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!

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!

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

Septembers To Remember

9.8.18

So not a whole lot to report since my last post, except thankfully most of my excruciating pain has ebbed away, however I do still have strange twinges in my lower left side and legs, but not every night like last month. I just can't identify if the pain is bone, muscle, nerve. It's so deep, radiating and persistent. So different then a skin-cut type of pain, or pain from banging into something. Perhaps I can "blame" Zometa for it, and my horrific reaction back in July! I'm looking forward to what my upcoming MRI will show.

Next Darzalex infusion is this coming Monday, Sept 10. The end of the month will be 2 months back on the every other week Darza schedule. Will be interesting to see what my labs show...

Thought it would be interesting to look back on my September posts, and see where I was at this time each year, medically and psychologically. I have linked them below for you to browse through. I can't believe Myeloma has been my life for so long now. So much has changed, yet so much is similar...
This time 9 years ago, Myeloma was raging inside of me, but I had no idea...


9.7.17
https://juliesmyelomamoments.blogspot.com/2017/09/waiting-for-news-always-waiting-and.html

9.6.16
https://juliesmyelomamoments.blogspot.com/2016/09/some-days-imodium-some-days-prunes.html

9.5.15
https://juliesmyelomamoments.blogspot.com/2015/09/vicarious-travels.html

9.1.14
https://juliesmyelomamoments.blogspot.com/2014/09/hello-september-please-be-better-than.html

9.14.13
https://juliesmyelomamoments.blogspot.com/2013/09/another-new-normal-confessions.html

9.20.13
https://juliesmyelomamoments.blogspot.com/2013/09/how-life-can-change-in-15-hours.html

9.25.12
https://juliesmyelomamoments.blogspot.com/2012/09/when-normal-becomes-abnormal.html

9.10.11
https://juliesmyelomamoments.blogspot.com/2011/09/time-for-reflections.html

9.9.10
https://juliesmyelomamoments.blogspot.com/2010/09/p-and-p-pain.html

Thanks for checking in, and following my myeloma life story!