Yes I Got Sick, Then This Wonderful Event Happened, and Adding a (New to Me), Vintage Chemo

Hello 10.28.18

It's Goodbye October, Hello November!

Inching closer to my 9 year Myeloma Diagnosis Anniversary! Wow! Becoming more and more surreal, unbelievable, crazy, amazing that I am still here!.

I just can't believe that 9 years ago this time Myeloma was RAGING inside of me, and I didn't know it yet.... My IGA was close to 5800 (normal = 70-400). My M Protein was over 4.3 (normal = 0) and my first Bone Marrow Biopsy showed 70% cancerous myeloma plasma cells! And here I am to talk about it, almost 9 years later, having survived more rounds chemo than I can count, a Stem Cell Transplant, and all the 9 years of side effects I have endured! But I'll reminisce about all of this soon...

Because, since my last post, the Adventures of Julie in Myelomaville continue :))

1- Yes I bit the dust and got sick, but thankfully only a lousy head cold. Seriously, how amazing is that! I go on a Cruise with 2000-3000+ humans, and only get a lousy head cold! Guess those magical Zarxio, Neupogen WBC immune system building injections gave me some back up power to fight off all the potential nasty cooties out to get me! I am very cautious and careful though, and incessantly wash and sanitize my hands, myself, those around me, my living space, etc. I tried very hard to not let anyone touch me, hug me, and I never shake hands, I use antibacterial wipes to touch most anything public, and I brought my Mint Isopropyl Alcohol spray to sanitize and spray anything and everything and everyone! My finger nails even turned a lovely light green from the the Wintergreen color LOL. Wow, I sound like a freak... but it worked... I did not get any deadly viruses, bacterial yuckies or pneumonia, etc...

2- Next I agreed to begin the Vintage chemo Cytoxan with my Velcade and Dex steroids... only I am going to Cheat... ssshhhh don't tell my Dr yet, but no way am I downing 8 frikn Cytoxan pills at one time! I asked her for a lower dose, and she was kind enough to lower the standard of 10 Cytoxan pills to 8, but after I picked up the Rx, and saw them, and began to visualize ingesting all of them at once!... I'm Helllllllooooo, Noooooo, I'm not going to put all those in me at once, risking a nasty GI backlash! I know, I know, I'm a Cancer Patient with Incurable High Risk Myeloma, and I should be on board for high dose- kill off those super strong myeloma cells trying to kill me!! Well, yes, but No! At this point in my life, and treatment.... Quality of Life, and lessening the chance of feeling gross and sick, is my main priority! Yes my myeloma is 4 Times the High End of Normal right now... but sorry, I just can't stand the idea of getting grossly GI sick. See way baaaaaack in June 2010 I had "that reaction" to IV Cytoxan, and uuggghhhh, nope, no thank you... not again, if possible. So Tomorrow Night, Oct 29, after taking 40mg Dex steroids in the morning, my weekly Velcade shot in the afternoon, I will very tentatively, unbravely take 4, yes four of the 8 Cytoxan pills!

Hello pretty blue Cytoxan pills!
Blue just like my lil blue Bug...

Would you take 8 or 10 of these at a time?

I'm also armed with Zofran, but I don't think I'll "pregrame" with that just yet, as I'll be on the high dose, 40mg Dex steroids, and that should help with any nausea, right?? Suggestions please!!!, if you've done this combo, which most of the Myeloma patients have, early on! Why didn't I?? I was concerned about all the warnings from myeloma patients about BAD Neuropathy from Velcade, so I skipped over to Kyprolis, and never had the Cytoxan pills added in, as Kyprolis Dex worked for me for about 10 months, then Darzalex, Pomalyst, Dex worked for me for about 18 months, so here I am, going backwards to meds I skipped, before I'll do clinical trials, CAR T, etc. Yes, no matter how "bad" my situation becomes, Quality of Life is first and foremost to me... since what's the point of treating myeloma, if I'm so sick all the time, I'm not living. Isn't the point of treatment to give a cancer patient their life back??? I've been doing this for almost 9 years now, and for so many hours, days, weeks, months, etc, my life has been so limited by side effects, I learned that for me, the treatment has to make sense... kill the cancer cells, but let me see the sunshine too!

So after the cruise, and getting sick, the pressure was on to get well fast, as I had the honor of being selected as Opening Ceremony Speaker for the Doggie version of the American Cancer Society's Relay For Life. Yes, "Bark For Life" is a similar theme as Relay For Life, but the focus is Dogs as our companions, our "support animals", and how they help us emotionally and psychologically. Here's the event in pictures, and I will be back to narrate the details later, as so much has happened, I'm so exhausted :)) I've done this event for many years, but this year was super special, since they asked me to be Opening "Barker", Speaker, and my Team- Mutts For Myeloma, was the Grand Marshalls, leading the doggie walk! So fun, so cute, and such a happy, positive event! Go Team Mutts for Myeloma! 

I made these hand held signs for our Team members to carry

My Story

So much fun!

How adorable is this!
Special parking privileges!

There I am speaking
Sharing my Crazy Myeloma story

And we're off!
Mutts For Myeloma
Leading the Pack

Go Team Mutts For Myeloma!

How I did all this... I don't know
But 1 lil 4mg Dex steroid pill did help!

So sad
My hubby Jim is having such mobility issues
Best Son Ever Scott, pushing Jim for the Walk

Best pals ever!
Susan and our Hanna
Me and our crazy puppy Jack
And Daughter Alissa with her Nala

Super friend of Alissa
Kristy, and her adorable kiddies

Alissa and Susan
Jack, Nala, Hanna

David and Debbie with doggie Abby
So happy you could come!

Alissa
Jack, Nala, Hanna

Susan and Hanna

Scott's GF Ashley
with her adorable Pugs
Knuckles and Porschia

The Crazy Pack

Go Doggies enriching our lives!

Kathy's sweet Portia and Alissa's Hanna

Portia and Porschia!

Seriously!

How Lucky Am I!

This Is Why Quality of Life is so very important to me! I could not have done this event if I was feeling GI sick from chemo side effects. Been there, done that for so many years on Revlimid with "volcanic diarrhea". It was challenging enough with this event so early in the morning, as I never feel well in the early mornings! And I'm still challenged with all the bone, nerve, leg, muscle, etc pain from the myeloma tumors, plasmacytomas, lytic lesions, holes, etc, whatever the heck they are... so I took one 4mg Dex steroid late Friday night, so I would feel less pain, and also have the energy to get up early, function and be able to give my speech about my life, myeloma, and the importance of doggies, pets, animals in my life. It was a challenge to get me, my disabled hubby, and the 3 doggies all at the park by 8am! Thankfully my amazing family, and Team Mutts For Myeloma were there to help when we arrived. And did you see the pic of my reserved parking space? So Adorable! 

But later on that evening, I decided to do as my Drs and Nurses always say:.... "Go To ER! or Urgent Care! if you have Pain, Fever, etc... So I went, as the pain in my lower back, hips, pelvic area is erratically painful, with different type of pains all the time. So I thought it best to get an updated xray, as I've had a few crazy "slip, trip, ALMOST falls. Ever since my July fractured RIB, I've realized 9 years of crazy Ouchies, may have been other fractures, sprains, bruises, bone involved issues, that I ignored. So I went, was seen by a wonderful, thorough Dr, and the good news is... no new fractures, just all my myeloma plasmacytoma tumors, lytic lesions, etc affecting my nerves, muscles, etc.... Hmmmm ya think I should do the Radiation??? I think I should, as better to be ProActive, than ReActive, right!! And when that pain comes.... OMG... it's truly unbearable... especially since it's at night, when I've stopped moving around... Crazy stuff!

And I'm still laughing about the amount of Meds I'm needing to take to keep me ALIVE! Here's to Velcade, new Cytoxan, Dex steroids, Mepron/Atovaquone, Acyclovir... just to name a few LOL

Welcome to my life :))

40mg Dexamethasone steroids- 10 pills

400mg Cytoxan chemo- 8 pills

200mg Acyclovir- 1 pill

and other Vitamins, pain meds, Thyroid daily pill....

Hello weekly Velcade shots

1x or 2x per day...

Thank you for checking in, and caring about my myeloma story! Hoping you are doing well, and have figured out how to bring your blend of Quality of Life into your Life. It's different for all of us, and I just want to be able to feel less pain, less side effects, and be able to do a few social-family events here and there. LOL---- this October was of course and exception... I usually don't have all these activities at a time... well maybe I do... thinking back to some of my posts :))

Be well, stay well, and find that which gives you joy and purpose!

Cruisn with Myeloma... What A Story!

10.18.18

Hello loyal readers, followers and new finders! Have I got a story for you!!...

But first several Dr appointments today, then I will finish this story later, and update you with my treatment status and plan, Radiation consult update, and current Myeloma stats.

I'm baaaaack, and here's the crazy story:

So I Took a BBBBBBig Risk and Went On A Cruise last week!
Seriously, a Cruise! A Big Ship with lots and lots of people and Coooties!
Something I "swore I would Never Do", since my Myeloma diagnosis... but back in March of this year, our daughter convinced me, after much pleading and explaining, that doing this was truly a Bucket List Trip for All of Us, and "we  just have to do it"!!!. She loves to travel and attend music festivals, loves sharing her adventures with us, always wishing we could somehow join her. With my erratic, unpredictable myeloma status, chemo treatments and complications, along with my husband's rapidly declining health (that's a whole nother blog.... ), I decided to let her book this trip for us, with of course, travel insurance, and let life decide if it was to be!...

It's a really Big Deal, because sadly, there's just so much we DON'T do any more, due to our complicated bad health. Often, I feel life is just passing me by, and I am spending what time I have left on this earth, processing all the things I used to do, and feeling incredulous we are so limited in what little we can do now... Our situation is so tragic considering who we used to be, how hard we worked, and how incredibly active we both were on so many levels...

This year has been really challenging with all the bad bone news from my Pet, CT Scan. I try to process what's going on inside me physiologically, but it's hard to visualize and connect with the extensive bone damage myeloma has done to me. But when I was surprised in July with the broken rib reality, the outrageous bad (allergic?), fever, extreme bone pain reaction to my first and only Zometa infusion, and the EXTREME bone, muscle, nerve, pain I had July, Aug, Sept and beginning of Oct, I realize I must "do" life while I can.

We've missed so many events with family and friends due to both our extreme pain situations, complicated diagnoses, not to mention all my side effects from my myeloma chemo treatments.... As I write this, it's just so hard to wrap my head around how "sick" I really am... But I am, and so is my husband, and we just don't have much of a life, beyond medical challenges... so crazy to comprehend!

Sooooo.... Last week, I had my Velcade chemo shot on Monday, I packed us up on Tuesday, and Wednesday, we boarded the Cruise Ship!!! Yep, you read right! Chemo Monday. Packed on Tuesday. Boarded the Cruise Ship on Wednesday!!! Me, armed with 5 days of Zarxio (Neupogen) WBC building injections, plenty of pain meds for both of us, and lots of colorful face masks :)) I seriously only made the decision to go on Tuesday, the day before the ship left on Wednesday! My intense, incessant bone pain from July forward, Jim's declining health, and the RISK for a Cancer Patient with a Compromised Immune System is down right crazy to do this,.... But I decided, and we did it!

https://www.groovecruise.com/en
You won't believe what type of Cruise this is!

My Groovy Cruisers

that got me into this insane adventure!
Justin, Kristin, Alissa 

Stylin with my trendy face mask on Pirate theme night!

LOL! Just look at those ridiculously HIGH 

WBCs from 5 days of Zarxio! I didn't know how high at the time,
but saw these results this past Monday, after returning
from the cruise! 

Way to keep healthy on a Cruise :))

Thank you Zarxio for pumping up my Immune System!
So far so good, I'm feeling exhausted, but ok...

And look at that ANC!
Power on immune system!
Keep me healthy!

Beautiful sunsets from our Balcony!

So if you can imagine,... this Cruise is a like a combination of Halloween, New Year's Eve and College Dorm Life! I can't even describe the all the shenanigans going on. There's music and dancing all day, all night. There's a dress up theme during the day, and another for night. The level of activity and energy is electrifying. Everyone is happy, playful, positive and fun. We of course didn't partake in most of the activities, but I made sure to spend as much time as possible outside on the decks, in the fresh air. Which brings me to remember to mention, that Hurricane Sergio caused NCL to reroute the ship from Cabo to Ensanada. I didn't really care about that, as my hubby and I weren't planning to disembark anyway.

Alien night

Groovin at the pool with Kristin

We spent time eating, and meeting very interesting people. We spent time on the top deck enjoying the sun and fun. Our daughter had posted our "story"on the cruise website, so we were quite the "celebrities", especially because of my crazy cancer situation, and also my hubby's "old age". I haven't mentioned it here, as this blog is focused on my Myeloma journey, but over time, his medical issues of Spinal Stenosis, pain and mobility limitations from blood clots from a 1983 ski accident, and over the last several years, Alzheimer's has completely changed our lives. As complicated as my situation is, I have become his mental navigator and caregiver... It's all so complicated now, with both of us with serious diagnoses. So crazy for two people who were so incredibly healthy and active all our lives, on every level....  So you can see why our daughter saw this trip as a Bucket List item, that was becoming a "now or never" idea... Our doctors agree... GO... now... while you can...

We're so cool

Jim and best activities director Justin

See my shirt... It says:

"If Not Now... When" :))
Super fun group of Groovy Cruisers

Did we "relax" much? 

No, lol

So much going on all the time!

Selfie sunset with Kristin

Meet my buddy John Beaver!

http://content-magazine.com/home/dj-john-beaver/

It was serendipitous that we were on the same deck,

as one day we passed in hall, started chatting and discovered

we were both cancer survivors!
https://ocweekly.com/john-beaver-enjoys-his-double-life-as-a-dj-and-zoo-keeper/
Turns out he was one of the DJ's on the ship, and 

he's also an animal lover like me, and a professional zoologist by day!
Such an amazing, genuine, sincere, talented guy!

We went to one of his performances outside on the back deck

and I danced my heart out, as I haven't done in years and years!
I'm still feeling it now...

Hard to tell what is bone pain, muscle pain, nerve pain, cancer pain

or dance pains!!!

After we danced our toes off with John Beaver!

3 cancer survivors rockin the boat!

Gliz, Glam, and Shine it up night

Super fun matching glitter sequin robes

Love the NCL staff
They took such great care of us!
Ruixuan wound up being our waitress at several restaurants
We became cruise momma and daughter :))

Groovin and movin,
stylin with a mask!

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

But now, "back" to reality...

I met with the Radiology Oncologist yesterday and discussed the pros and cons of Radiation on these lovely tumors, or are they plasmacytomas, or are they lytic lesions, or holes... I still don't get all the interchangeable terminology of Myeloma eating up our bones.... but I do know myeloma is eating me up from the inside out, and pain is now part of this insanity. Here's my Pet CT Scan details from April
So we discussed the details of Radiation, and whether or not I should do it. At this point, it's really a "palliative", pain related decision. I was concerned when he mentioned that radiating will kill "good bone marrow", and since this lovely tumor, plasmacytoma is on my sacrum, near my colon/bowel, I don't want to damage that either, and risk going back to my "volcanic lower GI days". So we left it as "wait and see", and if the pain becomes too unbearable again, I will definitely do it!

Can you find the tumor on my Sacrum??

2+ inches of lovely plasmacytoma tumor, lytic lesion...

And look at those lovely spots on my spine!

Is all this for real??

Hello M Protein
Ugh, You're back again :((

Dang you myeloma, raising my IGA :((
Velcade's coming to get you.
and we'll be adding Cytoxan chemo pills
next week.... gggrrrrr

So all that happened this past week! Wow!!!

It's been a whirlwind with everything medically that happened before the trip, the crazy fun of the trip, then back to medical madness now... I'm just hoping hoping hoping I don't get sick.... Jim's had a raspy voice, is contested, and doesn't feel good.... and... I have a headache... and a sore throat.... Nooooooooo.... sadly yesssss, I'm getting sick....

Yep.... I'm a sickie... I bit the dust, Friday, Oct 19, just after this post :((

Thanks for checking in, and I hope your life is full of happy positive things, that rewards you and yours every day!