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!