Amazing son

Birthday boy Scott and my dad Hal
Who's 92, and in better health than all of us!

Ashley and Jim and the doggies

Birthday boy and the doggies

Yippeee! Our hens are laying an egg or 2 a day

Wonderful mini visit with Alissa's 
amazing childhood friend Michelle

Chemo today before the birthday celebrations
Cancer knows no holidays

Spa date with the girls! Alissa's childhood "pony pal" friend, 
who's now a DVM! So proud of you Dr Courtneigh!

My Amazing birthday girl!

The 31st birthday crew! Love them all! Lucky me!

And my "famous" pick your fave flavor
Ice Cream Mud Pies for the Birthday "kids" 
They buy the ingredients, I "assemble" ... 
Another eating party coming soon!

I'm so fortunate, so lucky, so blessed
in so many ways... I work on keeping my sadness
in check and in perspective, moment by moment

And so, another day, week, month. Another set of challenges beyond challenge. I sometimes have chest pains from the stress. I will yell at the Universe later today, tonight, tomorrow, during my steroid crash... but wait... I don't have much time to focus on me right now. Perhaps that's a "good thing"...

May your life bring you joy, happiness, dreams fulfilled, and the strength to confront your "challenges". Thank you for reading and caring about my life and my medical and emotional roller coaster.



Friday, March 29, 2019

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 :)) 




Tuesday, March 19, 2019

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 :))


Saturday, March 9, 2019

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.




Tuesday, February 19, 2019

Go Steroids, Velcade, Cytoxan! Some Good News for a Change

Hello 2.19.19

I refer to my crazy Mondays now as "Medication Madness Monday", so this post comes a day after my weekly cocktail of 40mg of Dex steroids, Velcade shot, and 8 Cytoxan-Cyclophosphamide pills, and my February monthly status Dr appointment. I began this post around midnight last night, still hyped up and jolly on steroids, and planned to continue a lively, positive, good news update later today, but sadly today went from what should have been a quick Dr appt to an all day traffic nightmare...


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Yes, the day, and this post update, is a wash, as it became a caregiving day for my hubby with Dr appts, etc, for him. We got caught up in a horrible freeway backup, accident, fatality situation, that caused a nightmare traffic jam on our local freeways and local streets. After inching along for hours, I finally decided to make a U turn (like so many others), as our route was going nowhere at 2 miles an hour... I was parched, hungry and felt lousier and lousier by the moment, as Tuesday begins my Dex and overall medication crash. Luckily, earlier, I went with my myeloma intuition, and didn't eat or drink anything before leaving the house- (not healthy, but necessary). As I've mentioned so many times here, and told so many stories of "near misses", I do not eat, or drink before I go anywhere, so there's little chance of a "biological emergency" on the freeway. And wow, was today a perfect example of why I do that! As we sat in sloth style crawling traffic, I couldn't help but think of all the potential emergencies people could be having in their cars, stuck on the freeway and side streets. Just awful. Been there, done that with way too many "volcanic biological emergencies", over the 9 years of myeloma treatment. I never want to experience an angry, desperate GI system while stuck in a car ever again!

So after crawling along getting no where, breathing car exhaust fumes, and fearing I might run out of gas, I realized we could be caught in this nightmare for hours. Thankfully, that U turn brought me by a gas station. While there, I also considered using the restroom, but really didn't want to, as I avoid public germy places as much as I can. Ironically, (and I was glad), it was "out of service". Clear message, right, to Stay out! But also not good to hold my pee, as my Dr told me Cytoxan-Cyclophosphamide is hard on the bladder and kidneys.... so here I am not hydrating and not peeing. Just great for my poor body on day 2 of treatment medications, when they're revving up the most!

Meanwhile the traffic was only getting worse, as the late afternoon, evening commute had begun, so I just gave up trying to get home, and decided we'd go out to eat while the traffic chaos died down. The irony was we were right across the street from where we had our wedding reception, a zillion years ago, so that became our dinner destination. Ah, this life and all it's crazy twists and turns! So here I am trying to update this post at 9:30pm, going on 10pm going on 11pm, going on 12am... exhausted mentally and physically, so this will have to suffice for my 2.19.19 update, which was going to be newsy and funny. But I'm just too beat up to upload screenshots of my recent labs, and write in detail about my news. Crazy what a difference a day makes with Dex! Yesterday I was so peppy and energized and funny... today... drained, frustrated, and not so funny and fun anymore, as the sad circumstances of my husband's situation, and the impact on him, me, and us as a couple weighs heavy on me today...



Here are the headlines of what I had planned to show and tell you:

IGA = 2000 in Nov, now 1230 (normal 70-400)
M Protein = 2.19 in Nov, now 1.01 (normal = 0)
Beta2Microgloblin = 2.9 in Sept, now 2.1 (normal below 1.8)
Light Chains = subnormal
CBCs not bad, Not Neutropenic!
Body organ stats good considering 9 years of chemo battering!- this amazes me!

Also wanted to mention a Weird change of my Velcade shot today. Normally I receive 1 injection for 1.59mg/ml, but today my dose came as 2 shots. At first I was alarmed and thought I was getting a double dose, but the nurse checked and rechecked, and we confirmed that it was the same dose, but the pharmacy sent it as 2 injections, or 2 needle sticks. Hmmmm, never had this offered like this before. We had another nurse come over for consultation too, and everyone said it can be done either way. Turns out the concern is injecting too much SubQ into one area. So it is often divided up into 2 spots. For those of you familiar with Velcade, what is your experience with injections?

Up to now, I have the injections in my lower stomach, or my "jelly-belly" as I affectionately call that area :)) We alternate L and R sides each week, but it has only been one injection stick, not 2. The nurses often assume in the arm, but I have never done it there. So far, I do not have any new side effects from 2 sticks, perhaps a little less irritation, as was suggested by the nurses. Just checked. Yep, 2 red spots, not 1. But I don't have any itching or pain... yet... When I began Velcade, some injection sites actually turned to bruises. Some super itchy. Some painful. So far, most importantly, very little Neuropathy! Thank goodness for that gift!



Life continues to be a crazy roller coaster with my hubby's Alzheimer's decline... decisions, decisions... ugh... so tragic on all levels...

Rain, Rain, Rain = Muck, Muck, Muck here... cold, cold, cold... done with Winter, thank you!

And I can't help thinking... What's next after this triplet, when I become refractory to it... when myeloma outsmarts the chemicals trying to outsmart myeloma... next up clinical trials??? Clinical Trials Scare Me... as you know, I like some semblance of control over dosage, and you can't chose your dose in Trials! Well, one day at a time, one challenge at a time, one crazy life adventure at a time. Cheers to surviving all I have, on so many levels, and you to, for all you have dealt with in your lives. So many challenges, on so many levels for everyone! But again, I'm always always so very very grateful for my amazing Insurance, my family, friends, and all the good that has been in my life!


Here's a walk, rather a read, down memory lane of my posts this time (February), of previous years:

https://juliesmyelomamoments.blogspot.com/2018/02/myeloma-on-move.html

https://juliesmyelomamoments.blogspot.com/2017/02/stop-this-start-that-moving-on.html

https://juliesmyelomamoments.blogspot.com/2016/02/sick-so-sick-big-fever-stupid-immune.html

https://juliesmyelomamoments.blogspot.com/2015/02/the-new-new-new-new-new-unwanted-normal.html

https://juliesmyelomamoments.blogspot.com/2014/02/low-dose-treatment-reality-check.html

https://juliesmyelomamoments.blogspot.com/2013/02/my-life-in-ocd-antibacterialized-bubble.html

https://juliesmyelomamoments.blogspot.com/2012/02/remission-back-in-saddle-again.html

https://juliesmyelomamoments.blogspot.com/2011/02/no-new-news-is-good-news.html

Such an evolution of self, and this blog! Yet, how much the same things are!




My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!


What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)

Infections

Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.