Cocktail Time!

Hello 1.27.17

How the days fly by! So much has happened since my last posts, regarding my mental and physical status on treatment. I almost don't remember all the details. But I'll try to keep this update short and sweet and to the important points.

After mulling over all my options, reading and reading, consulting and consulting, I decided to go with the Velcade shots... and the Pomalyst 4mg pills... paired with the Dex 40mg steroids. If this delightful cocktail doesn't scare Myeloma off, then Darzalex, here I come, probably along with some of those?

I read a lot online. A lot! Just my academic, inquisitive, counselor, information hungry personality. I read myeloma group posts, research studies, clinical information, pharma information, medical treatment center sites, other patient blogs, myeloma websites like the MMRF, IMF, Myeloma Crowd, Myeloma Beacon, Patient Power, etc. I read read read about myeloma ad nauseam, treatment options, side effects, etc. I realize my status isn't terrific, and my current stats are "scary", but I also realize I am very fortunate. Fortunate not have bone involvement and fortunate still to have decent organ function to handle a variety of treatment options. 7 years has taken it's toll, but it hasn't "taken" me.

With decision made, and new confidence to move forward, off to the chemo lab I went last Thursday, January 19 for my Dr appointment and first Velcade injection. After reviewing my blood stats, my Dr and I felt ok going ahead with the Velcade, Pomalyst, Dex "cocktail", (in spite of some low CBCs). She wanted start the Vel and Pom at the same time though. Velcade shot, right after my appointment, then Pom pills that night. But it would take a day or two to receive the Pomalyst, so she postponed the first Velcade shot one day. Oh well, go the flow Julie. Nothing is predictable about cancer and cancer treatments! Pom was ordered stat, to be received Friday or Saturday. So much for gearing up mentally for my first Velcade shot, only to be sent home to return the next day. See, once I make a decision to do something, I want to turbo charge ahead. No more waiting, wondering and stressing about all the "what if's". But whatever,...seriously not a big deal at this point. Decisions made. One day postponement, so not a big deal. We ordered the Pomalyst to be Fed Ex'd overnight and I was to return on the next day, Friday Jan 20 for the first Velcade shot.

Get in my cells Velcade!

At this point, I'm more than ready to switch treatments. Let's pummel myeloma, triplet cocktail! Honestly, my status worries me, and I welcome this new treatment, hoping it makes a dent. Done deal. No problem. Let's do this. So Friday, I returned to the chemo lab for my first Velcade shot. In a crazy way, it was like a "homecoming", and so great to see all my fave chemo lab nurses, pharmacists, patients and staff. Such wonderful people, saving all our lives!

Shoot me up!

I opted for the belly-fat shot, as unfortunately, Dex Steroids have really changed my body. I have plenty of belly chub now for successful SubQ shots. Ugh I just hate what steroids have done to me. But I can't go back to my "healthy anorexic", low calorie lifestyle now, right. Gotta get all those important food groups in daily, and not obsess over calories. Dex "makes me" want things I never cared much about before, like dark chocolate, salty foods like chips, cheese, etc, and I do more nuts now for protein. All those are rather high in calories, but what the heck, whatever!

 How I feel now lol

Thank you steroids for chubbing me up!

First shot in, stung a bit, but easy-peasy. Makes me laugh at myself for worrying about changing chemos. But, that was just the shot, I "knew" there were reactions to come. I just didn't know what, and when, and I seriously hate the side-effect's unknown time line. But oh well, you know my motto has always been: You Can't Control The Things You Can't Control, so Analyze it, Process it, Deal with it, and Move Forward!

Jim was just really glad 

they didn't mistake him for the patient!

And on the way home...

The conversation of the day was all about "cocktails", so Jim thought no better place to stop on the way home then BevMo! I've only been in BevMo once before, as I've never been a drinker, but now... it's all looking rather interesting. First on my list: Fireball! Bailey's and coffee, Malibu Rum, Sambuca, then... that Mint drink I remember from a long time ago... "Grasshopper"!!! ... ahahaaa... I'll have to ask my oncologist's how "chemo-cocktails" fare with "real cocktails". About time I grow up and start drinking. I'm running out of time... wink, wink!

Then This Happened: while we were driving and running a few errands beyond BevMo, turns out my Nurse was trying "frantically" to get a hold of me, and tell me NOT to begin the Pomalyst, as my labs from earlier in the day showed my CBCs were too low to add the Pom in with the Velcade. Seriously!!! I'm all geared up for this Dex, Vel, Pom cocktail, and the brakes are abruptly put on, and we skid to a cocktail halt. I was glad though, that I at least had Velcade in my belly, with Dex down the hatch earlier, as I seriously now get concerned when on any treatment break... even for a week.

My Pomalyst 4mg did arrive on Saturday. I picked it up from the local Fed Ex office, tucked it securely in my medicine drawer for later use, shook my head, and tried to process this crazy myeloma ride with "cocktail time" cancelled. At least I was strong enough for a singular chemo option, paired with Dex. Labs in a few days, they said, to update my status. Here's how my first lovely Velcade shot site looks now:

I did have a red rash there too, for several days after the shot, but the rash has subsided (with some good ole Benadryl and Cortisone cream). Just the bruise is there now. Not sure why it bruised? It's only a little bothersome, and so far, so good, no dramatic side effects... well a few... I won't give you the GI details, but if you've been following my blog for a while, or know me personally.... here's the hint... I have the OPPOSITE GI problem now, then I did with Revlimid. Maybe that's due to how cold it's been, and I'm not drinking gallons of water daily, or maybe it's due to the myeloma (itself) side effects? 

So I did blood tests again on Tuesday, and my Dr contacted me and said my CBCs went up just a little, just enough, so now ok to add the Pomalyst 4mg in. It's official, I've joined the myeloma 3's a charm, cocktail club!

And that's my chemo cocktail story.

Today:
Status labs this morning. Dex down the hatch. Velcade shot in the afternoon. Pom at night.
I'm tired, fatigued, weak, headaches, bit of Neuropathy, always thirsty and dehydrated and have had a "breathless" issue, mainly after eating. Hmm... I remember that from back in 2009.... will have to mention that to my Dr and Nurses. Most likely due low CBCs. Anemia? Oh myeloma, you are the "gift that Never stops giving". But still, I have many more positive "gifts" then negative...

Rained and stormed a lot here. 

Blew some panels around, but all's good and nailed down now.

Thanks for checking in and following my story. Please let me know how you are, what treatments you're on, and MM patient or not, how your 2017 is going so far :)

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

New Treatment Plan and Remodeled Dreams

Hello 1.17.17

We all have dreams. Dreams and Goals. Dreams, Plans, Aspirations. Those dreams you've always dreamed about. Big or small. Earth-shattering or minuscule. Tucked away in that quiet sweet-spot of our minds and spirits.

No matter your "status" in life, everyone has "dreams". All those "things and ideas" that inspire us, we wish for, plan for, and work so very hard for, during our lives. For some, those dreams came true sooner than later. For some, those dreams, barely realized ever. For others, dreams are reinvented, redefined, revamped, transformed and modified. Our dreams evolve due to life's complex speed bumps in our lives, whether major or minor, but always interrupting our lives.

As I process my ongoing, never ending cancer status, always mulling over the Why, How Come, What's Next, the complexity of "choices" within really having "no choice", I never forget my life's goals and dreams. My dreams are not "big". They are not impressive. They don't involve huge worldly accomplishments or huge worldly travel experiences. They are small dreams, actually almost "childlike". Perhaps because psychologically I "grew up fast", and had to process life deeply early on, unrelated to cancer. I was often referred to as an "old soul". My goals, different from my dreams, were to always be kind, insightful, sensitive, caring, deeply interested in others, their lives, their goals and dreams..., hence I became a Counselor. I wanted to make a difference in the world in a small way, with humans and animals. And I did. And I feel good about all the "goals" I've accomplished.

But then there are my dreams. My "future", which I never thought would be stolen from me mid-life, has been stolen . I never thought I would lose my independence, my health and my ability to really choose the direction of my life. I was always spontaneous, but always a careful planner. Work hard and be directed while "young", reap rewards of fun times later. But now, due to how MY body has reacted to MYeloma, how MY body has reacted to treatments, and how MY body has limited Me, most of my dreams have been ambushed, derailed, cancelled and are not possible any more. Literally not physically possible any more. I'm not angry, I'm not whining, I'm not depressed, I am sharing my actual reality. I just cannot do what I had planned to do in the 2nd half of my life. It's a fact. I've reconciled it. I haven't truly accepted it, but I know (for physical safety reasons) I cannot engage in most of the dreams I had dreamed of.

So with encouragement from our kids, we're reformatting, readjusting, rethinking, remodeling, revising, adapting dreams. I'm accommodating, but not accepting cancer. I'm adjusting and amending the journey. Creating new options that include what I cannot change about what myeloma has done to me and my life.

One of those dreams of mine is a Red Barn. Yes, a simple Red Barn. There's just something warm and inviting about a Red Barn. A Red Barn stocked with bales of aromatic alfalfa and grass hay. That scent. So real, so honest, enveloping your being with a sense everything will be ok. You just breathe in peacefulness. If you love nature, animals, horses, wildlife and the sweet scents of the outdoors, you know what I mean. There's just something about the "ambiance" of a Red Barn. That rustic, vintage aura of a slower, real life. If you are not a farm, or ranch person, then perhaps you know this feeling when you visit a beautiful botanical garden, a country winery, a colorfully landscaped museum... it nourishes your being, your soul. You take deep refreshing breaths, and feel alive and real. Life makes sense.

Knowing the myeloma road I'm on, knowing my reality, knowing 7 years with myeloma is no small feat, not knowing what's next or how much time I may have left... we're remodeling our original, 39 year old white barn. It's a make over, not a new barn. Replacing the white panels for red panels. Redoing the roof. Red Barn walls, inside and out, white trim. Big barn doors, inviting you in. It's just a simple barn. Horses have never lived in our barn, nor will they ever. Barn stalls are "horse prisons" to me (unless of course, they have open access to a large outdoor corral!). My daily view will be a Red Barn. A simple Red Barn that invites you to sit and bask in the sun. Walk through it, and breathe in the sweet aroma of baled hay. Walk through it and hear horses nickering, birds chirping, dogs barking, flies buzzing. Walk in, and feel real. Real life.

Not done, a way to go, but sure a fun process!
Our son is our "idea man" and "construction coordinator".
So awesome to have his insight, creativity and love.

And so, I've been all too consumed in thinking about my new, upcoming treatment plans. I posted my options in my Friday the 13th post, and I really do appreciate all your spot on feedback, reality checks and thoughtful comments! I've also posed my questions in online MM groups, and really appreciate all the honest and encouraging feedback there too. So what have I decided? One more round of Pomalyst at full strength 4mg, adding Velcade, continuing with Dex steroids. I have another Dr appointment this Thursday, and first Velcade shot/infusion thereafter. Yes I'm scared, yes I'm worried, yes I hate new and different side effects, but reality is myeloma currently is "winning", and I have to brave up, and take this treatment process more seriously. Everyone is encouraging me to start the Darzalex, stop worrying so much about the infusion reactions, and stop playing around with my "aggressive" type of myeloma. Ok, ok... I'm working on it. I will, start next month.

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

Decisions, Decisions... Treatment Changes Scare Me!

Friday 1.13.17

Yep, it's Friday the 13th... perfect day to already break my "on the 7's" theme posting, as I have news, labs, numbers, results and big decisions to make as a result of my oncology appointment yesterday 1.12.17

Yesterday, Thursday January 12, 2017 was really my Friday the 13th! It was pouring rain here in CA, when I left for my afternoon Oncology appointment. Driving in the rain doesn't bother me a bit, I rather enjoy it. It's all the other crazies out there! That scares me. I'm cautious and smart, and drive an older model SUV, so I feel quite safe... UNTIL MY DRIVER'S SIDE WINDSHIELD-WIPER DECIDED TO BREAK, SNAP BACKWARDS INTO THE GLASS WINDSHIELD, HITTING METAL ON GLASS, FLOPPING AROUND, AS THE RAIN POURED CATS, DOGS AND HUGE RAIN DROPS! Scared me so much! The wiper whipped around, metal hitting the glass windshield, until I got my senses about me to turn the wipers off! I was driving over an overpass and couldn't pull over, and by the time I could, traffic was moving so fast and recklessly, I didn't want to take the chance pulling over, and not being able to pull back into traffic. Besides, what the heck would I do anyway. The wiper was broken, backwards, metal on glass, pouring rain, and I had an oncology appointment to get to. So I continued to drive in the blinding rain, without wipers. Scared the shizzz out of me, but I stayed in the slow lane, shaking my head, and thinking, what the heck life... what the heck are you doing to me! I'm done with challenges, tests and "excitement". SERIOUSLY DONE! And this was before my appointment and the unsettling news to come...

This could have been my windshield, 

had I not turned the wipers off when I did!

So I made it to my appointment alive, and my Dr brings up my labs with a worried look, and let's me know she is very concerned with the upward climb of my numbers. Bottom line: Myeloma is winning over Pomalyst. Pom is barely making a cellular dent... Time to change the treatment plan AGAIN. Ugh!! Nooooooo!!! C'mon Pom, please work! We got off to a rocky start in Nov and Dec with all my crazy allergies, head cold illness and crazy pinched nerves back issue. Maybe one more month will make a difference I plead. I am less and less brave about this cancer thing every year, every change in treatment. I am so fearful of new and awful side effects. I've got the crash cycle down, know fatigue all too well, GI stuff in "control", neuropathy not too bad, etc... I'm just starting to be friends with Pom... perhaps that's the problem: If chemo DOESN'T cause dramatic side effects, maybe it's not working?... see Pom and Dex steroids are giving me the opposite problem Revlimid did... going from unpredictable volcanic diarrhea with Rev, to both diarrhea and being corked up with Kyprolis, and now Pom and Dex fully cork me up. Maybe it's all the myeloma cells corking me up? LOL, sorry to the non-patients reading this. Us cancer patients talk about our GI issues and body side effects like "normal" people talk about their social plans!  

My Dr wants to stop Pom and start Darzalex and Velcade, along with good ol Dex steroids. As in start next week! Darzalex SCARES ME! I have read a lot about it, from Research sites to Pharma sites to Patient sites. The initial infusion of Darzalex SCARES me! Google it, read patient blogs and infusion insanity! (Besides, isn't it targeted to IgG myeloma, and I'm IgA?) Remember I skipped right past Velcade for Kyprolis, Nov 2015, because of all the reports of terrible Neuropathy with Velcade. Ugh! I hate myeloma, and hate that I am controlled by myeloma and what it is doing to me and that I have to take meds or die!

So after discussing my labs, and various options for treatment and meds, I gave in, and said "yes, ok Dr, you're the expert, you know best, I will try this new regimen..."  I drove home teary, sad, mad, frustrated, and incredulous, that this is what my "life" has come to. I'm tired and worn down from 7 years of this battle. I want to feel good. I want to play. I want to be "normal". I want to make "superficial" plans like everyone else. I want to work, play, go places, other than appointments related to myeloma. I just want to live an uncomplicated life... 

Fortunately, it wasn't raining much driving home. Just misty, so I did ok without functional windshield wipers. Broken wipers. So symbolic. Rain streaking across my windshield. Tears slipping from my eyes. A broken, upside down wiper. Me, broken, my life upside down... 

 Ok, so Beta2 went down 10 points ^

 These don't look too awful ^

Ok, ok, yes... my IgA went up 10 points ^

Ugh, M Protein up too ^

My lovely compromised immune system

And yes, this one says it all: 

ABNORMAL! :))

I was grateful to return home safely, but not a happy camper psychologically. Still "shell shocked" Pomalyst wasn't killing off myeloma cells as I had "expected", stunned that my labs weren't better with plummeting myeloma stats, and overall just sad about the status of my life. So what did I do to "rebel" and feel better? Put on a coat, rubber boots and went out to my "happy place", the horse arena, and scooped the horse poop in the pouring rain. Quite fitting, don't you think? Shoveling poop, in so many ways, in my life...

 Pouring rain here.

These pictures don't tell the downpour story!

 Happy horsies, clueless to my situation

 And it cleared a bit,

then poured some more

I sloshed around and processed my situation

Poop here, poop there, poop everywhere in my life

Here's what I wrote to my Dr late last night:

Hi Dr P,

I've been doing a lot of thinking and reading, and I am "scared" to start Darzalex and Velcade together. I was looking over my recent myeloma stats and saw my Beta2 went down a whole point, the Beta Globulin went down a bit too. The IgA only went up 10 points and the M Protein .27

I do realize my upward trend, but if you are ok with it, I would like to consider the following for this next treatment cycle:

1- continue with Dex and Pomalyst for one more month, but at full dose, 4mg

2- or try Dex and Velcade

3- or try Dex, Pom and Velcade together

4- or try Darzalex singularly

Last option, I don't think I am ready for is the combo of Darzalex and Velcade, as side effects from 2 new meds may be overwhelming for me.
So sorry to be such a pain. Please let me know your thoughts. 

She's gone for the weekend, as her RN called me back... so we'll see what she says early next week. I was also informed that I was already scheduled for the chemo lab for Thursday, Jan 19... ummm NO!!!

Ok Myeloma Patients Out There... Help Me Out... Your Opinions Please!

Today, Friday the 13th-

Pondering: clouds, thoughts, choices,

fears, frustrations, sadness, anger

But it's hard to stay upset, when so much beauty

surrounds me...

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

Hello 2017 on the 7's

1.7.2017

Well hellllloooooo 2017! Happy New Year to everyone! We've all made it another year. Welcome to "posts on the 7's for 2017". Me, 7 years now tackling Myeloma. So surreal, right?! Hoping your year is filled with happiness, fun, success, dreams and goals coming true for you.

Me- onward I march in this crazy, unbelievable Myeloma battle. You're probably tried hearing me rant, post after post, that this cancer journey is so unreal and I still cannot fully connect with it or accept what has happened to me, but it's true, Myeloma is just "not me". Being a sickie is just not me. As I enter year 7 of treatments, medications, side effects, chemo-type changes, upward dosage changes, body changes, life changes, side effects ad nauseum, I remain hopeful that my current regimen will be effective and give me additional months and years! Today I will go for blood tests, and find out my myeloma stats this coming week at my next Dr appointment, Thursday January 12.

 Wish me good luck! 

Will be interesting to see how weekly 40mg Dex steroids paired with 3 weeks of Pomalyst 3mg alternated with 4mg, pummels (or not), the myeloma cells. I am hopeful, yet scared at the same time. What if Pom 3mg/4mg doesn't make a dent? What if myeloma is raging so strong, that I have to move upwards to 4mg? Then what if 4mg doesn't make a dent? I know I've been "spoiled" by initial super treatment success! Revlimid 10mg, with 40mg Dex steroids 4 days on, 4 days off, brought my cancer level from almost 70% down to 10% in 5 months, prior to my Stem Cell Transplant, July 2010. Then my SCT was a total success, and I was termed "CR"- Complete Response! I maintained CR with 5mg Revlimid maintenance for a little less then 2 years. I had "a life" back then too! From 2011 to mid 2013 I was able to work a bit (while on Revlimid maintenance), engage in a few fun events on steroid days, and go a few places (when not terrified of volcanic GI issues!). Then myeloma came roaring back summer 2013, and back in treatment I went... and here I am 2017, going on my 7th year of myeloma, my 4th year back in treatment after coming out of CR-remission. Whew, what a journey, right?! If you want the whole story, just click on the various years to the right, and I have all my monthly stats and stories there for your reading pleasure.

Throwback to 2010!

Here I am, December 2010, trying to be "normal", trying to take my life back, and return to work. I wound up getting sick from all the college cooties about every other month lol! This was my "poodle" style hair growing back, after I buzzed the last of my blondie locks, October 2010.

I'm happy to report that January 2017, so far... has been drama free, regarding all the dramatic illnesses I encountered in late November and most all of December 2016! So far no more cooties and sickness bugs have attacked me. But, I don't have much of a life, don't leave the house much, don't expose myself to many humans, don't go anywhere most of the time, etc. What a crazy life! But I would rather hibernate at home and be healthy, then go to "war" with all the sickness out there. The few humans I "allow" over, know to wash up the minute they come, put on shoe cootie booties, and be extra vigilant about cleanliness. OCD, yes... and proud of it, as I've NEVER had Pneumonia, or a terrible chest flu, etc... so there :))

Hoping 2017 is my lucky year!

Did I surprise you with my new "on the 7's" post? I'll be updating on the 7's, but I'll also post randomly in-between whenever I have "earth shattering news", no matter the date. Thank you always, to infinity, for checking in, reading, commenting and caring as you do. Hoping 2017 is an awesome year for you and your family, your dreams and plans! 

Here's several links with great articles and super helpful myeloma information. Great reads for the myeloma patient, caregivers, family, friends, and all you healthy people out there, who are mystified at what happened to me :))

Take your Shoes Off!

Vitamin Supplement "warning" 

Patient Power- Ask the Expert: Multiple Myeloma

Can Myeloma Be Diagnosed Early Through Chemistry and Hematology Panels? 

Great articles from Myeloma Crowd

Myeloma Dispatches: Mirror, Mirror On The Wall 

Great articles from Myeloma Beacon

MMRF- Invaluable myeloma information site!

IMF - Invaluable myeloma information site! 

Ask Dr Durie super helpful videos!

Well not really! 

My daughter gave this to me

as we looooove the Lion King movie!!

This was my NYE attire :))

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