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Thursday, October 18, 2018

Cruisn with Myeloma... What A Story!


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!
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!
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!
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!


  1. Replies
    1. Aahahaahahha!!! Loooooove this! Made my day Karen!!! I can just feel your WOW :)))) Thank you!!!

  2. I second that...Wow!!!!

    1. Love it!! I can feel the WOW!!! Thank you!!! :))

  3. You may not remember me Julie but I was also a deck9 neighbor from across hall... I was part of that huge bachelor party that was trying to meet all of our neighbors on the 2nd day coming back from Ensenada. We knocked on your door to see if you would like to join our festivities and lo-and-behold you opened the door.

    One of the most cherished moments was meeting you and hearing your story. Others may not know but as soon you mentioned to us your story, i crying behind my blue tinted glasses. My aunt just over came her fight with cancer and I just recently learned her daughter (my cousin) will have to battle the same. You guys are beautiful souls and I am happy that I am able to have met you both on deck9! Wishing you all the best and giving you all of our love! All 40 of my groom squad sends their <3's #FuckCancer (pardon my french mom & dad) #bestParentsEver #deck9soFine

    1. Wow GroomSquad9! So great to hear from you:)) Thank you so much for finding my blog, checking in and commenting! Means the world to me :)) We had soooooooo much fun with all of you as neighbors! Loved the revelry and fun energy!
      I am so sorry about your Aunt and Cousin. Cancer is awful, and especially when it hits families like that. I am so very sorry for their diagnoses :(( Hoping treatments go well, and they continue to have a good quality of life. Maybe bring them on the next Groove Cruise :))
      Thank you for all your kind words of support and appreciation. It was epic meeting all of you, and having you as neighbors. By the way, which one are you lol, you didn't leave your name!
      Thank you so much for leaving a comment! :)) Julie

  4. Hi Julie, I'm happy to see you went on the cruise! if not now, when? Looks like a great adventure and a good escape from the medical stuff. Hope your cold isn't too bad.

    1. Hey Thanks for checking in Matt! Yes, it was a super crazy trip, and certainly "Bucket List" status... but we have to do things while we can, right?! But nothing beats your Kilimanjaro climb! That was truly EPIC you did that!!
      Hoping you are doing well, and I will catch up on your status too :))

  5. Julie.What a trip.Fun to read about it!Really glad you and Jim could go with family!

    1. Hi Ron, Thanks for checking in and keeping up with my crazy journey! Can you believe all the years you've followed my blog, and all our years of friendship! I will send you an email asap. Thank you for your friendship and support!

  6. So cool that you and your family just went for it and did the cruise together. Hope you didn't pay for it too much, but I think it was worth it. As Janis said "You got to get it while you can!" Hope you're feeling better and get the chance to "grab some life" again real soon.

    1. Hi Warrior girlfriend Bernadette! Thank you for following my crazy journey, and yes you are right! We have to get it while we can. As you know, Myeloma is so fickle and changes us moment by moment, and we never know what's around the corner, and what's going to ambush us when.
      Hoping you are doing well, and your treatments aren't affecting your Quality of Life too much!
      Thanks again for your friendship and support :))


My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!

What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)


Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.