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!