Unfiltered Frustrations

4.28.18

I'm still sick.
I'm so frustrated with my life
I am so sick of being sick
So sick of feeling, being sick all the time
So sick of trying to avoid being sick
Then getting sick anyway

Yes I'm very grateful for so many many things.
Yes I am still an optimist and I have a lot to be thankful for
Yes I am strong, a survivor, a cancer warrior, and so aware that I am better off than so many many many
Yes, I know, I really do know, how "lucky" I am.... blah blah blah...
But I am very frustrated with MY life
My life right now.

Sorry to offend, sorry to whine, sorry to feel so pitiful, sorry to sound so ungrateful for all that I do have going for me...
But I am so very frustrated with MY life.
My stolen life.

I'm still sick.
It's now been 3 weeks being sick.
I am better than a week ago, and a week before that.
I am a little better each day, but I'm still sick.
Sick for more than 3 weeks.
I am so frustrated with MY life.
My stolen life...
.
It started with a horrible sore throat. Just horrible.
Then the fever for 2 days. Just awful. I felt just awful. I cried.
Then the nose, the head congestion.
Then the cough. The never ending, never relenting cough.
Coughing all night long. Choking, hacking, all night long. Still.
This bug is relentless.
3 weeks!

Yes, all this is physiologically "good". Good that it is draining out.
Yes, this is the process of illness.
Yes I am grateful my body is doing what it should do to get well.
But sooooooo slowly, so dramatic each day. Little relief each day.
Yes this represents my lame, immune compromised body trying to fight off the evil invaders.
Yes my weak immune system is rallying. Yes I am getting better a little bit each day.
Yes all the congestion, coughing, etc, is clearing out all the cooties. Slowly.
Too slowly.
Yes I know the biological process of a headcold, of this gross sinus infection.
No I don't have patience for the process
I've run out of patience
Cancer treatments and side effects teach patience
But I am impatient.
I don't want to learn more patience.
Dang it, 3 weeks is a long time to feel continually sick. Just sick.
Dragging, blah, weak, tired, defeated, deflated, yucky, clogged, stuffed, drained and draining.
My ears have been so plugged for days and days, I feel like I have cotton stuffed in them, or I'm under water.

Yes I am very very very fortunate I can battle on my own.
Without antibiotics, with just OTC help
Without getting seriously ill with pneumonia and winding up in the hospital.
Yes I should be proud of my feeble body for rallying as it does, and healing as it does, albeit sloooow.
Yes I am so aware of those that cannot battle on their own
So aware most myeloma patients, chemo patients wind up in the hospital with pneumonia in cases like this.
I am aware how bad "it could be", and No, I will never forget my month long hospitalization for my stem cell transplant process and recovery.
I am very fortunate I haven't been back in the hospital since July 2010.
Yes I am very very aware of how much suffering there is, and how bad it could be for me...

Kathy Boyer, Artist-Photographer Extraordinaire 

But I'm really really really frustrated with MY life.
What life?
Am I living or just existing?
So sick of being sick.
So sick of trying to avoid being sick, then getting sick!
So sick of postponing my life.
So sick of seeing my life go by, day by day, just waiting.
Waiting to be well to live life
Hoping for a break
Hoping to feel well enough to catch a break, to have a bit of fun
Hoping, waiting, wondering, not in control.

Oh, shut up Julie, you have a "great" life.
You're alive!
You've beaten Myeloma for 8 years now.
You have so many things to be thankful and grateful for
Yes Yes Yes
I know I know I know
So many many many things to be grateful for and I am...
I truly am...

But dang it, I am so frustrated that my life was stolen from me 8 years ago, and it will be stolen from me forever, as my reality is I have a severely weakened immune system, I will never ever be normal, I cannot engage in normal activities. I get sick when exposed to any germs and cooties. Always. I have no immune system due to Myeloma's ravages and chemo treatment ravages. No one in my family is currently sick. Nor did they get this illness. We were all together at the time I believe I was exposed. They all have normal immune systems. They are healthy, I am not. I'm the only one who got sick. I tried to have a bit of carefree fun, and I paid dearly for it.

I have cancer, I am sick, I will be sick forever...

I'm so sad about MY life-
So sorry to be so honest, but I am so sad about what has happened to me.
My plans, my future ideas and goals... what a joke...
If one is not well, one cannot do what they plan, wish, dream about.
I really didn't have "big" plans, just a few little adventures
If I'm always sick, or feeling sick, or avoiding being sick, am I living life?

Yes I am beyond grateful to just be alive. Yes I am.
But why so much suffering, so often.

My ears have been so plugged. I feel like I'm living under water.
So much crud, gunk and phlem... but getting better each day...slowly, so slow, too slow
The cough isn't quite as deep any more
Thankfully, it wasn't ever bronchitis-deep or in my chest, just a relentless cough, my body trying to rid itself of the cooties. Thank you body for trying so hard. So tired from it all.

I am so sad for what has happened to MY life.
I could list all my frustrations, but I would sound so shallow.
I have so much to live for, and I do everyday.
But sickness, feeling sick, or debilitating fatigue, sabotages me.
I just can't get over how limited my life has become.
How illness, side effects, treatments, then more side effects own, rule my life.
My stolen life.

When I am "well", I still only have a day or so to "play"-
I'm either experiencing side effects or planning for them, from the medication crash.
Can you imagine planning each week, when you'll be "sick", when you might be able to be well?
Yes, illness is MY life, and I still cannot believe it.
Yes it can always be worse, and it is for so many.
The suffering in the world is overwhelming.
The suffering from illness is beyond anything I ever understood.
We empathize when we understand-
And I now understand how debilitating illness is.
I wish I didn't...
I wish I didn't have to learn all these lessons.
I wish I understood why this happened to me and others.
I wish for everyone's health, happiness, healing, no pain.
Guess I'm wishing for a non reality.
Life is challenges, pain, struggles, infinite mountains to surmount.
Honestly, I don't want any more mountains to climb.
I don't need any more challenges.
I don't want to be tested any more.
But I will be, forever and ever and ever, thank you Myeloma.
I just want peace, serenity, calm, beauty, laughs and lightness.
I just want to be.
To breathe calmly, to breathe in nature and beauty, and to laugh at, and with life.
I just want to own my own life again, but that's not possible.
Myeloma owns me and my body, forever...

I'll get through this, I will, I always do.
Thanks for reading if you got this far.
May your life be what you want it to be.
May you find laughter, happiness, peace, joy, and most of all... health.

Grateful, Thankful, Beautiful Life

==============

We said GoodBye to beautiful Charlene this past week. Her body failed her. She very quickly developed Kidney failure, lost a ton a weight, had a hard time eating, became dehydrated, so fast, so sad. But she had 3 good years with us. I rescued her from the Shelter March 2015, after her family turned her in, not wanting her any longer. She was around 12 then. Such a sweet purrrfect kitty. Our hearts are broken, but she had 3 extra years of life. My Betta fish died a week ago, and a few weeks prior, one of my Triplet rescue sparrows also passed. Our bodies betray us, but life will always march forward. Always... 

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

with someone or something as often as you can!

Myeloma's Life Lessons Never Stop

4.18.18

Hello Everyone-
I'm alive! But still in the process of surviving this awful sinus crud that attacked me. The 40mg Dex-steroids from Monday have worn off, so I feel super blah, lousy, clogged, tired, weak, headachy, ouchy, and full of crud still. If you haven't read my previous 4.14.18 post, (I just had to sneak in between the 8's), please do. Gives you detail about what my "body of betrayal" has been putting me through recently. I'm still thinking about how "stupid" I was to break all my antibacterial protective rules for my daughter's birthday weekend. Everyone says "it was so worth it Julie"... hhmmm me... not so sure :((

Each time someone talked to me, they spewed their cooties at me!

Duh! Lessons learned for sure:
1- don't go to dance clubs/bars with masses of people when you are Neutropenic!
2- don't go to restaurants, chancing massive cross contamination, when you are Neutropenic!
3- don't go out in crowded places when your WBCs are barely 2.0, and your ANC is .81
4- don't assume Zarxio Neupogen shots will magically make you "normal" and strong enough to battle off invasive cooties Julie.
4- don't pretend to forget myeloma's enormous impact on your life Julie, myeloma owns you.
5- don't let your guard down again, you know the outcome. Your immune system is NOT normal and will Never be normal Julie. Accept. Accept. Accept...

Cooties, Germs, Cooties, Germs everywhere, out to get me!

Yep, I have to, have to, have to, accept I am a cancer patient. My body is not capable of protecting itself. I'm not normal any more. Haven't been, most likely not since 2008. I have no doubt Myeloma was digging in, mutating out of control, and taking over, the 2 years before my Dec 30, 2009 diagnosis. Otherwise, how could I have had 70% cancer at diagnosis...
Yes, I go for so long not taking chances, then I do... and boom, reality slams me, and I'm a sickie. 

Anyway...

Within all this yuk, and sickness challenge, I do have some GOOD NEWS!! 

At my last Dr appointment, also my Darzalex infusion day April 9th, the Monday after my party it up weekend, just before I got sick... I received good news regarding my IgA roller coaster.

IgA not down a lot, but better a little Down, than Up!

Yep, have to accept Dex steroids help beat up my type myeloma

I'm IgA Lambda, so this looks ok

Better too low, than too high

Still No M Protein detected!

Here's all my IG's 

I haven't heard back regarding my PET CT Scan... I think I'll send an email...

Ok, I feel yucky, so today's update is short and sweet. Thank you to all my invisible virtual readers for your interest in my crazy life story! Hoping your life is flowing smoothly, happily, rewarding and with as little drama as possible. I will never understand why things happen as they do... we don't always have a choice in what happens to us, but we have a choice in how we handle all our challenges... I choose to be as happy, grateful, analytical, and forward thinking as I can, when I can. Feeling awful definitely challenges me, and I can get really frustrated and hopeless, but when the fog clears, I'm back to my fighting spirit.

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

with someone or something as often as you can!

Caution... Not a Happy Post... Thank You Life Stealing Myeloma

4.14.18

My throat has been on fire for days. My head hurts. My skin hurts. My eyes burn and mist. My back is still seized from the PET CT Scan. My nose has gross congestion. I've gone through uncountable big boxes of kleenex. My face hurts from all of this. I know the evil cough is coming... I'm miserable physically and mentally. I feel so fragile...

It's a BEAUTIFUL warm, clear Spring day outside... blue sky, new green leaves on the trees, roses wanting to bloom, flies and bees beginning to buzz, happy doggies wanting to play, hens clucking they've laid an egg, my horses content just eating hay, not a care in the world...  I am so very grateful for ALL the good things in my life we've worked so hard for, and for all the other "advantages" I have in my life... But... always a But... I am so frustrated, so sad, so angry, so on the verge of weepy, for how Myeloma has completely stolen my life. Stolen my body, stolen my independence, stolen my spontaneity, stolen my options, stolen my immune system..., stolen my life as I once knew it.

What you wonder... has happened to the funny, optimistic, fighting Julie spirit?

What happened was I tried to live life, tried to have fun, tried to take a risk being just a bit normal, and I got completely sabotaged. Completely ambushed and laughed at by those cruel Myeloma cells circulating 24 7 within me, saying, "oh No you don't Julie", "hahahahha, we own you!" "Who do you think you are going out to a cootie contaminated public place to celebrate your daughter's 30th birthday". Ha Ha Ha! myeloma laughs at me... "Oh no you don't, Ms Immune Compromised, Neutropenic Cancer Patient, you're not "allowed" to get a PET Scan on Thursday, a birthday pedicure with my Birthday daughter on Friday, then go to a crowded, germ infested country line dance club Saturday night, then go to Sunday brunch the next day!" Hahahhaaaa, myeloma laughs at me. "Oh No you don't Cancer Patient Julie!" Nope, nope, nope, Julie", Myeloma snickers at me, "You're not NORMAL, and you will NEVER be again!, Myeloma laughs. Ha Ha Ha you incurable cancer patient Julie, with WBCs at 2.0 and ANC at .81, on Zarxio Neupogen shots!" What The Heck Were YOU Thinking!!! Ha Ha Ha Julie, you really thought you could step out and have a bit of fun AND NOT GET SICK!"... hahahahahahahhaaaaa, Myeloma laughs at me, jabs me, tweeks my back, sends daggers thru my nasal cavity, lights my throat on fire for days, and completely depletes me, stealing my soul, my optimism, my hope, my thoughts that maybe, just maybe, 2018 might be a year for a bit fun... Nope! No break from my ravages!", Myeloma laughs...

I just want to cry. Frustration tears. Disbelief tears. Sad tears. I constantly shake my head in disbelief. HOW DID THIS HAPPEN. WHY DID THIS HAPPEN. WHY ME. HOW COME. I remind Myeloma I gave my life to my family, to rescuing animals and humans. Giving my life to helping students become their best, finding their dreams, realizing their goals. I gave, and gave, and gave, thinking that when I retired, I'd be free to do all the things I wanted to do. I never had huge retirement goals. I've never had "materialistic" goals. I just wanted to own my own life. Eat when I want. Laugh and play with family and friends. Play outside, drink in all the beauty Nature has to offer us. Take care of my animals and those in Shelters. I always told my kids when "the time came", I would retire, and love nothing more than becoming their kid's Ranch Gramma-Nanny, while they were at work... Nope...

Thank you Myeloma for stealing my life, our dreams, plans, goals, freedom, health, spontaneity. Thank you Myeloma for putting a painful pin in my life's balloons of optimism. Thank you Myeloma for taming me with this awful sinus infection, seized back, giving me a reality check, that NO, I cannot function as a "normal" human being... ever again. Oh but I've tried so many times since diagnosis 8 years ago, and most of the time, you Myeloma, completely sabotage me, and let me know whatever I thought my "second half of life" would be, is not, cannot be, and is gone... forever...

My life now is being sick, avoiding sickness. Battling invasive bugs, battling mutating cancer cells.They're all out to bring me down.

Yes, I'll get beyond this awful bug currently humbling me. I'll buck-up, shut-up and be me again soon... Each day I'm a bit better since the cooties invaded late Tues, revving up Wed and then fully attacking with a fever of 101.9 when I woke up Thursday morning. I felt awful physically and mentally. I gave in, I accepted my status. Don't have a choice. I laughed-cried at myself every feverish, sore throat, head pounding, nose clogged moment. I just laugh incredulously at my daily Myeloma battle, and my crazy-thinking that I "could be normal" here and there. My entire purpose in life is just staying ahead of  Myeloma, one pill at a time, one infusion at a time, one injection at a time, one type of pain at a time.  And yes, as Myeloma patients go, my complaining is ridiculous in many ways, and my heart breaks for all those out there with serious myeloma immobilizing issues.

But for now, I'll whine, weep, be sad and angry... as I mourn my past health, and the journey ahead of me...

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

with someone or something as often as you can!

YOLO! Another Scan. Another Birthday. Taking Risks for Fun. Maybe Regrets Later!

Hello 4.8.18

So Much To Share! So many results and potential decisions to come! But today was my daughter's 30th birthday, so most of this weekend has been devoted to partying it up :))  I did something this weekend so completely out of my fear of cooties character, tossing my fragile (and current Neutropenic again) status out the window, and living a little crazy this weekend!
But first the headlines:

Thursday I had my first PET CT Scan, and that, and the low glucose, low carb diet, and fasting prep, was an adventure itself! Normally, I pretty much eat whatever and whenever I want, and I tend to be like my hoofed animals, doing a lot of "grazing", so this exact watching of Carbs and Glucose was Not Fun for me! I eat really healthy, trying to get something from each food group daily, but I also allow myself a cookie here and there, or fruit smoothies, or bread products, etc, so this 24 hours was an interesting experiment for me. Not awful, but I sure couldn't be like some that eat Carb free!

Almost time to gown up and go in!

And then I didn't do my math for the food-fast, in relation to my scan appointment time, so I wound up not being able to eat for over 16 hours! OMG, can't remember being that hungry in a very long time. The night before, I had dinner and stopped eating around 8pm, then when I got up around 8:30/9am, I realized the window for eating had closed, as I had to fast 6 hours prior to the 2:50 Scan. Then I was involved in the Scan prep, which included IV radioactive glucose prep for about 30 minutes, then the scan itself, so that brought me to about 4pm! So do the math on that... I hadn't eaten since 8pm the night before! Sorry if I'm sounding like a whinny wimp, but my system has changed so much since myeloma treatments, that I don't do well starving anymore.

Done!

But I of course survived and bolted to our favorite Deli after my appointment, and ordered half the entire menu for take out :)) Wow, I just did the math on that, and... help me out here... 8pm to 8am = 12 hours. Then only water from 8am to the end of the Scan, at 4/4:30 is another 8 hours. So if I can add, I fasted for 16 hours. Silly me, guess I should have gotten up earlier, and pounded down some food before my fasting window closed. But, ugh, I just can't eat first thing in the morning, when I wake up. Oh well, I survived and I WILL KNOW THE RESULTS OF THE PET CT SCAN TOMORROW, April 9th, at my Dr appointment, prior to my monthly Darzalex infusion.

If you recall from my previous posts, Myeloma's on the upward bound again, and I am VERY CURIOUS what the Scan shows, and what my monthly Labs show, and what our next move is, if Myeloma is continuing to misbehave! My preference is to go back to more regular Darza infusions, as I was doing so well on the bi-monthly schedule. I wonder why the researchers didn't include more instruction and protocol in the studies and literature for WHEN Darza stops being as effective on the monthly protocol.

Ironically, while I was in the Scan, I received email notification that my 21 days of Pomalyst had, predictably, plummeted my fragile immune system, and again I'm Neutropenic. Such a funny word, but related to our WBCs and Neutrophils. My WBC is 2.0 and my ANC a lowly .81. Boooo on that, but Zarxio Neupogen injections to the rescue!

Hello 3 days of immune system boost 

But........ here's where things got a little complicated for me...

During the scan, they wrap you up like a mummy and you have to lie perfectly still for the entire Scan! I'm not claustrophobic or nervous for things like this, but isn't funny how when you CAN'T do something, of course body wants or needs you to. So what wound up happening to me, is that I felt my back muscles becoming pinched. Normally one would just move a bit and readjust, but I knew I couldn't so I stayed quiet and still, hoping my back wouldn't seize. I felt stiffness when I got up from Scan, but felt walking to my car would loosen it up. Well the next day, it seemed to stiffen and pinch a bit more, and by Saturday, I was really really pinched and sore, and really began to limit my movement and bending over... 

But wait... could this soreness be Neupogen Zarxio related Bone Pain?? Oh boy, here we go agian... what symptom relates to which event or medication. I did shot #1 on Friday, #2 on Saturday and just didn't know if my tight and tense back muscles were Thursday's Scan related or Zarxio related. But dang am I so sore, stiff and Advil, Tylenol, didn't really have much effect in deadening the awful immobilizing pain. And what a time to have this, right in the middle of celebrating my daughter's big birthday! C'mon myeloma, can't you ever cut me a break?? So knowing we had BIG plans for Saturday night, it suddenly occurred to me, as I finishing up in the horse arena, hoping raking might loosen me up, it occurred to me to take one, just one 4mg Dex steroid pill as an anti-inflammatory. I NEVER take Dex late in the day, as I know it's effects will keep me up all night, but I was pretty desperate for pain relief at this point. So I took the one little Dex pill, and did get a little relief, but was still sore for Saturday night's festivities and still now as I write this... 

But wait... there's more dramatic news... 

Here's what I did so very very very out of character for me... and so very very very stupid and dangerous since I'm so incredibly immune compromised, and don't have an immune system to fight off all the awful human cooties out to bring me down... I tossed my normally unwavering avoidance of human crowds, and public places at all costs, and went to a Country Line Dancing Club with my daughter and her friends for her birthday! YES, WHAT WAS I THINKING!! Well I was thinking... I JUST WANT TO HAVE FUN AND BE NORMAL! I'm such a social person, that being restricted by myeloma's side effects really gets to me after a while. I feel like I am missing out on so much of life. So much of life that used I to participate in. But then again, I just hate being sick, so I just stick to being super ridiculously cautious 90% of the time, and it has really paid off, in terms of me avoiding serious illness. Here's my recent labs showing my compromised immune system:

Barely gettin by... 

Oh yikes, look at that ANC!

But I went, kept my antibacterial wipes handy, tried not to hug closely, did not shake hands, was super cautious with everything I did... but seriously, OMG, the crowd eventually became huge! Hundreds of people by late night. And as you know, being in a loud music venue, you have shout to talk or lean in when someone talks, and I just cringed thinking of all the COOTIES I WAS BREATHING. Yuk!!! ... If I remain well this week, after cootie incubation time, it will truly be a medical miracle! But we had a blast, I stayed out late, and laughed till my sides hurt, and my voice was hoarse, as my back continued to hurt like none other... 

This picture was early in the evening, when they were doing line dancing lessons, before the zillions of people eventually came. There wasn't even room on the dance floor, it was so crowded! So many people, so many cooties. But sooooooo fun with my daughter and her friends! When we got home, I couldn't wait to shower for hours, trying to drown the cooties, but of course that was too late, as just being there, I inhaled so much air borne yuk! I just kept shaking my head at myself, telling myself how stupid that was, especially right off Pomalyst, being on Zarzio injections, and so completely immune system depleted! Yep, I'm nuts. 

Just a few of the groupies, zillions more all around!

And then today, we all went out to brunch, but this was just a much smaller group, on an outside patio, fresh air, and I didn't do the beautiful brunch buffet. I didn't even go look at it, as I didn't want to torment myself. I order only well cooked food when eating out, avoid all fresh foods that can potentially contain unwashed or embedded bacteria, and don't do drinks from the ice machine, as I've read, heard that is swarming with bacteria... so far my persnicketiness has worked, as I am rarely sick, beyond the annual flu season challenges. 

Wow, I'm so lucky!! 

BFFs since elementary school :))

The panda necklace I'm wearing is vintage 1990ish.

Panda's were Alissa's theme since a baby xoxo

Happy Birthday to my baby girl xoxo

So my loyal readers and friends, those are just the headlines, as there's so much more detail within all this detail, but it's super late, 4.8.18 is over in minutes and tomorrow is a big day. I'm counting on hearing the results of my PET CT Scan, seeing my the results of my recent labs, telling of myeloma's status, then it's IV hook up time for Darzalex. And yes, I am looking forward to the "calm" of the chemo lab, where Benedryl might knock me out, as it battles back the roaring 20mg or 40mg Dex roids I'll take in the early morning. Many Darzalex recipients are anxious to try out the new shorter infusion time I've read is the trend now, but not me, I like the longer, safer, slower infusion time, not to mention, the possibility of sleep... 

Thank you for reading and caring about my life and story. Knowing you're out there, looking forward to my updates, gives me the motivation and commitment to keep on posting :)) Please let me know who you are, where you are, how you are, and how my posts impact or affect your life. I truly enjoy your comments, and you sharing your story with me!! 

If I have BIG RESULT NEWS, I'll post again before my next "on the 8's" :)) 

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

with someone or something as often as you can!

Hello Spring, Body Scans and Birthdays!

Hello 3.28.18

It's a beautiful Spring day today, and I am thrilled to be alive. Not feeling terrific, but not feeling too bad either. If you recall from my previous updates, Myeloma's on the upward move again, so last Dr appointment, we discussed raising the dose level of Dex steroids, Pomalyst, and possibly going back to more frequent Darzalex infusions. But if you know me, I put on the brakes, and opted to up doses one med at a time, so I am able to differentiate which side effects change or increase from which medication. 

Some might say I try to be too in control, or self "doctor", but no, I just want to know, in as much as I can, what is happening to my body and why. I'm analytic and a knowledge seeker. Just my nature. So we opted to increase the Dex steroids from 20mg per week to 40mg per week. I took the 40mg this past Sunday for my son 's birthday celebration, as I try to plan my "roid rage" for fun times, or when I can "enjoy" the extreme up, and blast of temporary energy I get. I also plan for the yucky crash, and make sure to not plan anything for several days after taking Dex. 

I'm so grateful to be here to celebrate another birthday with my amazing son. Who knew, I would be such a "medical miracle" and still be here 8 years later. Yes my type of IgA myeloma is complex and "high risk" - "aggressive", which requires constant, continual treatment, but lucky me, all the chemo and immunotherapy regimens I been on since diagnosis Dec 30, 2009, have been mostly tolerable, and Have Kept Me Alive.

I continue to be amazed and fascinated with all the variations of Myeloma, the variations of continual or intermittent chemo treatments, the wide variety of side effects, and the crazy life alterations all the myeloma warriors out there experience! Some are completely debilitated by myeloma. Some go years without treatments. Some are diagnosed, treated and go on with life for months, years without meds. Many like me, are on continual, constant myeloma killing meds. Some have extreme painful physical symptoms and side effects. Some blast through treatment after treatment, with little success. Some have extreme bone issues and bone pain. Some are diagnosed, treated, and sadly, their body fails them, and myeloma wins....  Myeloma is an awful cancer, yet so fascinating...

You haven't won with me yet myeloma. You haven't entirely stolen my life.
Look how lucky I am:

Happy 32nd Bday to my amazing son Scott!

Seriously, one lucky momma here :)) 

Alissa's big 30th Bday is next! 

Whoohoo! I made it! 

So my NEXT BIG NEWS will be on my next post, as I had a Bone Density Scan yesterday, and will have my first Pet CT Scan next week. I've had annual Skeletal Scans, and previous Bone Density Scans, but never a Pet CT Scan. I've had an MRI, but I think that was prior to my Myeloma diagnosis. I didn't realize the diet and fasting prep for the Pet Scan, and that they administer radioactive glucose. Hope my body doesn't freak out from that. If you've had one, please let me know how it went for you, and what it feels like. 

I have my next Dr appointment and Darzalex infusion April 9, so that's when I should know the results of all these tests, how the 40mg Dex is affecting myeloma's surge, and if I'll need to increase Pomalyst and or Darzalex too. Wouldn't it be nice if the scans show "nothing", and that my existing Lytic Lesions haven't changed, and there are no new ones, or no new bone deterioration. Wouldn't it be super cool if just Dex 40mg sent a message to myeloma, and my numbers plummeted. But who knows. I really don't "worry", I just wonder what my body is doing, why all this happened, and is happening, and what we'll do about any "bad news". It is what it is, and what myeloma does with me, I don't have much control over. But, thankfully, my wonderful doctors and I do have control over the attack plan...  Can you even imagine being on cancer treatments for 8 years... so unreal! 

Here's a wonderful article about Kathy Giusti, founder of the amazing MMRF! 

Hope all is full of Spring beauty and good things in your lives.

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

with someone or something as often as you can!

You Can Stop It Now Myeloma

Hello 3.18.18

Here I go again... thinking I wouldn't have any "interesting news" to share... but I do, I always do, thank you Myeloma.

My unrealistic, dream-world thinking is that this roller coaster ride will chill, and my life will "just get back to "normal"! Ha ha.
Yep, Myeloma is Forever. Treatment is Forever. Incurable is Forever.

This past Monday, I had my monthly Dr appointment and Darzalex infusion. But prior to Monday, I ventured out a bit, to a few tiny social events.  Now that it seems the worst of the flu season is passing, I'm getting braver about going out and about. I'm taking a few chances, that I didn't take in January and February. Although I'm always borderline Neutropenic, or fully Neutropenic, and could live in a "sanitized bubble" forever... it hits me:   I Have To Live. I Can't Wait. I Can't Postpone. I can't live hoping things will magically get better, or be different in a week, or a month. Now Matters. I can't postpone doing things any longer. When I feel halfway ok, I gotta get out there and live life.

So I went to a few events. Just out to eat events. Nothing big, like a germ free, medivac private jet to Hawaii lol. Minimal crowds. Just out to eat, celebration events with colleagues and friends. I mention this as I was later surprised and sabotaged by my ol volcanic GI acting up. Surprised, because fortunately I don't have days and days, weeks and weeks of surprise diarrhea anymore. I left that "behind" (lol) with Revlimid.

Yes, I've been a bit spoiled this past year with Darzalex, Pomalyst, Dex with a somewhat predicable "crash". Generally on infusion day, I'm fine, as I'm all loaded up on steroids. The following day I'm generally ok too. Sometimes though, late at night on Day 2, the "cleanse" begins, but for sure on Day 3, I know to stay home, close to "porcelain John". Then for several days, my body tries to process and regulate all the meds. I never know what to expect, regarding which side effects will hit, and how intense. Often by day 4, 5, 6, I get tingly, prickly, fever-ouchy skin pain, sometimes a sore throat, sometimes headaches, hot flashes, and always, always extreme fatigue.

But (lol) since I was on my 1 week Pomalyst break this past week, I didn't expect any side effect drama. Yet surprise GI drama came my way. I mention all this, as after each social event, I spent the rest of evening in the bathroom paying for it. Unfortunately, I was surprised by another "cleanse" Monday morning, right as I was trying to leave for the chemo lab! Why is all this worth mentioning... well, when I finally arrived at the chemo lab (a little late!), after taking a swig of Imodium at home to insure I wouldn't have any "disasters" on the commute there, I wound up somewhat dehydrated, and my nurses had a challenging time, finding a happy infusion vein. Three sticks later, the hydration bag is flowing, Benadryl is pushed, and soon Darzalex is flowing, an I'm fully "corked up" :))

Some of you reading this little adventure might be thinking, "Oh big deal Julie", "Myeloma has so many bigger challenges"! I agree, but because I hadn't encountered this for a while, it totally took me by surprise. I've recounted so many (scary hilarious) volcanic GI stories throughout this blog, that truly this recent reality was nothing in comparison, but it's a telltale sign of the news I found out during my Dr appointment...

Yes, myeloma's on the move. In the wrong direction. For several months now my IgA has been creeping up. As I make the associations now, it makes sense. I was sick in Nov, Dec, Jan. I've been more fatigued. I've had more side effects. Headaches, backaches, extreme fatigue, and now the diarrhea seems to be a thing again. All these represent side effects I experience when my numbers escalate. But to keep everything in perspective, the IgA climb is minimal compared to where it's been in the past, so I am not inclined to panic at this point.

So prior to my Darzalex infusion, my Dr and I discussed my upwardly mobile IgA, and what to do about it. If you've followed my blog for a while, you know I'm a minimalist and I don't like to treat "aggressively". I'm inclined to try medication changes gradually, and hopefully "preserve" their longevity-effectiveness, rather than go aggressive, high dose, and burn out my options fast. My Dr suggested upping the Dex steroids to 40mg, and upping the Pomalyst dose from the current 2mg and 3mg, to just the 3mg. What do you think I pushed for? Yep, one or the other, not both, as I always like to identify the minimum that works. If we change 2 things, we won't know if it's the Dex increase or the Pom increase, affecting things. Additionally, there is concern with high dose Dex causing glucose-sugar level increases, and I certainly don't want to invite Diabetes into the picture. We also discussed going back to bi-monthly, or every 3 weeks Darzalex. 

Fortunately my M Protein is still not quantifiable. 

And there's more... In addition to the 3 sticks to find a vein, my nurse also surprised me with a finger stick for my A1c, glucose-sugar level (I think this is what it's called?)... heck, I don't know, Diabetes has never been an issue for me, thank goodness. My level was 112, so I'm ok now. We'll see what 40mg Dex does this coming month. As a matter of fact, now that I'm writing this, I think I'll start today. Again, seriously not a huge deal to me, as for initial treatment in early 2010 forward, I was on... get this.. 40mg steroids, 4 days ON, 4 days off, for 4 months. I was in such "shock and awe stunned mode" back then, I don't even recall how it affected me. I think I was super functional on the 4 days On, but I do recall feeling quite yucky on the crash days. But before the crash got too awful, it was then time to pound down 40mg again, so I quickly felt ok again lol! And I've been on 40mg Dex weekly many times throughout my 8 years of treatment! 

Oh myeloma, you are quite the adventure. Quite the UNwanted adventure... 

It's always a party in the chemo lab! 

Karon, Karen and me

Finally, I started my monthly 21 day cycle of Pomalyst a few days ago, still at 3mg alternating with 2mg. I'll try the 40mg Dex steroids weekly, and we'll see in a month what myeloma has to say about this. Hopefully, high dose steroids will put those misbehaving myeloma cells in their place, and all will be ok for a while. If not, we'll see if upping Pomalyst or Darzalex is the next fix. What's your opinion? If anyone reading this has gone from the "normal Darza protocol" back to more frequent infusions, please comment and let me know your story, and outcomes. 

Although myeloma is on the upward move again, I always count my blessings and good fortune that I have the Quality of Life I do, and I'm here to tell about it 8 years later. Truly, my life is amazing, and I am so grateful for the high quality medical care I've had. Which reminds me, my Dr also ordered a Pet Scan and Bone Density Scan for me, so I'll be doing that in a week or so. Here we go again... I'll have lots to update you on in my coming posts. So I'l just shut my trap now... I'll always have news and updates. I'm A Cancer Patient In Treatment For Life...

This little pup is so hilarious, so innocent, so happy, so unaware of the seriousness of life! Found him destroying a feather duster last night. Looked like an Ostrich murder scene! 

So happy, so silly, so innocent.

Just love our newest little rescue boy :)) 

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

with someone or something as often as you can!

Marching Forward

3.8.18

Hello March! Yes, March already! It's Myeloma Awareness Month. When I was first diagnosed, not many people I encountered knew what Multiple Myeloma was, (me included). But as my 8 years living as a myeloma patient have passed, I meet more and more people that have heard of myeloma, or know of someone diagnosed with myeloma. As I write this, I shake my head, forever having a difficult time connecting me to myeloma. It will always be an out of body experience for me. Still don't get how it found me...

https://www.myeloma.org/

I did Labs yesterday, and will find out my myeloma stats on Monday March 12, when I have my next Dr appointment and Darzalex infusion. But I am able to see my CBC stats, organ function stats, and my Beta2 Microglobulin online. Here they are:

Most of my CBCs are pretty good, except of course my WBCs. 21 days of Pomalyst, 20mg weekly of Dex steroids, monthly Darzalex, and of course the ravages of myeloma, do my immune system in.

Additionally my ANC is pretty low at 1.4, but hopefully not Neutropenic status... we'll see if my Dr recommends Neupogen Zarxio shots for a few days...

And finally, this was a tiny happy surprise, with my Beta2M going down .1
Not much, but I'll take any downward direction that comes my way :)
Crazy how high it was in 2009 at Dx @ 4.6, then in 2016, @ 4.7, then 4.6 just last year, prior to starting Darza, Pom, Dex! Still outside the "normal" range, but staying steady low-high for a year now, thank you triplet cocktail. Where did you come from myeloma, and how did you find me... Grateful for 8 years and counting, and for the "relative good health" I do have. Fatigue debilitates me. Headaches surprise me. Aches and pains annoy me. But thankfully I don't have the extreme GI issues I did with my previous treatments.

Life is busy with our new little rescue, who is more of a puppy than I expected. So adorable, so full of life, so healthy, so happy, so jumpy-bouncy, so much joy to share. He's doing great with potty training, as long as I make sure to let him outside regularly when he's inside. At night, I have him cozy in a soft tent-crate, and he seems to love that, and sleeps all night without a problem. When the weather's nice, all the doggies are outside for most of the day, so that makes it easy and natural for them.

I took little Jack to the Vet for his complimentary shelter rescue health exam. So funny how my life is so medical oriented on so many levels. He did great, and is in excellent health. Isn't he just so cute in his doggie seat-belt harness :)

Perfect little traveler and patient

Live happy, live well, and make a difference somewhere, somehow, 
with someone or something as often as you can!

Happy 1 Year Anniversary to Darzlex, Pomalyst, Dex!

Hello 2.28.18

Unbelievable coincidental anniversary for this "on the 8's"post today!
Exactly 1 year ago today, February 28, 2017, I began Darzalex IV infusions.
Rather than recap my first Darzalex infusion story on this post, here's my post from Feb 28.17 and Mar 1.17 . For those of you that are not familiar with Darzalex- Daratumumab, it is an IV infusion spread over 2 days for the first initial infusion. This is done to prevent and avoid severe infusion reactions.

"DARZALEX^® is a monoclonal antibody that works in several ways. One way this monoclonal antibody works is by attaching itself to multiple myeloma cells in your body and directly killing them, and/or allowing your immune system to destroy them.

DARZALEX^® targets and attaches to a protein called CD38, which is present on the surface of certain types of cells (eg, red blood cells) and is also present in high numbers on multiple myeloma cells. Since DARZALEX^® targets the CD38 protein, it may also affect other cells with this protein on their surface."

I'm thrilled to report that I did quite well with my initial infusions, and have been ok this past year, thank you Darza, Pom, Dex :))

Here's what myeloma was doing to me before Darzalex, Pomalyst, Dex:
(Mid to late 2016 was when I became refractory to Kyprolis Dex)

And here's where I am a year later:

I'm still surprised that Darza, Pom, Dex is continuing to hold myeloma's power over me to a minimum. Since I became Refractory to Kyprolis Dex mid 2016, after just 10 months or so, I was not holding my breath that this triplet would outsmart myeloma for an entire year. I've been even more surprised how well I'm doing, since the "required protocol" is a reduction in dose of Darzalex from 8 weeks weekly, to 8 weeks bi-monthly, to monthly now. Yes, my IgA has jumped a bit, but nothing like what it did in 2013, 2014, 2015, 2016. We'll see what my next labs in March bring. So it's Happy 1 Year triplet cocktail success Anniversary to me!

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

For those of you that follow my blog regularly, you know we lost our beloved big cuddly blonde Labrador doggie Pawsy to liver cancer at the beginning of the month. He left such a hole in our hearts, our life, the doggies, and our ranch is just not the same without him here. He was such a gentle loving soul, and just so irreplaceable... Not that I try to "replace" our critters when they pass, but we have always had a buddy system here. I just believe that animals are happier when they have a buddy of their own kind. I am a committed believer in Rescue, and always look to save a life, when one of ours passes on. Although we have 2 little doggies for company for our big doggie, we just have always had 2 Bigs outside. As a result I have relentlessly looked for a new Big for Abbie... to no avail. Sadly so many dogs have serious "behavioral issues", and with my and my husband's health issues now, I just can't take on the responsibility of rehabbing a big dog with issues, as I have in the past.

So in the process of looking for a Big... look who I found...
or should I say... look who found us!

We've visited several Shelters over the last several weeks, looking at many Big doggies. So many need homes. So many sad cases and sad faces. So incredibly heart wrenching! But while looking for a a Big, look at this Little that found me. That Face! Those Eyes! I wasn't going to give in, as we don't "need" another Little, but how could I resist this face, saying "Pleeeeeese don't leave me here"....

Pleeeeese Take Me Home

Look how adorable I am! 

I'm just a young lost stray boy needing a home

So what do think I did... 

Yep, put my name on his "Commit to Adopt" list. If the owner doesn't show up after a week, he becomes available on his release date, after his neuter surgery. The next day we went to visit him for a "meet and greet", and he completely stole our hearts. Pawsy must have "connected" us all together, knowing this little guy needed us... He's just a mini version of Paws. So uncanny. Just such a cuddly, playful love!

The following day, the little guy was neutered and we were able to bring him home! 

 Freedom Ride for "Little Jack"

Such a love bug! So grateful.

Happy lil boy

We love him so much!

And he fits right in with the Pack!

Here they're "sniffing for kibble", 

A game I play with the doggies, 

where I sprinkle their kibble on the lawn

and they get to "hunt" for it 

So that's my February 28th story for you. 

Darzalex, Pomalyst Dex has been an amazing success for me for an entire year, even though I become Neutropenic and very immune compromised almost each month. But living in a bubble and being super cautious about cootie contamination, is an inconvenience I tolerate to stay alive.

Although we lost a precious life this month, we saved a life that needed us.
I hope your February was good to you, and March brings happiness, health and smiles to your life. 

Live happy, live well, and make a difference somewhere, somehow, 
with someone or something as often as you can!

Myeloma on the Move

Hello 2.18.18

Did you see my surprise, not on the 8's previous post :)) Due to "popular demand" lol, I posted my update on the 14th for you. I had my Dr appointment and Darazlex on Monday Feb 12, and learned "myeloma's on the move" again. Not huge, but a warning my warrior cells better get it together. As you can see (or saw), IgA is up about 200 points.

My IgA type of myeloma has always "roller-coastered", and often quickly escalates super high, but also responds to treatment quickly too. Pretty shocking that my IgA was over 4100 a year ago, so my current 715 is just a "head's up" that perhaps monthly Darzalex is "too weak" a treatment for me, and hopefully I can go back to 2x per month. I also committed to taking my weekly 20mg steroids consistently, as sometimes I "cheat", and take less. I've done this previously, as I had hoped that less Dexamethasone would suffice in taming myeloma, since there are so many side effects from continuous use of steroids. I've been on Dex steroids continually since mid 2013 now. 4.5 years!

But so far my body organ and blood chemistry labs are good, and I'm careful to watch my carbs and sugars, as I certainly don't want to become Diabetic from all the steroids :(( The other good news from my recent Labs, is that my M Protein is not measurable.

IgA up from 519

Looks ok. I'd rather be low, than high

Thrilled to be holding steady on the "No" M Protein!

And finally, doing several days of Zarxio (Neupogen), took care of my Neutropenia quickly, and I went from a low of .8, to in the normal range of 2.97 . I am still VERY cautious, and live as if I'm Neutropenic all the time. Just too many cooties out there for this immune compromised cancer patient! 

Our hearts are still so sad about losing our adorable white Lab doggie Paws (see previous posts), and I've been looking continually online for a rescue Labrador that needs a home, but sadly we haven't found a match yet. There's also a part of me, with my and my hubby Jim's continuing health issues, I'm thinking that "less is more" at this time of our lives, and maybe we'll just stick with the 3 girls. But then again, I want to rescue another life, that needs a home, as we have always done...

3 happy girl doggies

Abbie misses Pawsy, but she's enjoying being inside

2013, after a doggie event, 

and just before, or as myeloma was roaring back

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

with someone or something as often as you can