Scans and More Scans

5.7.17
Hello May!

So where did I leave off... not sure, thanks to continual "chemo fog"!

Darzalex, Pomalyst, Dexamethasone are doing their thing... I hope.. as I really don't know. Last "myeloma marker" labs were 4.13.17 and things looked pretty good then. But that was when I was doing this awesome Triplet Cocktail weekly. Per Darza protocol, I began the every other week regimen this past Tuesday, May 2. Things went ok, but I have to laugh about the crazy bi-polar experiences my poor body goes through.

I pre-med at home with 20mg Dex Steroids, first thing in the morning. Then I'm additionally "pre-medicated" at the chemo lab with a Big Bag of Benadryl and Tylenol pills. When I arrive at the lab, I'm full of life, actually feeling semi normal, and not in too much pain or GI distress. But when the Benadryl meets the Steroids, oooooo boy, it's woozy woozy time, combined with the hyper-bounce from the Steroids. Hello bi-polar reax inside of me lol. I was chatting with my chemo friend Josie/Josephine, supporting myself on my IV stand, when I felt myself getting dizzy and woozy physically, and mentally woozy foggy. It was a weird feeling, going from ok, to drugged up. I finally gave in, and went back to my chemo bed, as I didn't want to pass out and be dramatic. It really is amazing how medications/drugs impact our bodies. I never did much medication prior to my myeloma diagnosis, so all these side effects taking over my body, is still very strange to me.

Tuesday, Wednesday is still ok for me, as the meds are still romping around inside of me. But late Wed I begin to feel a bit icky and bloated, but not too awful. Thursday I definitely begin to wane, and often the GI stuff begins. But this Thursday, I managed to hold it altogether to attend a fun Relay for Life event. Crazy how many myeloma people I now know in my area. 2 of the ladies in this picture (in addition to me) have myeloma, the others are breast cancer survivors:

The Faces of Cancer

Crazy, right!

So by Friday, I really have waned, and the achiness begins. It's like a slow wave or fog creeping into me and onto my skin. I begin to feel like I'm getting "sick" with a flu or fever, then have to remind myself, "O yea, it's Tuesday's "revenge" invading. I feel sick, but I'm not "illness sick". My skin aches, my head aches, my body aches, I have metal-mouth. Fatigue moves in, and I just feel overall lifeless and yucky. I feel bloated, and know what that means... hello porcelain throne for a day or 2. So I've learned now that this chemo cocktail has a slower, more delayed crash, then Kyprolis back in 2015-2016.  Since this crash comes several days after my infusion, it actually fakes me out at first, creating an illusion of thinking I might be ok... then boom, extreme fatigue, yuckiness, sleeplessness, loss of appetite, aches, pains, and just an overall feverish-flu feeling. Then slowly, days later, the side effect fog lessens, and I begin to feel a bit better by Sunday. But dang it, today I tweaked my left upper shoulder/neck area and have a stiff neck, achy shoulder. But I laugh, as I can't believe the day I should begin getting a break, I get zapped by a random muscle ache. But hmmmm, maybe not so random, as I get these achy muscular, nerve things often now...  

I managed to take my "Skeletal Bone Survey Scan" on April 25. I knew I wouldn't know much until my upcoming Doctor appointment on May 16, which is also my next Darza infusion. So I wait and wonder.., wondering what the xrays will reveal. My last scan like this was a bit over a year ago, so I should have done this sooner in the year. I let the Rad Techs know of a few areas I was a little concerned about, and they made sure to scan most all of me from head to calves. See, back in 1998, I had a benign "Neuroma" tumor removed from my right side neck, shoulder, clavicle area. I remember for years feeling this weird bump clunking into my collar bone. It eventually grew to olive size. When I alerted my GP, he quickly scheduled me to have it biopsied. OUCH times a million! I remember it was so incredibly painful, and I totally did not expect the intensity of pain when the needle pierced the lump bump. Owwweee! Silly me, I had planned meeting family and friends for lunch after the biopsy, so clearly, I had no clue what biopsies felt like back then lol!!!  Fortunately the lump was determined to be Benign. I had surgery a few months later to remove it, as it was bunch of nerves growing into the tumor, or the tumor was a bunch of nerves, so the Doctors were worried it could eventually cause right side dysfunction and a variety of nerve damage issues, beyond the immediate area. I recovered just fine from that, but still have some weird twinges in that area, but the tumor never grew back.

But sometime after that, I noticed I had a pea size bump on my right side skull, a few inches above my ear. Again, didn't really give it too much thought, but over the years it's grown ever so slowly to blueberry size. Yes, I've shown my Drs this over the years, but no one seemed too concerned, as it didn't seem to be growing fast and didn't cause me any discomfort or pain. I mentioned this to the Rad Techs, so they would make sure to image that area. I do think "something might be up", as I received a call from Radiology that my Dr has requested another type of scan for me. I'll call tomorrow and schedule that... Yep, the myeloma ride continues.. on and on and on. I just can't catch a break... 

In middle of all of this, I managed to attend the annual City of Hope BMT/SCT reunion. My myeloma buddy Gary (my neighbor, believe it or not!) and I went together. Big event. Big media event. Big celebration for hundreds, thousands of families, survivors and all of the medical staff members in the BMT SCT department. Quite a special event annually. I went through my blog and pictures and found most all my SCT reunion pictures. 2010 to 2017, pretty remarkable huh! Sometimes it really hits me how amazing it is, that I am still here. I never thought I wouldn't be, but that was my minimalist denial side. The more people I meet, the more I read, the more myeloma groups and stories I read, the more I realize how remarkable it is, what I have been through and continue to go through. Some have it so much "worse" than me, and some have had remissions without treatment for years and years. Myeloma morphs so differently for everyone, and am really beginning to fully grasp what my form of "high risk" myeloma means. I get "bad" fast, but I respond to treatment fast. Then I become refractory to the treatment, have to formulate a new treatment plan, get better, then get worse. Then get better, then get worse. 7 years of this... wow...

 Yippee!

Celebrating year #7

 Myeloma buddies, Julie and Gary

 Dr Farol and me

He will always remember that I was the only patient

that "never unpacked my suitcase"

during my July 2010 SCT :))

 Gary, Dr Farol and me

 My big cheese

Dr Spielberger and me

2017-  Look at all those BMT SCT Survivors!

2016

2016, my 6th year reunion

I did not attend as it was pouring rain that day

2015

2015, my 5th year reunion

Me and Dr Spielberger, cupcakes in hand

2015

Dr Farol and Dr Chai

2014

2014, my 4th year reunion

Dr Kogut and Dr Spielberger

(Still looking for my 2013 reunion picture

which would be my 3rd year reunion)

2012

2012, my 2nd year reunion

2011

2011, my 1st year reunion

visiting the hospital floor where I stayed all of July 2010

2010

July 5, 2010

Ground Zero

The moment my stem cells arrive

and one of the reasons I am still here

And finally, here I am with my daughter

July ?, 2010, a few days after high dose Melphalan

and infusion of my stem cells... little did I know what was to come..

Yes, I have survived 7 years of myeloma treatments, and I have no idea what's coming down the train track for me. Not sure if the cancer train is headed away from me, or coming right at me. I'll be sure to let you know what I find out regarding what is found on the Scans. Not even sure what type of additional Scan they want to do on me, but I'll know that when I call tomorrow. Until then, I battle forward, always optimistic, with a touch of denial, a pinch of WTF, tons of gratitude, and continual bewilderment that am in the situation I'm in.

 Hello from Birdie!
Here's Birdie's Blog :) 

Hello from the chemo lab-

Thank you friends and strangers

for reading, caring and commenting.

I love hearing your story too.

Great Darzalex article, interview!

Read these Myeloma Beacon articles and personal stories 

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

Mystery Status!

4.27.17

Hello everyone-

For the first time in a long time, I don't have any dramatic news to report, as I'm waiting to receive my dramatic news! See, this was my very first week without Darzalez! Protocol for Darza is weekly infusions for weeks 1-8, then beginning with week 9, we get a break and begin infusions every other week. So who knows if myeloma is still being pummeled, or this treatment break may be fueling myeloma's power? I have no idea, as I was not "required" to do my regular weekly labs, since I had Tuesday off from Darza. Doing weekly labs has become like a "security blanket" for me. I really look forward to knowing what story my blood will reveal weekly...

But alas, I'm not chemo free, or on a full treatment break, as I began my current 21 day cycle of Pomalyst, a week ago. But with my looooow CBC's, we opted this cycle to alternate Pom 2mg with 3mg. So again, it's a wait and see how this reduced potency affects myeloma's powers. Additionally, since my myeloma markers from earlier in the month were so impressive, we've downsized Dex from 40mg per week to 20mg per week, with the option of 4mg on a day or two following Darza, if my side effects become overbearing. But I must confess, I haven't taken my friend Dex yet this week, as I packed a few appointments and events in this week, and couldn't figure out how to do these things, knowing the Dex crash would hit in the middle of my plans. I'm laughing as I write this, as it all seems so surreal and absurd!

Seriously, how crazy is it, living day to day, week to week, month to month, etc, having little control over what's happening to me with side effects, and not knowing if cancer is revving up, staying the same, or still running scared from treatment.  If I could, I would have blood tests weekly for the rest of my life, as that's really the only way I know what's happening internally with me. There are times when I feel ok, and think I am doing well, and think my status is stronger, only to find out, that's not the case. And the reverse, there are times when I feel lousy and think I must be headed in the wrong direction, and I find out that I am actually doing ok. No doubt myeloma, you keep me on my toes, with no room to relax. 

Tomorrow is the annual SCT - BMT reunion at City of Hope, where I had my SCT July 2010. I'm coming up on my 7 year SCT birthday-anniversary. Wow! And this event is huge. Hundreds, but looks like thousands, of people attend. It's a pretty big media event too. And our amazing doctors, nurses, hospital staff etc also come, to celebrate with all the patients. They give us big buttons with our survival months or years noted, a Tee shirt commemorating the event, and host a huge luncheon with speakers and entertainment. Very cool event. Couldn't be on a Dex crash for that, right!

 Here I am at my VERY FIRST 

SCT Reunion, April 2011

Look at that crazy hair growing back
after my October 2010 buzz!

Finally, adding to the list of unknowns, and compounding my "Mystery Status" is the outcome of my long overdue Skeletal Survey - Bone Scan that I FINALLY did this past Tuesday. So I took advantage of my little Darza vacay Tuesday,  and I went for the  bone xray scan. Yes long overdue, due to me. My Dr had scheduled me for that way back in December, but with not feeling well from crazy side effects of escalating myeloma (before Darza's success), I hadn't felt like doing it. I know, geeezzz, not a huge deal, but actually it was, as myeloma's chronic fatigue can be disabling. And I was having side effects from Velcade, higher dose Pomalyst and high dose Dex, etc... Anyway, I did the scan on Tuesday, so the waiting game begins. Will the scan show solid healthy bones, or will I be thrown another curve with bone lesions? Plasmacytomas, I believe is the official term.

My next Darza infusion is May 2, so I'll do labs on May 1. Whew! Status check coming soon! But my next Dr appointment isn't until May 16, to discuss EVERYTHING, and find out how I'm doing with this new protocol of a week's vacay from Darza, and to find out the results of my scan. You think I can wait that long for the results? Nope, you guessed right. I'll be pestering my nurse on May 2 to consult with my Dr in advance :)) I let you know, when I know, when all these myeloma Mysteries are solved...

No matter how ridiculous my situation is

Nature always reminds me how fortunate I am 

To Be Alive!

Hello perfect little ladybug!

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

Hello Neupogen/Zarxio- Let's Pump Up This Immune System, plus Good News Stats

4.17.17
(Updated below!)

Hello everyone, and thank you for reading and following my crazy adventures. I have a Dr appointment 4.18.17, so I will update you with all my recent stats tomorrow, and tell you about my crashed immune system and getting Zarxio for 3 days in a row this past week. Thanks for checking in, and see you tomorrow with numbers!

4.18.17 UPDATE!! NEW NEWS!!

Hello again everyone- been a busy last couple of days. As I've written before, I often think I won't have much to say from post to post, but sheesh am I wrong about that. Seems like so much happens in my MyelomaVille life in just 10 days, between my "On The 7's" posts. Here's what's been going on:

My WBC (White Blood Count) crashed to 1.7 (Normal range = 4 -11) on April 10. Most likely a result of my 3 week standard course of Pomalyst. Unfortunately, this pill form chemo/immunotherapy wreaks havoc on my fragile immune system, so my Dr put me on 3 shots of Neupogen/Zarxio last week. Yippee, as I do just fine on these, as I am so short on WBCs (White Blood Cells), I don't have the "crowding" and painful bone pain many report when on "granulocyte colony-stimulating factor (G-CSF), filgrastim". Fortunately, this brought my WBCs up to a whopping 2.0 and then 2.8 (Normal range = 4 -11), from yesterday's labs. My Dr was very concerned that my ANC (Neutrophils) had dipped to Neutropenic status, (I think she said .99, but I didn't see that on my lab report), so that was another reason she offered me the Zarxio shots. I am now a "whopping" 1.28 (Normal range 1.80-7.70). When I say "whopping", I am of course being sarcastic, as I am sadly very Immune Compromised, and try to live as "Bubble Girl" when I can lol. So that's the "Bad News".
READY FOR THE GOOD NEWS?!

 My chemo buddy Josephine-Josie and I

entertaining ourselves, the lab staff and guests with our antics.

Can you imagine being on chemo, bounced up by steroids,

and slammed down by Benadryl?! Pretty funny combination that causes

hyper-ness and sleepiness all at the same time lol

And now the GOOD NEWS:

THANK YOU Darzalex, with Pomalyst, and Dexamethasone, you are pummeling Myeloma!

Seriously! 

From a high of 4130 to the current 527

Still abnormal, but Wow!

Even my IgG is coming up ^

My "sorority" stats are good too ^

Although I am still "Abnormal" (lol, yes in many ways), 

my M-Protein at recent labs "Is Not Detected"!

Previous M-Protein spike was as high as 3.6 in February!
and now... wow, just wow, 
Not even on the scoreboard ^

 

 This test and result is new to me

Will have research this one ^

 Current CBCs

A mixed bag, but not too shabby.

Now this one I will have to research too, 

as I wasn't wanting to join the IgG Kappa sorority.

I remember reading how Darzalex affects IgG

and I was a bit concerned about this, as I'm IgA myeloma...

I previously found a reference to it here

Here I am checking in today, bright and early (for me)

at 8:50am for my Dr appointment and 6-7 hour treatment.

Today is infusion #8

Can you believe that!

How time flies when your weeks are taken up by

cancer, chemo and side effects-

Thank you Dex steroids for propping me up
and making me feel ok once a week!

 The amazing check-in ladies

Arcie and Robin.

They've been the smiling faces, 

wonderfully caring ladies, greeting me 

for 7 years now. Just loooove them!

And here's my new Darzalex schedule-

protocol is weekly, for weeks 1-8, 

then reduces to every other week for weeks 9-24,

then reduces to monthly until "disease progression" or

I become "refractory" to it and have to hunt for another treatment.

My life!

Yes, this is my life. I have cancer. A cancer called Myeloma. A cancer I knew nothing about until December 30, 2009. A cancer that has taken over my personal life, stolen my career, limited me in ways that are so profound, I can't even comprehend it. I am still in disbelief and denial. Even on treatment days, when I check in, consult with my oncologist, and check into the chemo lab for 6-7 hours, I still feel like this an out of body experience, and I am just "posing as a cancer" patient, an "imposter" going through the motions. But when I'm "invited" to the chemo chair or chemo bed, my IV needle inserted, medicine bags with my name on it hung, drip drip goes the infusion into my veins... reality of my status does slam me. When I chit chat with fellow patients and we exchange our respective "horror stories", reality does hit me. When I "coach" new members of this "unwanted club", and unwittingly sound so knowledgeable, reality does hit me. When I mention I have been doing this for 7 years, and will continue doing this for my "forever", reality does hit me. Other's shock and awe of my status, of my continuous treatments, of my incurable cancer diagnosis status, then the impact of my situation hits me.

When I view and discuss my Labs, reality hits me. When I consult with my Doctors and Chemo-Pharmacists, and they are very concerned and serious, reality does hit me. When the term "high risk" references my status, reality hits me.When my myeloma morphs, mutates and outsmarts my treatments, and my cancer stats escalate, reality does hit me and hits me hard, and I get scared. But today, I am encouraged and have new hope for additional successful months with Darza, Pom and Dex pummeling this monster within me. Myeloma patients just hope and pray our treatments continue successfully, buying precious time..., hoping the amazing medical scientists and researchers continue to develop additional meds to treat this stealthy, sneaky cancer, that will always outsmart and return with a vengeance. It's just a matter of time...

It's a strange and scary feeling, that my life is entirely in the hands of others, that my life depends on highly complex scientific molecular and cellular knowledge that I barely understand. It's overwhelming that my life entirely depends on targeted chemicals coursing through my veins, joined by pills cunningly circulating in my blood stream, their mission to annihilate cancer cells, and to keep me alive. Imagine wondering if this internal chemical warfare will last months, or a month. Imagine wondering, always wondering, treatment to treatment, blood test to blood test, if my personal "Team Pummel Myeloma" can outsmart and out chemical myeloma. Imagine living day to day, wondering... wondering when the myeloma roller coaster will jerk me in that "other direction".

Yet, I remain hopeful always, as I Want To Live... for a long time! 

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

Thank You Medical Science, and Brilliant Researchers! You're Saving My Life!

4.7.17
Hello to Hope and Successful Treatments!

If you've checked in here, between my "On the 7's Posts", you're up to date with all my good, and crazy news. I don't have any new dramatic news since my April 1st, "NO APRIL FOOLS JOKE" post of amazing treatment success and crazy side effects. Truly, I am still in shock how fast Darzalex with Pomalyst and Dex steroids have brought my IgA and M Protein down. I am so very grateful to all the brilliant medical scientists and researchers working on medications to treat myeloma and I am so indebted to all these brilliant minds that work so diligently to keep us myeloma patients alive!
I do however, temper my excitement with myeloma's reality, that this treatment will not last "forever", but I am thrilled my body and this "monoclonal antibody" is able to outsmart myeloma, at least for now.

Here's my incredible results again:

 Yes, your eyes do not deceive you!

Of course, my levels are still "Abnormal", as my test result sheets scream at me all the time. But seriously, from "death's doorstep" Nov, Dec, Jan, Feb... this is incredible beyond words. My Doctors do remind me of my "high risk" status, as I tend to respond well initially, then boom, myeloma quickly outsmarts, mutates and wins again. But, today, this week, this month, I am beyond grateful for my status.

I won't "complain" about all my crazy side effects either, as I have fully blabbed about those in my previous posts. Nothing has changed with that, and I "cowgirl up" and suffer through my pain. Darza infusion #6 was Tuesday, so I felt ok Tuesday and Wednesday. Thursdays I wake up dizzy, ditzy, groggy, mentally fuzzy, puffy, swollen and achy. And that continues and worsens throughout the day, night. Fridays (today), I wake up even more dizzy, ditzy, blurry, groggy, fuzzy and the nasty fever-like nerve pain begins. But I keep reminding myself of how well I am doing on a molecular, cellular level and I push through. I am very grateful to be here to tell you my story.

Lost another dear friend and colleague~

Here we are late last year, 

battling together at the Chemo Lab. 

Armida lost her battle this past week, 

and I am so sad for her and her family. 

Stupid, worthless cancer... 

But life moves forward, and I take one day at a time, doing what I can on the few "good days" I have. I've needed to take one of our kitties to the Vet, but just haven't had the helium to do so, but her URI became concerning, so I was able to get an appointment on Wednesday, knowing my "crash clock" was ticking. Look what someone had brought into the Vet's office. A box of little baby opossums, who's momma was hit by a car. Thankfully, still many loving and compassionate people in the world. The babies are being taken care by a wildlife rescue. 

 Awww baby opossum

I know, you're worried about me handling wild animals and getting cooties, germs and diseases. Well by now, you know I worry much more about human contaminates, not animals, as they are so clean! Humans... not so much lol. Yes, I scrubbed up, and washed well after handling the little cuties! 

And yes, I still "drag" myself out to the arena, every day I can, for just a bit of exercise, picking up "horse apples". It's really the only exercise I get, except for walking to and from my car, to my medical appointments, and on good days, I even take the stairs! I try to move around each day, no matter how awful I feel. I am "tormented" by the Spring beauty around me, wishing I could run through the fields of Poppies in bloom, or hike the horse trails behind me, or just take a walk down the road like I used to... but I accept my reality, and accept that "Less is More", and do what I can, when I can.

I laugh at the ironies of my life. I look to the heavens, and quietly yell at the "universe" for my predicament. I marvel at what I have been through since December 30, 2009, and take deep breaths of appreciation for the life I do have. I am here, I will fight to stay alive, and I bear with that which is tossed my way.
I am not afraid of dying... I am afraid of not living...

Mr Boots says

Thank you for reading and caring :))

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

NO April Fools Joke... This Is For Real!

4.1.17

"April Fools' Day (sometimes called All Fools' Day) is celebrated every year on April 1 by playing practical jokes and spreading hoaxes. The jokes and their victims are called April fools. People playing April Fool jokes expose their prank by shouting "April Fools"! Some newspapers, magazines, and other published media report fake stories, which are usually explained the next day or below the news section in small letters. Although popular since the 19th century, the day is not a public holiday in any country." (From Wikipedia)

So with a loud cheer and a huge smile on my face, take a look at these results, and THIS IS NO APRIL FOOLS JOKE! I'm still in shock! :))

IGA!!!

M PROTEIN!!!

LIGHT CHAINS!!!

So even though I have been really challenged with crazy side effects, I would say that it's all worth it, right! This week began with extreme fatigue and surprise diarrhea, but my friend Dex steroids quickly took care of that on Tuesday into Wednesday. I crashed late Wed and into Thursday, Friday. I feel I little better today, but "ache" like I have a mini-fever or sunburn, the diarrhea is starting lol, and I have extreme fatigue, but overall, it's better than it's been all of March!

I have completed 5 Darzalex infusions so far, beginning Feb 28.
First infusion was just Darza and Dex.
Second and Third Darza infusions we tried with Velcade subQ shots (and Dex), but the crazy "pseudo fever" skin pain was unbearable, so I quit that.
Fourth and Fifth Darza infusions were with Pomalyst at 3mg (with Dex).
Fortunately, the ouchy skin side effects lessened just a bit just this week. Pom causes extreme fatigue and no helium, but this cocktail combo is better than what I experienced with the Velcade Darza combo. But now that I am several weeks into Darza, I do believe the ouchy fever-like skin pain is Darza, so perhaps Velcade may just be my friend down the road.

Needless to say, I am beyond thrilled with my current Myeloma stats. Pretty incredible right?!! I always seemed to respond well to the meds and treatments, so when my numbers began to soar, I was truly concerned. I know eventually Myeloma will outsmart Darza and Pom, but I sure hope I get many many months of treatment success. To be honest, at the end of 2016, beginning of 2017, I was getting scared. I wondered if my skyrocketing IgA and MProtein meant the "beginning of the end"... It's a crazy way to live, knowing that if your body does not respond to treatment... that's it...

Thank you magical bag of Darza

coursing thru my veins.

outsmarting and killing those evil myeloma cells!

Here I am at 20ish

I will always wonder 

when Myeloma invaded...

Read this! ^

Thank you for reading, commenting and caring! It means a lot to me that you care and appreciate my posts! Let me know how you are too!

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

D is for... too much toDay

3.27.17

And just when we think we can predict...
Ha Ha laughs life...

Got up early, took some Dex steroids, as that's what I have done to begin pre-meding for Tuesday's Darza infusions. I haven't had any relief all week from the ouchy fever-feeling nerve pain. I just feel awful. My thinking: Dex to the rescue! No I haven't been actually "sick", thank goodness! My body just feels sick, like when one has a fever. Ouchy skin. And the fatigue. Ugh the fatigue. I just feel sick all the time now, but I am not sick. Not flu sick. Not stomach flu sick. Not sinus-cold sick. Just tired, fatigued, ouchy fever sick, WITHOUT the fever. Yippee Dex steroids to the rescue.

Got up, took 4 little pills with a Vanilla Ensure, and water, and was going to go back to sleep for an hour. I knew I didn't have much time this morning, as I was due downtown at 11:00 for my SCT Dr appointment.  I just wanted the roids to kick in, and make my achyness disappear. And then it happened. My stomach started rumbling like it hasn't rumbled in a long long time. Hmmm, what's this feeling I mused. Pomalyst, are you becoming my Revlimid? Are we going to have GI adventures again? Will I be prevented from going places due to crazy unpredictable diarrhea? Deja Vu 2013, 2014, 2015? No, all is well, false alarm. I still have a bit of time to "relax" before getting up and leaving.

Oh, yea... surprise, surprise: Hello GI issues again. Hello diarrhea that prevents me from leaving the house, getting on the freeway and getting to my Dr appointment. Ha Ha, laughs life: "You'll never be able to predict much of anything ever again", laughs life at me, while I'm in the bathroom, wondering what the heck. Later, I call my Dr's office and let them know my situation. I'm offered a phone consult appointment, which I was very happy to accept. I really do have the best care!

Dr S and I discussed my labs, new treatments, new meds, new ouchy side effects, etc. We discussed "quality of life" issues. We discussed my options. We discussed Velcade vs Pomalyst with Darzalex, Dex. Who knows which is causing what. Perhaps, with all the side effects, Dr S suggests: "try stretching out Dex AFTER the Darza infusions"... "Maybe not take it day before infusions, but utilize the 40mg dose over more days, since the Dex seems to really help alleviate these new"... awful, painful, debilitating side effects... we discuss back and forth. Done Deal! I'll talk to my chemo lab pharmacists tomorrow and my local Dr.

Dex took it's sweet time kicking in, and still really hasn't given me the "kick" I'm used to, but the awful pain has now subsided. I think Dex will be the Darza side effect minimizer. I was slow to do much of anything today, due to incredible fatigue. I had to "force" myself off the couch and outside to move a bit, and I finally ate a baked potato and then left late for the lab for my blood tests. Everything is an effort lately. Not the Julie I know... This has got to change... I'm not an inside couch lounger.
When I have these lab results I will post them (look for an update April 1). But thankfully, it does look like Darza is effective at wrapping it's self cellularly into and onto myeloma, slamming myeloma's power! I have committed to "suffering", if Darza is my new Elixir. I'll figure out a way to "med up", "drug up", meditate, "ignore it", etc, and make this work. Myeloma, you have ruined my life, but I am forever grateful for this life I have...

Not long after my Dr phone consult, I found out another one of my myeloma friends passed away today. So shocking. I had met Lisa and her husband late last year at the chemo lab. She was somewhat newly diagnosed. June or July 2016, I think. I told them my story and my successes. I gave them hope and tips. She had many complications, had been in and out of the hospital, had to do dialysis, but they were very optimistic and looking forward to getting to and beyond the SCT process. She had many success milestones. She made it to City of Hope for her SCT. Today was 11 days after her SCT infusion. I don't know what happened. But I do know my heart is broken for her family. For her husband and young adult children. So incredibly sad. I just don't understand. I will never understand "Why Bad Things Happen to Good People"... Why Myeloma, Why?


D is for Darzalex side effect surprises
D is for Dex steroids to the rescue
D is for Done Deal, I'll Do it
D is for Deja Vu Diarrhea
D is for Dang, really, here we go again
D is for Dr appointment missed
D is for Dizzy and Ditzy
D is for Dex steroids Bipolar life 
D is for Done with all this insanity
D is for the tragic Death of a myeloma friend toDay

Look for my new lab tests update on April 1. No April's fools joke coming :))

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