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

Thursday, October 18, 2018

Cruisn with Myeloma... What A Story!

10.18.18

Hello loyal readers, followers and new finders! Have I got a story for you!!...

But first Dr appointments, then I will finish this story later today, and update you with my treatment status and plan, Radiation consult update, and current Myeloma stats.

I'm baaaaack, and here's the crazy story:

So I Took a BBBBBBig Risk and Went On A Cruise last week! Seriously, a Cruise! A Big Ship with lots and lots of people and Coooties! Something I "swore I would Never Do", since my Myeloma diagnosis... but back in March of this year, our daughter convinced me, after much pleading and explaining, that doing this was truly a Bucket List Trip for All of Us, and "we  just have to do it"!!!. She loves to travel and attend music festivals, loves sharing her adventures with us, wishing we could somehow join her. With my erratic, unpredictable myeloma complications and status and my husband's rapidly declining health (that's a whole nother blog.... ), I decided to let her book this trip for us, with of course, travel insurance, and let life decide if it was to be...


Sadly, there's just so much we DON'T do any more, due to our complicated bad health. I feel life is just passing me by, and I am spending what time I have left on this earth, processing all the things I used to do, and feeling sad we are so limited in what little we can do now...

This year has been pretty challenging with all the bad bone news from my Pet, CT Scan. I try to process what's going on inside me physiologically, but it's hard to visualize and connect with the extensive bone damage myeloma has done to me. But when I was hit in July with the broken rib reality, the outrageous bad reaction to Zometa, and the EXTREME bone, muscle, nerve, pain I had July, Aug, Sept and beginning of Oct, I decided, if I can manage to feel ok, I must live life while I can. We've missed so many events with family and friends due to both our extreme pain situations, complicated diagnoses, not to mention all my complications and side effects from myeloma chemo treatments.... As I write this, it's just so hard to wrap my head around how "sick" I really am... But I am, and so is my husband, and we just don't have much of a life, beyond medical challenges...

Sooooo.... Last week, I had my Velcade chemo shot on Monday, I packed us up on Tuesday, and Wednesday, we boarded the Cruise Ship!!!, me, armed with 5 days of Zarxio (Neupogen) WBC building injections, plenty of pain meds for both of us, and lots of colorful face masks :)) I seriously made the decision to go on Tuesday, the day before the ship left on Wednesday! My intense, incessant bone pain from July forward, my husband's declining health, and the RISK for a Cancer Patient with a Compromised Immune system is down right crazy to do this,.... But I decided, and we did it!

https://www.groovecruise.com/en
You won't believe what type of Cruise this is!

My Groovy Cruisers
that got me into this insane adventure!

Stylin with my trendy face mask!

LOL! Just look at those ridiculously HIGH 
WBCs from 5 days of Zarxio! I didn't know how high at the time,
but saw these results this past Monday, after returning
from the cruise! 

Way to keep healthy on a Cruise
Thank you Zarxio for pumping up my Immune System!
So far so good, I'm feeling exhausted, but ok...


And look at that ANC!
Power on immune system!


So if you can imagine, this Cruise is a like a combination of Halloween, New Year's Eve and College Dorm Life! I can't even describe the all the shenanigans going on. There's music and dancing all day, all night. There's a dress up theme during the day, and another for night. The level of activity and energy is electrifying. Everyone is happy, playful and fun. We of course didn't partake in most of the activities, but I made sure to spend as much time as possible outside, in the fresh air. Which brings me to remember to mention, that Hurricane Sergio caused NCL to reroute the ship from Cabo to Ensanada. I didn't really care about that, as my hubby and I weren't planning to disembark anyway.

We spent time eating, and meeting very interesting people. We spent time on the top deck enjoying the sun and fun. Our daughter had posted our "story"on the cruise website, so we were quite the "celebrities", especially because of my crazy cancer situation, and also my hubby's "old age". I haven't mentioned it here, as this blog is focused on my Myeloma journey, but over time, his medical issues of Spinal Stenosis, pain and mobility limitations from blood clots from a 1983 ski accident, and over the last several years, Alzheimer's has completely changed our lives. As complicated as my situation is, I have become his mental navigator and caregiver... It's all so complicated now, with both of us with serious diagnoses. So crazy for two people who were so incredibly healthy and active all our lives, on every level....  So you can see why our daughter saw this trip as a Bucket List item, that was becoming a "now or never" idea...



See my shirt... It says:
"If Not Now... When" :))



Meet my buddy John Beaver!
It was serendipitous that we were on the same deck,
as one day we passed in hall, started chatting and discovered
we were both cancer survivors! 
Turns out he was one of the DJ's on the ship, and 
he's also an animal lover like me, and a professional zoologist! 
We went to one of his performances outside on the back deck
and I danced my heart out, as I haven't done in years and years!
I think I'm still feeling it now...
Hard to tell what is bone pain, muscle pain, nerve pain, cancer pain
or dance pains!!!

After we danced our toes off!
I'll post some videos asap! 


More pictures and videos to come!!!

*****************

And "back" to reality...
I met with the Radiology Oncologist yesterday and discussed the pros and cons of Radiation on these lovely tumors, or are they plasmacytomas, or are they lytic lesions, or holes... I still don't get all the interchangeable terminology of Myeloma eating up our bones.... 

Can you find the tumor on my Sacrum??

And look at those lovely spots on my spine!


TO BE CONTINUED.... 
SO MUCH MORE TO TELL...






Monday, October 8, 2018

Chemo in the Belly! Hello Vintage Velcade

10.8.18
Hello October!


I'm headed to the Chemo Lab soon for my 3rd Velcade shot. So far, so good THIS TIME! Some Neuropathy, but nothing crazy like the "Frankenstein affect" I had from Melphalan back in July 2010, as prep for my Stem Cell Transplant.
https://juliesmyelomamoments.blogspot.com/2010/09/
https://juliesmyelomamoments.blogspot.com/2010/10/ 

My first Velcade shot this time around, I had a little swelling and redness at the injection site, the 2nd shot, the same. This is NOTHING at all like my brief experience back in February, March 2017 when paired with Darzalex! So far Velcade is my friend, as I am not experiencing outrageous side effects. And if you've followed my blog for a while, or know me personally, you know my philosophy of "Less is More"... as yes, I asked my Dr to start me off LOW dose this time, and build from there if necessary. See, my system is just so stikin sensitive to everything, then it adjusts, and shabam! Me and chemicals do fine :))

Back in 2017, we had originally tried the Darzalex, Velcade, Dex triplet combo, but then I wound up with CRAZY, on fire skin and nerve pain. It was like having a skin fever, without the actual fever, and cats scratching my skin and nerves 24 7. Was just awful. Whether it was the first several Darza infusions, or the Velcade itself, or the combo of the 2 fighting each other, I don't know, but I DITCHED that FAST as it was so painful and so intense. Here's what happened back then! https://juliesmyelomamoments.blogspot.com/2017/03/ . That's when we switched to Pomalyst, and the rest is history from March 2017 to September 2018. I'm proud that my body was strong enough to utilize the powers of Darza and Pom for so long, but this seems to be my trend of doing ok for a year plus, before becoming Refractory to each treatment cocktail.

Gotta go.....
TO BE CONTINUED.... :))

I'll post my current Labs when I return, and update you about my crazy BONE PAIN situation, and upcoming Radiation appointment... 

Yep, I have officially joined the 
"Blue Placard Club"
Pain is No Joke!




Friday, September 28, 2018

Feeling Like a Cancer Patient

Hello 9.28.18 and Bye Bye to September...

Thoughts, Reflections, Scans, Labs, Chemo Changes...

My 8+ years of  posts...
Sometimes I'm funny, sometimes serious, sometimes factual, sometimes raw, sometimes poetic, most of the time unfiltered, direct, honest... I've always been optimistic, positive, forward thinking and hopeful, as I've worked hard to create a life with minimal conflict and drama. Insight, awareness and happiness, my goal for me and those in my life. Having myeloma cancer did not change or create these aspects of me :))

My life...
I've laughed and cried at my myeloma journey, incredulous it happened to me. It's all so surreal. Always. Twilight Zone. I've journaled my treatments and side effect adventures here for over 8 years! I've shared my myeloma story with the you, the world. Yet, all the while, always having a hard time relating, connecting cancer to Me and my life. Seems like I'm telling details and events of someone else's life. Telling a compelling story, and I'm the main "character". No matter my challenges, I struggle with being a sickie. I just hate feeling unwell and unable. Pain steals me from me. I keep thinking everything is temporary, and it will all be better soon, and I will be "back to my normal", in no time. I'm not a fan of this "new normal"... especially the crazy bone pain...

My diagnosis:
I have to say the words INCURABLE CANCER, as that's my reality. Continual, constant treatments. I show up, I participate, I'm treated. For days afterwards, the IV or injection bruise reminds me. Yet I feel like a "visitor" at the chemo lab. I feel like I should be "helping" everyone, be part of the staff, not a patient. Intellectually, medically I know Myeloma is my life, but I just can't fully connect the dots. When I wake up on full powered steroid-boosting days, I am energized, hopeful, positive, humorous. I am partially back to my ol me. Thankfully, Myeloma is suppressed for a day or 2. I'm faked in to feeling ok, thinking I'll be ok, thinking the powerful chemo meds are pummeling the stealth myeloma cells "forever", thinking one day, some treatment will magically make me ok. I'm temporarily distracted, dazzled by the pretend healing, anti inflammatory relief I get from Dex steroids... Then I crash, then the pain, then the extreme fatigue, then the GI side effects and now, this intense unbearable crazy-making night bone pains, rein me in, forcing me to acknowledge my diagnosis and body deterioration realities... forcing me to know I am a "real" cancer patient with REAL side effects, not winning this never-ending battle...
My Reality:
I've often thought that if I "looked" more like the world's stereotype of a cancer patient- no hair, pale, thin, gaunt, physically disabled in some way,... my story would be more believable, to me and others. Because it is human nature to assess and judge, it's difficult for those that don't know me, heck, even for those that do know me...  to understand how "sick" I really am INSIDE. How I struggle to just Be, everyday. I see myself in other's eyes when I tell my tale. There's that look of disbelief, that "surrrrre, um, ya, okaaayyy lady... sure you are..., you look so good..." But these last few months, where PAIN has been my ever increasing daily visitor, I am feeling more and more like a cancer patient, like a sick person, like a disabled person, like someone much older than me, like someone so UNlike me.., like someone very unwell. I am feeling so beat up. I have a sadness I haven't had before.


On being continually "sick" for a LONG time:
I've had Myeloma for most likely over 9 years, as I'm certain I had "smoldering myeloma" a year or more prior to my actual Dec 30, 2009 diagnosis. Now, all the treatments, side effects, internal cellular fights are catching up with me, really wearing on me and my physiology. Maybe my body is increasingly losing the battle, and I feel it more? Maybe everything is finally taking it's toll. Maybe all the damage I didn't think was there, is there, and I feel it more than I did before. Maybe I am not in denial anymore, because PAIN will no longer allow me to deny my serious situation. I'm just feeling beat up. Pain is a powerful reality check.

See, for so many years, GI symptoms and those type of side effects dominated my Myeloma journey and challenges. I felt "sick"a lot, but in a different way then now. The ever present Myeloma fatigue is a constant, and makes me feel like a can't-do-a-thing-sickie. But then weekly Steroids to the rescue!, and I have a snippet of "normalcy", which always caused me to question my terminal cancerous status. I had a semblance of my normalcy for about 36-48 hours.

But now, I can't escape my reality when PAIN consumes me, lights me on fire internally, mostly in the quiet of the night, bringing me to an insanity, a madness I've never known. It's like a searing lava flow, creeping in, consuming my being. Deep inside. Burning, electrifying my left side. Hello bone pain reality... my denial no longer buried. This forces me to accept I have a lot of myeloma bone damage, that I never thought or knew I had. Forces me to accept what I still can't comprehend on my Pet Scan and MRI. When describing Myeloma to well people, I used to flippantly say, "yes, eventually myeloma eats us up from the inside out, destroying our bones", but I didn't "relate" to it.... Now, I've joined the Bone Damage Club, and I can't pretend that I'm ok. I'm not. Pain reminds me daily. I'm fragile now in a way that has completely changed my view of myself. I'm breakable. I'm no longer toughy, carefree, cowgirl Julie.

How I know:
I had my first tell tale PET CT Scan in April of this year. I was shocked to find out about all my Holes, Lytic Lesions, Tumors, Plasmacytomas...... I officially have bone damage. The term "Innumerable" was used repeatedly. Myeloma has officially eaten away at my skeleton. I have all this damage I can't even wrap my head around. WHAT THE HECK IS THE DIFFERENCE BETWEEN ALL these types of bone damage? Myeloma conversations involve using these words interchangeably and I don't get if they're the same or different! Do I have Holes or Tumors!!! Or both? What I do know is, myeloma has eaten away at me from skull thru my legs!

The worst:
Then came my AWFUL HORRIBLE REACTION TO ZOMETA in July, at the same time I had a BROKEN RIB... truly, each day, week, month now, something new happens. This kid who used to be so drama free, is now a Drama Queen...


July was awful, full of pain... but that pain morphed, and never fully went away. It subsided, it changed, and it moved into my lower Left side hindquarters, butt, hip, legs. DEEP INSIDE THE BONES, or the tumors, lesions, or whichever pinched the nerves, muscles.... IT IS SO UNBEARABLE at night. When I sit, when I lay down. Like Right now, when I sit for long periods, writing, reading, researching. But I can't be on the move 24 7! So much of life is sitting, reading, looking, reclining, etc. I get up. I sit down. I move around. I pace. I do things. But at night, I want to sleep! I want to get cozy and relax. My body doesn't let me .... What the heck is going on... The pain is debilitating physically and emotionally. I have never been so humbled, I have never been so close to a breaking point... I am desperate for relief... I try different combination of meds every night the searing, burning, electrifying, all consuming pain invades.

Reality on paper:
So I had a MRI on the specific area I mentioned to my Dr.
Here's the summary of the results:


Here's my PET CT Scan results from April:



So I will be starting Radiation in October!
Me, Radiation? Yep. I'm a Cancer Patient, with excruciating Bone Pain. I'll be starting Radiation. What will Radiation do? What does it do to all the Lesions, Tumors, Holes? How does it help with Pain? Will it untweak the pinched nerves? I have so many questions. I feel more like a cancer patient now... Hello, Radiation! Will I get sick? Will I lose my hair? What does Radiation do for Myeloma... I'm desperate for relief... I'll start reading and researching my new trail ride...


And to top all that off... 
Darzalex, Pomalyst, Dex steroids has finally ceased being effective after over 18 months. Yes, officially "Refractory". But 18 months is a pretty good run, so I'm not super upset or surprised. As I write all the time, I'm not brave any more, and I don't want to begin Clinical Trials yet, so I suggested going backwards, and trying some "standard" treatments I haven't tried before. So this past Monday, I received a LOW DOSE Velcade shot, and will possibly add Cytoxan pills in October. I'm not sure I will do it, as the first and only Cytoxan IV infusion I had June 2010, as part of the prep for my July 2010 stem cell transplant, I wound up SICK from it... wwwwaaaaahhhh waaaah you say. Poor baby. Yes, upper GI sickness is my most feared side effect. So if Cytoxan pills will make me sick, forget it... on to something else. Many of you reading this, must be laughing and shaking your head, but at this time in my life and treatment, having some QUALITY OF LIFE, is what is most important to me. I just won't do treatments that make me feel yucky and gross all the time...

I did have a few Velcade shots back before Pomalyst, but those were "regular" dose, and I had crazy horrible awful skin, nerve pain, and said NO Way to that back then! I recall they wanted me to do Velcade 2x per week!!! I said NO! Who knows if painful skin/nerve pain was the Darzalex or the Velcade, or the higher dose, but I just want to avoid awful side effects, if possible. Yes I know, I'm sounding like a whining kid, and I do know that for chemotherapy to be effective, it does have to be "strong", but I've always preferred to start low, and move up, rather than start high, suffer acute side effects, then reduce the dosage, as seems to be the medical thinking. I have a very sensitive system at first, then after a while, I actually do quite well with "chemicals" lol.

Here's my latest labs:







Yep, everything is up and even my M Protein is back and showing it's lousy self. Probably had been creeping up, but the effects of Darzalex must have hidden it as it moved up from "not detected", not visible, to 1.58 in this one lab result.

Well this post is long and all over the place.. I just wrote my thoughts, unfiltered, sad, frustrated. Sorry, I'm just kinda pissed at my body right now, frustrated with dealing with all this for almost 9 official years, and I just don't do well with pain, but I also don't want to kill off my Kidneys and Liver with mega doses of Pain meds or super strong ones at that. I'm just so sick of being sick all the time. I have been doing "adult strength" Tylenol and Advil lol. My Dr wrote me a RX for a stronger med then the OTCs, Ultram/Tramadol, but I haven't filled it yet.

I'm eating a bowl of ice cream while I writing lol. It's still hot here, and I'm so tired of focusing on doing all the right things, all the time, and it doesn't seem to make a difference. Well maybe it does, as I'm still alive.

I'll end here, but to summarize, Darzlex, Pomalyst Dex bit the dust, and it's on to Velcade shots, Cytoxan pills (maybe) and still 40mg Dex steroids. And Radiation! I'll be starting Radiation in October. Wow! Radiation. Any suggestions for treatments allowing for "quality of life", are welcomed. And at this time, NO, I do not want to do another stem cell transplant or the CAR T-cell. Yes I want to live. Yes I know I have to treat myeloma seriously. Yes I know I have an aggressive, high risk form of myeloma, but NO, I don't want to suffer any more than I have to, and live what ever time I have left.... in constant side-effect PAIN, in the bathroom or on the couch... that time will come, when I have no other options...

Thank you for reading my life. Your comments inspire me to keep writing. You give me much needed perspective, options, ideas. Thank you!



Tuesday, September 18, 2018

Same (Painful) Story, Different Day...

Hello 9.18.18

Seems like this month, all my important events and status reports fall just before or after my regular "On the 8's" post dates.

I expect "Big" news on Monday Sept 24, my next Dr appt and Darzalex infusion day... as I should know the results of tomorrow's MRI, and I suspect my IGA continues to climb,  even though I've gone back to doing Darza every other week. I can just "feel" when myeloma is "winning"... Pain is just such an awful reality reminder...

But for now, until I know What's Really Going On... here's my mini update-

Pain is my nightly visitor now. When the lovely weekly Dex steroids waned yesterday, as I suspected,... the evil, excruciating, vibrating, deep deep deep leg bone nerve muscle pain crept back in. Seriously! Just like the ocean tide. Rolls in, rolls out. Creeps in, creeps out... It's crazy how predictable this has become now. Never had anything like this in my life! Imagine, at the end of your day, when you just want to RELAX and chill, read a book, watch TV or whatever your evening relaxation is... this maddening, incessant, deep ache invades, not allowing you to sit, lay down, relax. It's almost like a "jack-hammer" drilling away, up and down my mid, and lower left side. And all this really began after my severe reaction to my first and ONLY Zometa infusion... hmmmm...connection??

So every night now, I begin my new ritual of OTC pain meds when I feel the ache cramping my leg, and left side. I start with low dose, then graduate up to a higher dose. If that doesn't relieve the ever increasing pain, I add a muscle relaxant pill. A bit later I take my nightly Pomalyst pill, then as the pain pounds more deeply, I add another pain pill, then I slather on Bengay, or other supposed pain relieving cream. Lately, I've even tossed in one 4mg Dex steroid pill, hoping it's magical anti inflammatory properties kick in, and give me relief. In between all this, I begin pacing, walking, shaking out, stretching out, pounding my left leg, in hope of relief and sleep. Finally, at some point, so exhausted, so beat up, so frustrated, so sad, so overwhelmed with my "realities"... I sleep. Eventually, at some time, early morning, the ache disappears, and I wake up as if this insanity never happened, with just a tiny dull ache remaining, as "night's calling card". As I write this, I have a smirk on my face of how crazy this is! I wish there were bruises on my leg to make this "visually real", as it's just so unbelievable!.


Until next time, here's some of my favorite postcard sayings ~

I don't Live in Fear,
but I Have Fears

Yes, I'm always analyzing what is
and what can be

My life is so very different than I thought it would be
But I am grateful to still be here

Most "hate" the "Dex-affect"
But I sure love it's uplifting, anti inflammatory properties!

Just when I think I can't,
I do!

Ah, yes... 
I wouldn't go back, but I would like a cancer free body

Me, every other week on Darzalex days

Every day a new lesson,
a new challenge,
new solutions to accept

Breathing, yes, deep breathing is so important
and cleansing


Thank you for checking in and following my Myeloma journey. It's never ending, full of surprises and unwanted realities, and keeps me thinking about life 24 7. 

May your life be joyful, fulfilling and you are doing what you can to make the most of your precious time on this beautiful earth!




Sunday, September 16, 2018

Managing Pain is a Pain in The *** ... Myeloma, you're Sending Me Over the Edge...

9.16.18

So I was going to post the other day, then the other day, and the other day, but Myeloma stole my life. I wanted to share my amazing CBC lab results from 9.9.18, the day before my Darzalex infusion on 9.10.18, but then life just moved forward and this craaaaaazy leg pain totally sabotaged me again.

I'm seeing a pattern now of this mind bending, maddening, intense, unrelenting bone, nerve, muscle pain. It invades when my weekly Dex steroids fade. For me, my 20mg or 40mg Dex steroids relieve my pain and inflammation for about 36-48 hours. Then this deep, resonating, incessant pain returns to my Left side rear, upper leg and calf, always at night, when I want to sit and relax or sleep. I feel it gradually coming on, as I slow down for the day, then it totally revvs up when I sit or lay down to sleep. Then it becomes totally unbearable at night from around 10pm to 2:30ish am. I can't even put in to words how awful it is... Guess I am finally understanding what most Myeloma patients experience with unrelenting internal body pain from myeloma's ravages. Sciatica is the closest I've come to a description of it, but it's so much deeper... but I've never had a "sciatica problem" before... so what do I know??


It's so hard to describe this excruciating pain as it's so deep inside my body, creeping in slowly and stealing my nights. I am only able to write this blog now, as I took steroids early this morning, so sitting is not driving me mad. The pain is not like if someone kicked you in the shin, or you fell off a bike or horse and had skin road rash. This bone, nerve, muscle pain is so deep. Deep and resonating and reverberating. It hurts and throbs. It radiates up and down my lower extremities. It's like internal drilling, but muffled. Does that make sense? Here's how it happens and what I do to try and alleviate it...

At first I thought it was just a passing, temporary event, once in a while thing. But looking back now, I truly believe it all began after the Zometa infusion disaster (see all my July 2018 posts!) July was just awful, awful with my broken/fractured rib craziness. Then my severe unheard of extreme sickness reaction to my first disasterous Zometa infusion (see my July 2018 posts :)  But I finally felt better in August, thought this ridiculousness was over. WRONG! I began to see the pattern of pain, when the steroids wore off. See, Dex saves me for about 2 days. Then when I begin crash, and the power of anti inflammatory steroids wear off... I'm done for! Previously, I had a pretty good tolerance for pain, but not any more, or what I experience now with Myeloma, is something from another Universe... this is just intolerable...

So for the last several nights, I've been in misery. When I feel it coming on, I start with low dose kid's Advil or Tylenol. Then if that doesn't help, I add the adult version. When that doesn't help, I add another one. Yes this is over the course of a few hours. Then I add Flexeril, a muscle relaxant, then I slather myself in Bengay, as that does seem to help a bit, and the lovely Wintergreen scent helps me breathe deeply, as by this time, the intensity of pain takes my breath away.

Between all this, I am trying to relax on the couch or recliner. Can't. The pain forces me to get up and walk, stretch, shake out my leg vigorously, walk, stamp my feet, etc, anything that can send shock waves into that area! But as I'm doing that, I worry I'm taking the chance of breaking/fracturing something. I worry I'll crack something with everything I do to try to alleviate the pain. Ugh, it's so incredibly frustrating not knowing what the heck is going on inside of me. But I have a MRI scheduled for this Wed Sept 19, to hopefully shed light on this disaster.

When I try to go to sleep, this PAIN has another plan for me. The internal resonating, vibrating, throbbing is just relentless. I try deep breathing to "will it away". I lay there thinking this just can't be happening. This can't be for real. When I can't stand it any longer and I get up, sit up, get my wits about myself, as by this time, I'm kinda dizzy. Then I begin walking, pacing, stamping my legs. I take another Tylenol or Advil. I slather on more Bengay. I'm soooooooooo tired I can't stand it. Literally, I don't want to stand, I don't want to walk, I just want to relax, to sleep. But my body won't allow it... my mind goes desperate places at this time... how long will this last, is the beginning of my "end". Is this how Myeloma patients die?

I decided this time to take 1 steroid pill, as I was due for my weekly dose today or tomorrow anyway. I never take Dex at night, but I thought, I just don't know what else to do, and it's a magical anti inflammatory. My plan then was to take the remaining pills in the morning...


Finally, I fell asleep. Whether it was from all the meds finally kicking in, the 1 steroid pill, or from exhaustion, I don't know. But I finally slept. I awoke around 7am and took the remaining 4 pills for a total of 20mg (I take the 40mg on Darza treatment days), and went back to sleep. INCREDIBLY I slept until around 11ish and couldn't believe the RELIEF I felt! You know that feeling when you find that perfect spot on your pillow and bed... well I had that feeling... and pain free. I felt 30 years younger. So AMAZING. I just laid there, totally amazed and savoring the pain free moment!

All this forces me to come to terms with my new painful life. I had a difficult day emotionally. Many forced realities sinking in. Wondering where all this is going... wondering if now, bone pain, body pain, life pain is now my agenda. I've been sad all day, and angry. Frustrated with so much. Treatment and challenges for 9 years is a long time. Can you even imagine being "sick" for 9 years. Yes I know there are hundreds of myeloma patients out there who have many more years on me, an that's so incredibly amazing. Everyone's journey is different. Everyone handles illness, side effects and pain differently. Myeloma presents itself so differently for everyone. My early journey was super GI challenging for years and years. Now the volcanic diarrhea is gone, and in place of it, I have unrelenting pain. Where is all this going... would I want to look into a magical crystal ball, and see my future??? Would you??

Today I spent time reading about side effects from all my medications. Yes, Darzalex, Pomalyst, Acyclovir, all cause muscular, nerve and bone pain. AND OF COURSE MY NEMESIS ZOMETA! So what am I to do? I have to treat myeloma, and all medications have side effects. If I lower doses, myeloma wins. If I stop taking these, myeloma wins. If I switch, what do I switch to? I'm running out of options... except for a few and then it's clinical trials, which scare the %@#! out of me...

So I'll suck it up, and at my next appointment, I will ask for "adult, cancer patient" pain medication. More side effects... ugh... Can I just go back to the 1990s?

Here's my original reason I was going to post last week :)) With all this pain, and craziness, I can't believe these CBC results! Maybe PAIN CURES MYELOMA?? ahahhaaa

OMG can you believe these results!
Haven't had "normal" CBCs since maybe 2007!!!

And whoohoo! I'm far from my
usual Neutropenic!!

Do you think they mixed my blood with someone else's??? LOL

Hoping your life is peaceful, fulfilling, fun, joyous and pain free!
More updates to come, as pain is just around the corner as Dex wears off, and so is my MRI on Wed 9/19, more labs probably that same day, and then Dr appointment and Darza treatment day on Mon Sept 24. So in a week I'll know the results of the MRI... wow... I wonder... just wonder WHAT THE HECK IT WILL SHOW... 

Thanks for reading, commenting and caring about my crazy myeloma journey. xoxo



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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.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.