Zometa Backlash, I Can't Handle the Pain... Sometimes Myeloma Wins

Hello Friday The 13th!

7.13.18 - Friday the 13th.
It's so ironic, and so fitting that I've had awful, pain beyond painful pain, these last few days, as 8 years ago this month, I was at City of Hope Hospital, experiencing all the yucky Melphalan chemo, Stem Cell Transplant Crash side effects. I was in the middle of the process, with my CBCs near nothing, feverish, trying desperately to survive and heal, fighting to become me again, desperate to get from the hospital to home.

So how fitting I had my first Zometa infusion on Tuesday, along with finding out about my Broken Rib. Of course my "friend" Dex Steroids propped me up that day, but it was all downhill from there these last few days, and I thought I would never come out of the pain, fever and awful physical suffering that I endured from early Wednesday through all of Thursday, and Thursday night, and into today Friday the 13th, and I suspect onward for several days...

I wrote the following thoughts early this morning, after 2 1/2 days of the worst bone, muscular, nerve, feverish pain I have experienced in a very long time, if ever? I don't know... I have so many incidences of pain to recall now, I can't remember...

%%%%%%%%%%%%%%%%%

True (unfiltered) Confessions of a Tired Cancer Warrior

Sitting on the edge of my bed at 2:30am weeping from the depths of my extreme pain, and frustration with my ongoing, never-to-end-battle with myeloma, I questioned whether I could keep doing this... The pain was just unbelievably excruciating...  

8 1/2 years is a long time, for me at least, to be sick and in a constant battle with my body.Too long (for me, who used to be so healthy), to be constantly challenged. I am fighting an internal monster that is much stronger and smarter than my body, and eventually always stronger than all the medications I have taken or will ever take. Myeloma will always mutate and outsmart any treatment I do. I will never have a break, never "remission" without continuous chemo. Never, Ever.

Simply put, if I want to live, I must treat, always, continually, non stop. This is my myeloma life sentence. Yet I am so tired fighting and feeling awful for most days of every week, except on steroid days. I am not as strong everyone thinks I am. I really am not. 

To be candid friends, most of my (facebook) posts, where you all so kindly compliment me on my smile, my energy, my fighting spirit, are the days I am all "Roided up", "Dexified" (as my dear myeloma cowgirl Jan calls it), on powerful medical steroids. Dexamethasone is a fun, crazy making medication the first day or 2. It energizes me, gives me fake euphoria, temporarily heals my body, mask's pain and even has strong myeloma killing properties. But as anyone who drinks or drugs knows, the crash crashes you, and the physical awfulness eventually overcomes, enveloping your body, your entire being for days. 

So I retreat into a yucky blah, for days, only to surface again for the same drill. Chemo, steroids, chemo, steroids, chemo, steroids, the next week, the next week, the next week, the next week, for my forever... Imagine knowing that EVERY WEEK OF YOUR LIFE, YOU WILL BE SICK from side effects. Every week you must plan your life around when to be sick, when to crash, when to feel awful. Every week for the rest of your life.

And the crazy irony is I'm "sick" from side effects of medications trying to make me "well". Yes, I have to be sick in an attempt to be well. I have to be sick, to survive, I have to be sick to stay ahead of myeloma. 

BUT WHAT SENT ME into the depths of "I CANT TAKE THIS ANYMORE", "I dont know if I can keep suffering like this any more, with literally no end in sight", was the horrible, unrelenting PAIN I experienced from Tueday"s new IV bone strengthener, Zometa infusion. 

I expected side effects and was mentally prepared for "something". But the something turned in to a fever as high as 102 -103, with unrelenting deep bone pain and body aches as I have never experienced. The depth of pain is truly indescribable. I couldn't get relief. Yes, I only do advil and tylenol, as I don't want to chance another side effect making me feel sick.

The unrelenting deep ache was overwhelming. I paced, I sat, I reclined, I stretched, I walked, I kneeled on the edge of my bed, awkwardly angled to try to sleep. I tried a heating pad, Solanpas, and those menthol minty ointments. I hydrated, but had little appetite. I cried and I cussed. The fever exaggerated the pain too. And at my depths, I looked skyward and cried, "Why me, Why?" "I can't do this anymore"... 

I'm really not strong friends. Well yes, mentally I am, but not physically. I can handle most things of a psychological nature, but each time I am confronted with REAL physical pain, I crumble. I don't know how most people who live with worse challenges than me, do it. And in comparison, my challenges are tiny, compared to others. I am not strong friends, and I am so very tired of this battle... 

I woke up today with less a fever, and without as much killer bone, nerve pain. I can breathe better, and I have a better perspective. I still feel like I was hit, rolled over by a giant tractor with huge spikes, but I am better. But I don't think I will do this medication again... I am not strong, I hate pain, and I hate suffering. 

Thank you for reading and being loyal blog followers! 

Live happy, live well, and make a difference somewhere, somehow, 

with someone or something as often as you can!

No Way! Can't Be Possible! I Have a Broken Rib!

7.10.18

What a day today! OMG! Getting my new bone strengthener Zometa IV, and then down to Urgent Care for consultation and Xrays on my painful Left side rib chest area, where I think I strained, sprained, tweaked, pulled, spasm-ed a muscle! I really didn't think I could have broken or fractured a bone from repressing, suppressing a sudden choke, cough, sneeze when driving home from my Darzalex infusion last Tuesday...

But what was I thinking this last week with all the crazy intense pain I endured for a week so far? Well I wasn't thinking smart, I was in denial. I really didn't believe, me cowgirl Julie, could "break" a bone. I always secretly think I'm Dominating myeloma, Not myeloma dominating me. Honestly, even with all my Myeloma damage, I really didn't think it was, or would be my story. Blame it on being "Blonde" or the "chemo fog" :))

Yes, just slam me with reality Xray results, as I do in fact have a Broken Bone! Never in all of my lifetime, broke anything. Even with all my outdoor sports, horse riding activities and events with my kids! Never ever had I broken a bone. Well I did, I broke, fractured a left rib with my crazy swallowing water the wrong way, then trying to suppress, repress the ensuing all-in-one choke, cough, sneeze, so I wouldn't blast water all over my car's dash! I broke my rib doing that! Seriously, laugh with me... I'm "dying laughing" here!!! :)) See my previous post for the ridiculous story. Next time, actually hopefully never another next time, but next time, I'll spit that water out all over whatever or whomever is near me :))

I shouldn't be surprised, right. I am riddled with Myeloma bone lesions, holes, holey tumors, lytic lesion tumors from my skull to my lower legs! Maybe to my toes? Holes to my toes. LOL. But the irony friends... Here I was at my very first Zometa IV treatment to Strengthen my bones, and then a few hours later, I find out I have bizarrely broken a bone, a rib! OMG, can my life get more ridiculous and ironic? Hello vicious myeloma complications.

Yep! The evidence!

When consulting with the Urgent Care Dr, I candidly tell my story as if I was talking about someone else. I still feel all this just couldn't be happening to me! He and others tell me they, "can't believe how positive, up-beat, fun, funny", and in his words" with amazing energy" I am, not to mention I "look "normal" lol. As he reviews my complex medical records, he says it just don't fit the person in front him. I Quickly Clarify that I took 20mg of Dexamethasone steroids much earlier, "so you're getting the extra animated, fully energized, "Dexified" Julie today". I even cheated and only took 20mg today, as all this muscle wasting, muscle pains and strains side effects are concerning me regarding the high dose 40mg Dex. Indeed, the external misrepresents the internal disaster...

Yes, last Tuesday, July 3, I was driving myself home from my Darzalex IV infusion, and swigged too much water in one gulp, causing me to choke, and need to cough, sneeze and spit out all at the same time, and unbeknownst to me, by suppressing this craziness, just to save my car dash I break a rib! Really this did happen. I broke a Rib, suppressing a monster choke! Never again, I've learned the lesson about my fragility.

Then for a few days, high on 40 Dex, I have fun on July 4th, feeling the pain buried under the false pretenses of steroids, but I was still able to carry on. Did I mention, I even scooped horse apples in the arena, took care of the other animals, did some watering of our yard, which involved pulling the hose around, took our 27+ year old Box Turtle to the Vet to have his nails and beak trimmed, and did a zillion other "normal" chores around our house, etc... Until suddenly, Dex, Advil, Tylenol and Flexeril wore off, and reality slammed me! Ouuuuchie... OMG I really do hurt, hence my Urgent Care visit today. Dex steroids dulled the pain, but Xrays don't lie! I have a stikn broken rib!

Yep, loaded up on "fix that rib supplies" tonight. My kind Dr asked me what kinds of meds he could prescribe to help me out, and mentioned all the "big dogs". I thanked him, but said no thanks, as I didn't want to add a new Rx to the mix, that may cause some new side effect. OTC meds have helped out to this point, with the lovely Wintergreen scented patches and good ol Bengay! Can you even imagine if I had an upper GI reax to strong pain meds, and my body wanted to vomit? OMG the pain in the ribs, muscles trying to retch! I don't even want to think about it!

So thanks to Dex steroids, I'll get thru the night, if I can ever get sleepy lol, and I see what tomorrow brings. Will be interesting to see what, if any, side effects I have from the Zometa... please "cancer angels", look out for me...

And thought you'd enjoy the shock and awe of my 21 days of Pomalyst invoice:

And I remember seeing the retail cost of my Darzalex infusion around the same amount. Thank you awesome Kaiser insurance for keeping me alive!

Super awesome chemo lab treats today :))

Just perfect for animal lover me!

Huge huge thank yous to my wonderful chemo nurses! 
Thank you for being a huge component to why I am still here :))
And huge thank yous to my wonderful Urgent Care Dr tonight.

One more point of gratefulness. I wound up seeing a bunch of my friends, colleagues, students, tonight, from my good ol college of employment of 35 years! Seemed more like a summer reunion today, tonight, then being at a medical clinic receiving jaw dropping news, say whaaat news!

Ok, Dex steroids, time to chill and let me go to bed... wonder what tomorrow and tomorrow will bring... May I please have a boring life for a while Myeloma...

Live happy, live well, and make a difference somewhere, somehow, 

with someone or something as often as you can!

Rib Pain Pain, Go Away... It's Zometa Day

7.10.18

That term... "No Pain, No Gain". Ha, Lie!! For me, pain is absolutely debilitating physically and mentally. No "gain" for me. Pain causes me to "rethink" my life when I am so incredibly miserable. I know pain has a biological, physiological purpose, to alert us there's something wrong, something going on... but geezzz, can't there be an "off" switch for it, once we get the message.

I remember all the pains I had from FUN things I used to be able to do. Outdoor sports, horses, playing with my kids, family trips, animals, etc. Muscular pain from that was annoying, and yes painful, but it has a positive cause. There is not positive purpose, except the physiological awareness-alarm, to this awful, take my breath away pain I've had since steroids wore off last Thursday, July 5th, my 8th SCT anniversay.

Here's what happened:

You can see from my previous post, I managed to have a fun 4th of July, of course because of DEX STEROIDS masking side effects from my chemo day before lol. But on the way home July 3rd, I caused a crazy, stupid, random injury to myself by swallowing water wrong!! Yes, swallowing water wrong! I always try to hydrate well prior to and after my Darzalex infusion, and speaking of that, I must grab a water bottle NOW to hydrate for my 2:00pm, FIRST ZOMETA infusion...

Anyway, on the way home Tues July 3, I took a big swig of water as I was driving, and managed to swallow it wrong, which for me, causes me to need to choke, spit out, cough and sneeze all the same time. This reaction has been exaggerated since my SCT, so something must have changed in my Esophagus? So anyway, in that split second event, I had to choose to spit out in my car, or suppress, repress the choke, sneeze, cough. Well I made the STUPID choice to repress, suppress, restrain that urge, and pushed down the cough, sneeze, choke, awkwardly swallowing the water. You know that feeling when you repress a sneeze. Bad for anyone, but super bad move on my part, as apparently sitting seat belted in, I managed to jar and shock my body into a horrible muscle spasm!

I immediately felt a shocking sharp, searing, tearing, stabbing blot of pain, pinching and ripping in to my Left side rib, chest area, under my bra. Absolutely took my breath away. I kept driving, tried deep breathing, adjusting my posture, and doing mini stretches at the red lights. (Yes, I routinely take the street route home after chemo just in case I am not ok, and can easily pull over). But thanks to Dex steroids, I didn't feel incapacitated at that time and continued home. For the rest of evening and into July 4th, I felt a deep suppressed pain, but it was definitely masked, buried deep, unbeknownst to me, ready to attack in the next several days.

The 40mg steroids I took Tuesday morning suppressed and masked the pain for about 48 hours, but I could feel the deep intense pain coming on, in the middle of the night, Thursday. By this time, I had already done 2 of the 4 Zarxio injections to up my WBCs, so I thought maybe the pain was exacerbated by that, or was being caused by what Zarxio Neupogen is supposed to do... grow more White Cells fast.

Late Friday night, I Googled Left side pain, and was alarmed that it could be my spleen or other vital organs, which is a side effect from Zarxio! I continued to read more about muscle pain, tearing, spasms, and causes, and the good and bad of steroids, as the pain intensified. I learned there is definitely muscle weakening and "muscle wasting" from steroids, and there's differences between all the different types of steroids, Dexamethasone being the strongest. It was too late to get myself to Urgent Care, so I took more Advil, and a muscle relaxant I've had on hand for times like this. Made me think of how many times since Myeloma, I've had excruciating muscular pain, tears, spasms...

"Prednisone is 4 to 5 times more potent than Hydrocortisone and has a longer duration of action, perhaps 12 hours or more. Dexamethasone is 40 to 50 times more potent than hydrocortisone and even longer-acting, 18 to 24 hours.

"Steroid myopathy is damage to the muscle fibers caused by treatment with corticosteroids, such as prednisone, cortisone, dexamethasone and fludrocortisone or overproduction of steroids associated with Cushing's disease. Myopathy causes changes in muscle fibers, including atrophy (shrinkage), lipid (fatty) deposits, necrotic (dead) areas and increased interstitial (connective) tissue between fibers. You may have severe damage to the muscles while the muscles appear normal in size."

"Muscle wasting, weakness with Dexamethasone

Glucocorticoid-induced myopathy is the most common type of drug-induced myopathy

Although any commonly used glucocorticoid can cause myopathy, it is implicated more often with the fluorinated glucocorticoid preparations, such as dexamethasone, triamcinolone, and betamethasone. Switching to a non-fluorinated agent are associated with improvement in muscle weakness."

Those are just a few statements from when I Googled muscle pain, spasms, wasting, etc, regarding Dexamethasone and various steroid side effects. If you haven't before, Google it, very interesting...

So my mind is racing and my body aches. I'ts difficult to breathe, or breathe deeply. I take short little breaths. I can barely adjust myself in chairs, and in bed the pain is so intense, even with Advil and Flexeril. Every time I shift my body, I get searing, tearing, sharp awful stabbing pains. And I can barely get in and out, of a chair. Lying in bed was worse. I could hardly adjust my self one way or another. Just ridiculous and debilitating. I question "everything" at this point, and ask myself, what I do with my beloved animals when they are in pain or in a medical crisis: "Am I Prolonging Life.... or Extending Death".... I'm so miserable at this point...

The days roll into themselves, with me just trying to breathe, move, and get by to the next day, with hopes the extreme pain will diminish. Friday rolls into Saturday, into Sunday. Of course my family is urging me to go to Urgent Care, but as always I resist. I'm so miserable and painful, I couldn't bear the thought of going anywhere in a car and trying to speak to people about my situation. So I don't. Meanwhile, I take Advil hoping it's anti inflammatory properties kick in. I question my life, what I'm doing, what happens from just a random event, that would probably not even affect the "normal" person. I think about everything I have been through in the last 8 years. I think about how all this will be never-ending, and I'll never get a break, and it's only going to get worse. I think and think. I'm so frustrated with what happened to my life. Inwardly I cry "no fair", "why me", "how come". What really is my life now, or to come... I look at my property, animals, family, and remind myself how incredibly blessed I am. I shut down my negative thinking... 

Sunday and Sunday night was the worst. The tearing, searing immobilizing pain. But I am very careful how much Advil I take, as I don't want to cause damage to my Liver, Kidneys, etc. I still wonder about Zarxio and my Spleen, but I didn't think I had a spleen crisis, as I don't have those symptoms, thank goodness! But just in case, I didn't do the 4th Zarxio injection...
And in the middle of all this, when Advil quieted my horrible pain just a tiny window, I took our Box Turtle to the Vet to have his nails and beak trimmed. I had made and cancelled this appointment too many times, so between immobilizing moments, Dot the Turtle had his pedicure :))

Monday, as I wake up and begin move around, I feel some relief. I haven't had any medication since Sunday night. I realize relief is coming, slowly, but on it's way. I continue to move as if I'm made of glass. I do this because of my Myeloma "holes". I do this because of muscular issues. I hate living like my body is glass, but I hate pain more. I take an Advil and wonder what the day will bring. I move slowly, aware of every ache, pain, tearing sensation. I am so angry at my body's betrayal. Slowly, with an irregular Advil, again worrying about my Liver and Kidneys, I feel slow relief. I move ever so tentatively, but I know I must move and try to unstiffen these stiff, pulled, torn, spasmed muscles. I admonish myself for my stupidity for repressing the cough, sneezed last Tuesday.

Now you know why I couldn't post on my "regular 8", July 8th. I started a post, but gave up. I was a mess. Overcome with pain and frustration. Today, Tuesday July 10th, I am leaving soon for my FIRST ZOMETA IV. My pain is better, but of course, guess why??? Yes, today is Tuesday, and when did I last take my weekly steroids? Yes, last Tuesday! So good timing with my weekly, or should I say "weakly" Dex steroids... to the rescue today. But with all I read, I only took 20mg of the "requested" 40mg. 

Also, I did call Urgent Care today, and I will go in for an xray after my infusion, unless the infusion makes me feel yucky, but I suspect now, because again, Dex to the rescue, I'll be ok... today... Who knows how I will feel when my nemesis Dex wears off in 36, 48 hours??? Ugh, waah, waah, waah,... I have to deal with the new Zometa side effects, on top of the muscle spasm, on top of the steroid crash, and oh yes, did I mention, I started my 1,000,000th cycle of Pomalyst Sunday night! Really life? Is all this for real or am I just writing a fiction novel here? 

(Sincere apologies to those reading this who have much more intense life challenges than me.)

Onward I march daily, 

because I "have to", 

because I want to... 

because, because, I must...

Here's my Lab results from last Tuesday's Dr appointment: 

Still no MProtein

Maybe masked by Darzalex?

Darn, IgA over 3x the high end of normal

Not too bad, but WBS = super Immune Compromised

ANC was .8, therefore my Dr prescribed Zarxio

And so dear friends and followers, near and far, that's my story for this week. I keep hoping for a BORING BLOG  POST, but Myeloma just wants me to keep all of entertained. As always, thank you so very much for caring as you do. Hope your life is as smooth as a lake sunset. 

Live happy, live well, and make a difference somewhere, somehow, 

with someone or something as often as you can!

8 Years Ago Today, SCT Anniversary Birthday!

Hello 7.5.18

8 years ago Today, I received my cleansed and cancer-sanitized Stem Cells back into my Myeloma ravaged body. I am proud and thrilled to still be here, able to tell my story and be as "functional" as I am, thank you to modern medicine, amazing people in my life, and my body's ability to handle cancer killing chemicals!

I reflect annually, July 2 - 5 on my initial hospitalization for my Stem Cell Transplant, on July 5th, the Day My 5 Million little Stemmies were infused, and then for the entire month of July. Always I reflect. 24 7, I reflect on my life and my situation. Still so incomprehensible for me...

Sorry if you already read this on my FB page...

"On July 5th, 2010, at about 11:30am, after 2 days of high dose Melphalan chemo, and more supportive meds than I can remember, I received about 5 million of my own Stem Cells infused back into my cancerous body😮

The expectation is that this intensive chemo (after the previous 5 months I had already had), will kill off the myeloma cells, but not me, and the baby stem cells will revitalize, regenerate, renew my system. Lol that's a ridiculously simplistic explanation, but essentially the process😵

In the days following, I became extremely sick, which is to be expected, but my body took it to another level, as my "infusion tubes", aka Hickman Catheter, became horribly infected. I had emergency "room service" surgery to remove it, and was on 5+ antibiotics simultaneously, and bags and bags of supportive meds and nutrition for the whole month of July 2010!😢😭

I was finally well enough to be released home July 28th, and treated with home health care for another month. I slowly recovered, lost my hair, and slowly rediscovered myself again. No doubt being isolated in a hospital room and very very sick is a life altering experience😲

But here I am, 8 years later, able to share my (very edited) anniversary story with you! I am so grateful to be alive, and still able to battle these vicious, unrelentling myeloma cells trying to do me in🤣

Tuesday's chemo has now stolen my celebratory helium, and those energy producing steroids that allowed me to play yesterday, is biting back. So I will conclude my stories for now, and rejoin the world in a few days, which will be just in time to brave up for my new "bone strengthening" IV next Tuesday. The hope is this new med will make my bones, lesions and holes stronger, where myeloma has turned me in to swiss cheese🧀😲

On and on and on goes the unrelenting battle for my life. It's as unbelievable to me, as it is to you! But one day at a time, one treatment at a time, and I live today, fighting for many more tomorrows😀

============
Here's a look back on my 8 years of reflective posts.
They're all so different, yet so similar.
Some years I was more reflective than others.
Some years I didn't write as much as I do now.
Half of 2012, 2013 I wasn't on Myeloma maintenance, and trying to be "normal" again. My Dr and I wanted to test my system and see how I would do without Revlimid continuing to battle on my behalf. Well, soon we found out Myeloma's stealth and vengeance, and back into treatment I went, Fall 2013, and have been there ever since.

As I've mentioned so many times before, the longer I live, the more intense my situation and status becomes to me. I guess my "cancer reality" just sets in deeper, the longer I survive and battle this monster, and "suffer the consequences" of  continual treatments...

2017 Hospital Admission Day

2017 SCT Memories

2016 Reflections

2015 Hospital Admission Day

2015 SCT Anniversary

2014 Hospital Admission Day

2014 SCT Anniversary

2014 SCT Reflections

2013 Not much reflecting!

2012 Unsuccessful Celebration

2011 One Year SCT Reflections

2010 The Whole SCT Experience!


It was a very busy first week of July, as I had my monthly Darzalex infusion on Tuesday, July 3, then the 4th of July holiday was yesterday, and here I am, July 5th, exhausted from "playing" yesterday. Tuesday's steroids are now waning, and the Darzalex and Dex steroids side effects creeping up on me...

To be continued.... as I have test results to report, and Dr conversations to share... Thanks for reading and caring as you all do, and I'll post more medical details on my upcoming July 8th post.

Happy 4th of July

Thanks for going to the Parade with me!

So fun to see these sweet Princesses at the Parade 

Yep, Pomalyst crashed my system this month,

back on 4 days of immune system boosting Zarxio Neupogen shots

Shots and pie!

Happy 4th of July to America

Live happy, live well, and make a difference somewhere, somehow, 

with someone or something as often as you can!

Yes Myeloma, You Own and Control Me

6.28.18
Hello end of June!

I have so many different directions I could take this post. My brain whirring like a summer fan. My thoughts are continual, non-stop, my questions persistent, my shock and awe still ever present. I just can't stop thinking about my situation and what has happened to me. Perhaps with many, the initial cancer diagnosis is the shock. Or initial chemo treatments rock one's world. Maybe losing one's hair, or extreme side effects from treatment, brings cancer's reality home. Maybe hospitalizations and stem cell transplants slam cancer's reality home. But for me, the longer I survive causes me to realize how serious and tentative my situation is. Yes I was blindsided by each event I mentioned above, but it's the LENGTH of time I've lived with myeloma, and the CONTINUOUS, unrelenting status of  treating myeloma to STAY ALIVE, that never ceases to stun me and remind me daily, the insane circumstance I live with.

I am always processing how "out of control" I am of so many things in my life now. Prior to diagnosis, my body was basically my friend. Certainly not my enemy as it is now. I really didn't focus on my health much. Just took a lot for granted. Now, I can't help but focus on how little control I have over how my cells are continually cancerously morphing. How little control, actually no control I have, over deadly myeloma cancer cells multiplying defiantly, stealthly 24 7. I feel limited control over my future, my treatments, as cancer patients are completely dependent on medical science research for treatment pharmaceuticals, and on our medical professionals that determine what medications to treat us with. We like to think we are in control of our lives, and to degrees we are, but ultimately, not.

I can't help but remember my past days of carefree health, where I barely took any medication at all. I grew up with barely an aspirin in the house, as my parent's were "grin and bear it", anti medication type of people. Maybe we used aspirin for fevers, "Bactine" for cuts, but I don't recall knowing about Tylenol, Advil, cold/flu medications until I was a married adult. My parents took pride in having dental work done without Novocaine! I wasn't quick to give my kids pain meds either, and basically we were all really healthy people that didn't get sick or injured much, and didn't need pharmaceuticals. As I write this, I'm trying to recall what meds we did take. Allergy meds for all the seasonal polllens and irritants, and I developed hypothyroidism early in life, so I was on Levothyroxine for that. I can remember when people were over, someone might ask for a pain med, or allergy med, and I'd have to scramble to see if I had anything, and that it wasn't expired. We were so fortunate to be so healthy, carefree, and our bodies our friends.

Me, at about 14 or 15-
So brave, no drama!

How different my life is now, thank you myeloma.

A drawer in the kitchen holds all my myeloma meds, and supplementary pills. I have 2 pill boxes. The daily Monday through Sunday plastic boxes, that I once thought was only for "old people" or the "really sick". Guess I've joined that club. One box has Pomalyst, a half Benadryl, and a .81 aspirin, refilled 21 days. Then the other, Acyclovir, B12, D3. Also in this drawer is a variety of children's fast melt Tylenol and Advil, as well as adult strength. A variety of allergy meds, such as Benadryl, Claritin, etc. There are other Vitamins I irregularly take, a supply of Imodium left over from my "volcanic diarrhea" days, and older prescriptions for pain, muscle relaxants, nausea meds, antibiotics, etc. Most of those are expired, as I rarely need those. Our secondary "medicine cabinet" in the bathroom holds Salonpas, BenGay (for all my achy muscles), Pepto Bismal, Imodium, Tums, etc (that thank goodness I don't use those much anymore), and all of Jim's medications. And lest I forget, the refrigerator, holds several syringes of Zarxio (Neupogen), for when my WBC and ANC drops to Neutropenic status. But I know well, this is "Nothing" compared to my fellow myeloma warriors who have excruciating bone pain, continual infections, and worse side effects than I do...

But what I've really been processing recently, is my and all patient's lack of control over our treatment options, and ultimately the longevity of our lives. Yes we agree to myeloma treatments, but we are solely dependent on developed medications, what our Drs recommend and what insurance pays for. I know of so many myeloma patients that have run through all the "traditional" myeloma treatment options. Clinical trials are their only option, or the new Car T trials, or even sorting through past treatments, hoping to combine old and new meds for a new magic. See, choosing or agreeing to treatment is not like deciding what flavor of ice cream we want. We have to follow established research protocols, Dr analysis, pharma reommendations, insurance approval, etc. I understand "the why" for safety's sake,... but not being in control of my life, I will always struggle with.

Back when I was diagnosed, and prepping for my autologous stem cell transplant, I was in the "deer in the headlights" stage. I had immediately read till my eyes and brain hurt, but I really couldn't process what myeloma was, or what I would be going through. I felt informed, and fully trusted my medical team, so I eagerly did what they recommended. Yes, my perspective was always "less is more" and my Drs learned that I easily developed fairly serious reactions to meds at higher doses, so I never went beyond 10mg/15mg of Revlimid, etc. I didn't have much say regarding the stem cell process, but I survived that, and was very fortunate to have remission with maintenance Revlimid for 2 years. Without maintenance, myeloma came back in 2013 and I've been in constant treatment ever since.

I've blown through uncountable rounds of Revlimid Dex (steroids), almost a year of Kyprolis Dex, and now Darzalex, Pomalyst, Dex, since March 2017. My IgA is climbing again, and both my local Dr and my SCT Dr are suggesting changes. First, increase Dex steroids from 20mg weekly to 40mg. IgA still climbed. Next, increase Pomalyst from 2mg/3mg alternating for the 21 day cycle, to 3mg only. From my recent labs for my my SCT appointment last week, my IgA climbed 300 points in 2 weeks. Ugh! So the conversation headed in the direction of what's next, what do I have left as treatment options and clinical trials...

Sorry, Nope, to clinical trials. Those scare me. With my luck, I'd wind up on a trial with the highest dose... and... well... yikes... nope... not there yet... Guess I'll brave up when I have absolutely NO options left. As I see it, I still haven't given Velcade injections a fair try, and then there's Ninlaro, the pill form of Velcade, and there's a variety of "approved" meds still on my menu, that I would brave up to try.

But before I change anything, I want to go back to the 2x monthly or weekly option of Darzalex. My IgA was almost "normal" when I was on the initial Darza Pom protocol. But for whatever medical, cellular, research reason, the protocol was determined to be: Weekly for 8 weeks. Then every other week, (2x per month), for another 8 weeks, then monthly until it fades and we become refractory to it. Well my perspective is, unless Darzalex has been determined to be toxic for extended periods, I just have to see for myself, if going back to 2x per month or weekly could still be my magic elixir. And this is where the "control" or "out of control" issue pushes my buttons... Shouldn't patients have a say so about this? If it worked before, heck, let's try it again. And I'll sign all the waivers necessary, since it's perhaps not a studied, approved protocol, which I can't believe the pharma developer isn't currently researching this option... maybe they are?

Myeloma stole my life, my body, my energy, my options, my choices... I just want want my voice to count...

Ok rant over... I wasn't going to write this much, but oh well... this is where my head's at right now. Very frustrated with myeloma owning me, medical science owning me, medical professionals owning my options, etc. So next week, at my Dr appointment and Darza infusion, this will be the conversation I will have, albeit edited, if my stats have continued to rise even more. Ugh, I hate you so myeloma for stealing my life, and making health, survival, medications, side effects, fatigue, pain, bodily functions, treatments, and being sick, the Focus of My Life!

Here's my stats from last week, and I'll do labs again today for next Tuesday.

I apologize to all my fellow myeloma warriors out there who are having a much worse, and much more difficult time than me. I apologize for whining about my situation, knowing that so many of you are in a much more challenging situation than I am, regarding treatment options, insurance coverage, unsuccessful trials, etc. I apologize to anyone reading this who is in horrible pain, is out of treatment options, or who's circumstances make mine look like a vacation. I apologize to anyone who is on hospice or has a loved one in hospice. I used to think I was a pretty strong person, but myeloma has humbled me, and I'm not so strong and brave afterall. I don't do well in pain, or out of control of my circumstances, and I apologize for ranting like a whimp! May all of you find peace and happiness, and treatment success.

Live happy, live well, and make a difference somewhere, somehow, 

with someone or something as often as you can!

Eating to Feed Me and Starve Myeloma... Ha!

Hello 6.18.18

Confession time...
I broke out of my myeloma bubble and went to Country Concert, and I ate horribly all day long!

I actually wrote this late Saturday night, 6.16.18 , as I took my 40mg Dex steroids early morning, so I'm tired physically, but my brain is still so awake, so I write on!. I'll sleep when the crash comes :))

Yep, I stepped out of my Antibacterial Bubble to play, and of course now, I'm wondering if I'll "pay for it" in a few days... Last time I chanced being around crowds, I got horribly sick from trying to have a bit of fun. Here's my posts from April, with that adventure and sickness consequences:

https://juliesmyelomamoments.blogspot.com/2018/04/yolo-another-scan-another-birthday.html

https://juliesmyelomamoments.blogspot.com/2018/04/caution-not-happy-post-thank-you-you.html

https://juliesmyelomamoments.blogspot.com/2018/04/myelomas-life-lessons-never-stop.html

But, tonight was a bit different than the Country Dancing (inside) Club adventure of April. Tonight's venue was OUTSIDE at a Park, and I was firm about my no hug, stay way, don't give me your cooties policy!! There were hundreds, maybe thousands at this Country Concert event, and since I was a local college counselor for 35 years in this area, I knew half of all the attendees. Joking!! Well, maybe a 100. It was so sweet to see my students and kid's friends start to rush up to me to hug me hello, and me, in Turbo Reverse, waving my hands at them to stay away and get back. Several of them thought I was being my jokester self, and keep heading towards me, until I called out... "Noooo, seriously, get back, I'm on chemo, I'm immune compromised and I don't want your cooties".... Ooohhhh noooo, so many of them said, and looked a me quizzically. So many just don't understand Myeloma is for LIFE and INCURABLE, and for me, CHEMO IS FOR LIFE and being IMMUNE COMPROMISED is for LIFE.

Yelling above the blaring music, I quickly update everyone about my cancer, chemo, treatment, etc, status. "No way Julie, but you look so good, how can you still have cancer, we didn't know you were still having to deal with this, how can you look so great, and not look sick, etc". Yes I am grateful and appreciative for all their kind comments, but I really need to design a Tee shirt that says... "BACK OFF! IMMUNE COMPROMISED CANCER PATIENT ALWAYS ON CHEMO, KEEP YOUR COOTIES AWAY!"

We had a fun time, but it wound up getting quite cool, and I didn't bring a warm jacket, as before we left, I was hot and sweaty from my 40mg of Dex roids kicking in, so Jim and I left before the concert was over. We did last from 4:30 to 8:30! Super bad, was that I chose not to HYDRATE AT ALL there, as I didn't want to use the PORTA POTTIES!! So I was really thirsty and ready to get home and hydrate! Each time I venture out like this, I realize how much cancer and treatments have changed me. I just don't enjoy big crowds as much any more, and I can't fully relax and enjoy anymore, as I always feel so "on guard". My funny Food Confession story is to come further down, but first a little background to put it all in perspective...

People often ask me what I eat, what "diet" I follow, what supplements, vitamins, herbals, etc, I take to stay to well, healthy and be an 8 year myeloma survivor. Well here's my trick: I'm on my own version of the ever popular "SEE-FOOD Diet"!! Get it... SEE.... FOOD... I see food that appeals to me and I EAT IT! ahahahhaaaa! For real! I do whatever I want now, but always focused on balance and moderation... with a day here and there of true "Whaaaatt Evvveeer"!!! Today was a What Ever day for sure!

Most of the time, I eat/drink really healthy and balanced, powering my fighter cells to ward of myeloma, and to keep my organs clean and healthy. My body doesn't stand a chance battling back those stealth myeloma cells, if my organs fail me.

So I try to hydrate well. I have a cup or 2 of decaf coffee most days, except on Dex steroid crash day, as I have such metal mouth from the roids. I'll take my Acyclovir capsule, and vitamin D3, B12 with a Boost, (low Glucose, lower calorie version), and then spend the rest of the day drinking water, 100% juice Cranberry watered down with plain water, and or fruit flavor infused Sparkling water (no calories or sugars, just pure water, no artificial sweeteners) with the Cran juice. Or I may squeeze a fresh lemon in my water. I may have OJ, or if we have Tangerines from our tree, I juice those. Yummy!! Evening, more of same, but usually have Celestial Seasons Herb Tea, or fresh squeeze a lemon for fresh lemon tea.

From our fruit trees!

I try to get something from each food group daily. I try to get enough protein, but I've never been a regular meat eater, and think I deprived my body of too little protein back before my diagnosis. So I try to eat nuts, cheese, cottage cheese, yogurt, no preservatives Deli meats, Lean Cuisine's that have various forms of protein, fresh Tofu, occasionally, and if we dare to go out to eat, that's when I get BBQ beef, such as steak, prime rib, etc. The Boost drinks I use, have 16 grams of protein. And my best of all protein from FRESH EGGS from our very own Hens!

As for Fruits and Veggies, I try to have greenery and healthy colors daily, but stick to frozen, cooked veggies most of the time, since 1- I am so regularly Neutropenic,and follow a Neutropenic diet, and 2- there are so many bacteria warnings and scares of Salmonella, e-Coli, Listeria, etc, with fresh vegetables and fruits, I'm scared to eat fresh! Here's one of my faves:

But I do periodically take a chance, and eat fresh such as berries, avocados, bananas, cucumbers, tomatoes, but I am super hesitant to eat salads any more, which is sad, as I love salads with a whole variety of goodies in it, made by me. I also eat baked potatoes and yams, but as I write this, I realize I don't do anything "regularly" , just what my super shopper daughter buys us, and also what appeals to my taste buds at the the time. I don't go to the grocery stores, especially during cold and flu season, so we are very lucky to have our daughter be our amazing super shopper!

This was my all in one pan of fresh eggs and veggies, 

with a dollop of sour cream and a sprinkling of Parmesan

Ok, so you get that make the effort to eat really healthy most days, and something from most food groups. Oh, I forgot to mention that I love breads, but I don't allow myself to eat the whole loaf on Dex days lol. I also enjoy quality Granola with Coconut milk. But again I don't do anything the same every day... so funny to really realize this as I write it out.

SO WHERE AM I GOING WITH ALL THIS???
Today wound up a crazy calorie, genuine "SEE FOOD Diet" day!!

I had bought tickets to the Country concert a month ago on a frustration whim. After being so sick for so many weeks off and on, Nov, Dec, Jan, April, and having to absorb the reality of my Pet CT Scan Lytic Lesion Holes (see my most recent May posts)... I decided it was time to venture out of my sanitized bubble and try living life a bit. But all morning long, I truly wasn't sure if we would actually go. The 40mg steroids did not give me the kick and boost it normally does, so I didn't feel a desperate longing for excitement or socialization. But I paid for "VIP" hoping that would keep us away from the massive crowds, and also, they had advertised "special porta potties", and seating. So I decided to go, see what it was like, and decide to stay or go, after perusing and cruising around.

The problem... to eat or not to eat from the Food Trucks there!! First of all, they were quite a walk away from our seating area (which was really bad planning on the organizer's part!), as my ol hubby has a lot of mobility and walking issues, so bounding back and forth from our seating area to the food area was not happening... except for our super shopper, super food finder daughter Alissa coming to the rescue! There were a lot of Food Trucks in a variety of areas, that could be missed, so here's what she found for us, and what I ate today before we went. It's really ridiculous, as I never eat like this!!

This morning I had my double dose steroids with a low Glucose Boost.
Then some coffee, water, juice and water, etc
Then I realized we had some muffins, and special sourdough bread my son Scott brought from a specialized bakery, from a recent trip he had been on. Yummyyy!!! Warm bread with Cinnamon Butter. Carb and sugar overdose already. "See Food Diet" today for sure, LOL
So I balanced that with some Cottage Cheese
Then I had another Boost with my Acyclovir and Vitamins. I usually only have 1 Boost per day, but had forgotten I had one with my Dex steroids, right as I opened the 2nd one. Oh well.

I don't think I had anything else, as I was a bit worried about what my GI might do at the concert, but generally on Dex days I'm well corked up!

First food hunt was with Alissa's friend leading the way. Lines and Crowds, oh my! We found the Corn Dogs with fries first, and decided not to venture to the other area for more options, as the lines were long, and crowds thick! I didn't realize they had a whole food truck court, just past where this first option was. Again bad bad design of the Organizers. Anyway, I seriously, never, and I honestly mean never eat those, as I don't like, nor do well with fried food, but I thought Jim would enjoy it, so we bought 4 corn dogs and fries! I ate a whole corn dog! I'm not a fries person, so I didn't eat those.

Not long later, as it was getting colder, food was talked about again. Alissa and her friend set off to find more options. They return with a Grilled Cheese and Bacon and a 4 piece mini pizza. Yes friends, I ate whole Grilled Cheese and 1 piece of pizza, and ate the cheese and sauce off a 2nd piece, but didn't eat the bread/crust part lol. OMG have you added up the Carbs and Calories, and empty food value of what I ate so far?? I felt like a trapped animal by this point, as I wasn't really enjoying the event a whole lot anymore, and I certainly wasn't enjoying not hydrating, and eating well. I'm so used to being home now, and having access to what I want, when I want it. I've decided I just don't like being in loud environments, where it's struggle to talk, and worse yet, have people lean in to me, to hear what each other is saying. That's deadly germ transfer, right there, like that!

So at this time, we decided to leave. I couldn't wait to drink bottles of water on the way home and began my quest to hydrate now that I would be home, and safely by my OWN potty!

I was mentally adding up the unbalanced foods I ate, and laughed at my attempt to join "the real world". Crazy how illness, mobility, and always thinking of the "what if" really changes a person. Things that used to be so fun, aren't so much anymore. Everything seems like a "risk" now. Everything seems to have potential negative consequences. The things I used to do so spontaneously, are not worth it anymore, nor do they have the "reward" they used to. I always think that I'm missing out on so much, but I'm really not... cancer has changed me...

I couldn't wait to drink in positive calories and hydration, so I juiced probably 20 Tangerines, and had a glass of Mango Smoothie. But then I saw part of a Blueberry Muffin left, so I sheared off the "muffin top" and ate that! All the while saying, "what the heck, who cares, today is today, and tomorrow I'll go right back to broccoli and water" LOL. Yes, that's the story (written while on 40mg of Dex lol) of my crazy erratic eating, trying to be "normal" and go to a concert, and how I've survived myeloma for 8 years on my own version of the "See Food Diet" !!!!

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

Back to Reality...

I have my every several month's appointment with my Stem Cell Transplant Dr this coming Thurs June 21. We'll see what he has to say about my "Holey" scan, and current labs. 

Then July 3, Darzalex infusion, and July 10, my first Zometa infusion. 

I'll be editing this crazy steroid post, but thought you might enjoy a "raw" post, written on a steroid buzz, where my brain was all over the map. I will always look for laughs, finding humor and sunshine in looming dark clouds. Hope you got a few laughs from this all over the map post :)) 

Live happy, live well, and make a difference somewhere, somehow, 

with someone or something as often as you can!