6 Years Ago Today, and I'm Still Here To Talk About It! 5 x 6 = 30

Hello 12.30.2015
6 years ago December 30, 2009, I never thought I would see December 30, 2015! But here I am and fighting harder than I knew I could or would have to!

6 years ago today I was diagnosed with Multiple Myeloma. Multiple-I-Had-No-Idea-What-You-Were-Myeloma! I think I've posted a reflective blog about what happened on 12.30.2009 each diagnosis anniversary (2010, 2011, 2012, 2013, 2014), so this post I'll change it up a bit.

I'm still stunned about my Myeloma diagnosis and I still write these blog posts as if I am writing about someone else's life. Honestly, I still cannot believe I have cancer, and I still cannot believe everything I have been through medically, and I still cannot believe how much my life has changed, yet still stayed the same since 12.30.2009

Talk about a roller-coaster year, 2015 has been that. You can read all about my crazy treatment ups and downs this year (see my 2015 blog post list on the right). From dealing with crazy random, unpredictable, volcanic lower GI emergency "situations", to trying too hard to be "normal", to carrying on as if I didn't have terminal incurable cancer, to being too scared to change chemo medications because Revlimid stopped being as effective for me, to the sudden tragedy of my first original amazing oncologist passing away, to my immune system being so weak I was actually turned AWAY from starting my new IV chemo Kyprolis, to my current I-can't-believe-my-numbers-are-improving status!

6 years ago today I received news NO one ever ever ever never wants to receive. I received a permanent life changing diagnosis, that I still shake my head at, and try really really hard to process and digest mentally. Receiving any cancer diagnosis is overwhelming to say the least, but to receive a cancer diagnosis with the caveat that "there is no cure", is just mind bending, just too immense, too intense, too mind boggling, and devastating to comprehend. And to complicate things, Myeloma can be deceiving to most, as we often appear "ok" on the outside, while being really really sick on the inside.

6 years ago today when I was diagnosed with Multiple Myeloma, I didn't have a clue what it was. Fortunately I was diagnosed quickly, relative to what most people go through prior to a Myeloma diagnosis. I had very alarming "routine" blood test results October 2009. These alerted my GP something was really amiss internally with me. I was extremely anemic as a result of a lot of bleeding-out for a year or 2 (yes my stupidity...), weak, tired, sickly, fatigued, dizzy, fuzzy mentally, weird bone pains, low appetite, etc. Then several subsequent blood tests later November 2009, revealed even more concerning blood chemistry stats. As a result, I was referred to Hematology Oncology December 14, 2009. More blood tests and scary medical conversations, then... I had my first Bone Marrow Biopsy on December 18, 2009 and that's when I began to realize something serious was up.

This picture, in the cafeteria, after my diagnosis... I never saw the words, just the picture...

On 12.30.2009, around 11:30am, Dr Lee very patiently explained my Bone Marrow Biopsy results, blood test results, and calmly explained my Multiple Myeloma diagnosis. My.What.Diagnosis?! She then sent me for more blood tests and to pick up several prescriptions. It was the day before New Years Eve. Jim and I became walking zombies. Stunned rag dolls, just nodding and bobbing, saying huh? what? when? where? how? why? get what? do what? take it how? eat what? return when? She was so kind, so patient, wrote notes out for me, told us to go down to the cafeteria and eat something while we waited for my blood test results to see if I needed platelets, or a transfusion, or this or that. I couldn't comprehend what I was being told. I was numb. Jim more numb, more tears. I couldn't process it. Inside the Cafeteria I just stared at that forest picture (above). I didn't see the words. I only saw the trees. I stared at the picture numbly and said to myself, "I have CANCER. I, Julie have CANCER. My life is FOREVER changed. I have CANCER. I have INCURABLE CANCER. My life has changed Forever and Ever. I may not have long to live. I have terminal CANCER. I won't be able to hike in a forest like this picture, anymore..." was what I remember saying in my head. Tears streaming down my cheeks. I just stared at the forest picture. I didn't see the words. Tears streaming down my face. I just keep mumbling... I.Have.Cancer.Incurable.Terminal.Cancer.

Cancer changes you. Battling incurable cancer for 6 years changes you. Being treated for cancer continually, changes you. Wears on you. Wears you down. Mentally and Physically. But you battle. You battle for all it's worth. You battle for hope. Hope that you have additional years...
Here's my 2 cents. What I know. What I learned. What I do:

Pay attention, listen to your body, Don't ignore strange symptoms, Ever!
Get regular blood tests, discuss the results, in detail
Be proactive with your health
Hydrate
Eat well, Healthy, but Fun
Lower your stress. Stress is a trigger. Stress is a killer.
Get rid of negativity and negative people
Laugh a lot, a lot, often!
Speak your mind, be real, be you, be sincere
Shut up, listen, process, analyze
Breathe deeply
Breathe very deeply often 
Hydrate
Smile often. Smile at the little things you notice
Be around people that Inspire you, Energize you, Empower you, Make you happy
Shake off negativity, delete it from your life
Delete negative things from your life
Laugh at ridiculousness
Laugh out loud a lot
Laugh just because
Cry when you need to
Don't repress your feelings
Ask a lot of questions, don't fear honest answers
Hydrate
Rid your life of that which brings you down, or complicates things unnecessarily
Less is More
Less really is More
Eat and drink the rainbow, but have ice cream and cookies and potato chips too
Don't try to be in control all the time
Trying to control things adds big stress
Balance, moderation, simplicity
Impatience becomes Patience  
Hydrate
Do for you
Do for others
Be brave, but it's ok to be scared
Fear heightens our awareness, insights and our acuity
Don't fear, fear
Make your monsters your friend
Talk, share, laugh, ask, question
Do what you love
Love what you do
Do because you can
Pay attention to your needs
Pay attention to other's needs
Set boundaries, and don't feel guilty
Big things become small things
Live life now, don't wait
Hydrate
Use your things, don't wait
Every day is special
Every day is a Bucket List day
Say yes as often as you can
But say No just as freely
Play and be playful
Do your hobbies
Love your job, your career, your goals
Book that trip, take that walk, ride what you love to ride
Breathe in nature and all this beautiful earth offers
Appreciate others always
Say please and thank you
Tip big
Smile
Smile with others, to others and while alone
Notice the little things
Process the big things
Stop and pay attention
Be aware, notice life, immerse yourself
Thank your medical team, your family, your friends, your co workers
Rescue, adopt an abandoned, abused, needy animal
Or take treats to your local animal shelter
Donate clothes, blankets, shoes to those that need them
Put a smile on someone's face as often as you can
Keep a smile on your face as often as you can
Hydrate
Take a lot of pictures
Write your story
Tell your story
Give, give however you can
Give of yourself, your time, your things, your accomplishments
Share you with them
Pay attention
Notice
Be aware
Smile
Laugh
Love
Be comfortable
Be honest
Be real
Be grateful
Say it, express it
Live Life Every Day
Hug those you love, always tell them you love them 
You Have No Guarantee of Tomorrow- Embrace Life Now!

October 2010

December 2015

As 2015 comes to a close, I'd like to thank all of you for reading and following my myeloma journey via this blog. If you are battling this stupid cancer also, I wish you the very best of luck on your journey pummeling myeloma. I hope my writings and musings have helped you, or given you hope, or at least entertained you. If you are my friend, family, colleague, I thank you for continuing to check in and following my status updates.

As we leave 2015, my 5th year battling monster myeloma, I say good bye to posting on the 5's. As we turn the calendar over to 2016, and I enter my 6th year of battling monster myeloma, look for my posts now on the 6's.
I'm not a math whiz or math major, but get this:
5 x 6 = 30
I don't think I'll ever have another math formula like this again!
Goodbye 5, Hello 6, and Today is the 30th.
5 x 6 = 30
Wow. Just Wow!

And finally, speaking of survivors, remember my student-friend-like-a-son Brian. Triple Cancer Survivor Brian. We met up a while ago and he told me of his rap song, representing his cancer battle. Take a listen. Really listen to his words. It's really amazing, just like him!

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

Numbers Don't Lie and Other Shocking News!

*Warning* Post Written on Steroids lol!
Ok Ok, I confess. I'm a numbers freak! I just can't get enough of seeing my blood test stats. It's such a precise window into how Myeloma is winning or being pummeled! I drive the nursing staff nuts with my requests to print print print, release release release my stats! When I meet with my Doctor, I hover over the computer screen with her, asking, nodding, inquiring, questioning, pointing, comparing. I've never been the silent complacent type, and I'm even more obsessively analytical and inquisitive now.

So now that I'm hooking up to Kyprolis 2x a week, for 3 weeks in a row, I get to obsess over my labs weekly! My Doctor has requested I do blood work 24 hours or less before my infusions to confirm if I am doing ok, and strong enough to handle this new Kyprolis regimen. (Initial first dose was lower in Nov, now increased in Dec). With profuse apologies for being so "high maintenance", I always ask my kind Nurses to print my most recent lab reports.

And good thing I do, as my December results have been down right shocking and mind bending. I keep thinking they're misprints. They must have my blood mixed up with someone else's. All this, the polar opposite of what I was hearing and seeing exactly 6 years ago December 2009, when I was seeing horrible, pre-diagnosis, scary you have something really wrong with you type results! Again, the crazy ironies in my life.

I just couldn't believe my eyes the last time I met with my Doctor. I kept looking at the screen with her, and saying, "Really?! No Way! Am I seeing that correctly? Has my IgA REALLY come DOWN? And my WBC's! Whaaat??? They haven't been that high in I can't remember when!" And all my subsequent tests keep getting a little better each time. There must be a mistake! How can this treatment "fix" me up so FAST? (Ok, maybe it is the horse poop factor ;)

I know, I know, you're all thinking what a crazy stubborn idiot I was to not abandon Revlimid sooner, and why didn't my Doctors push me harder to switch? But back then, we agreed that it wasn't quite time to "panic" as my IgA and M Protein was a somewhat "stable" (albeit upward) roller coaster. I do reflect more now on how my oncologists offered, nudged, encouraged me to switch chemos during 2015. Seriously, it was me, being a scardy cat of new yucky side effects. (So far, Kyprolis side effects are quite similar to Revlimid side effects.)

So here's the fun facts:

My IgA for 2015
Standard range = 70 - 400 mg/dL

1/13/15	1340
1/26/15	1450
2/23/15	1250
3/25/15	1360
4/20/15	1080
5/18/15	1320
6/2/15	1570
6/16/15	1630
7/20/15	1620
8/20/15	1530
9/13/15	1770
10/18/15	1890
11/18/15	1440 (after 4 Kyprolis infusions)
12/2/15	862 (after 6 Kyprolis infusions)

 OMGeeeezzzz look at that beautiful December number!!! It's only 3 digits!


M-PROTEIN, SERUM
Standard range = 0.00 - 0.00 g/dL
1/26/15     1.25
2/23/15     1.20
3/25/15     0.96
4/20/15     1.14
5/18/15     0.88
6/2/15       1.13
6/16/15     1.42
7/6/15       1.19
7/20/15     1.26
8/20/15     1.01
9/13/15     1.37
10/18/15   1.58
11/18/15   1.12 (after 4 Kyprolis infusions)
12/2/15     "See comment/no comment/no result"
... "Protein of restricted mobility detected in the gamma region. Immunofixation was not performed on this sample because the elctropherogram remains unchanged from the previous report which was....
"IgA Lambda monoclonal gammopathy". Hey I had forgotten which sorority my myeloma was in ;)
 And:
"Quantitation of M Protein may not be accurate due to coelution with beta" (maybe I have Betta fish growing inside me ;)
Saaaay whaaaaat???!!!

And to further shock me-
My WBC's are now hovering in the 3's!!! Whereas I couldn't get out of the 2's forever previously. Normal Range = 4 - 7

And to further shock me-
My ANC was previously hovering at 1.0 or below, and I was becoming "Neutropenic" and almost put on regular Neupogen shots!  My ANC is now hovering @ 1.8 Normal Range = 1.8 - 7.7

I loooooooooooooooove you Kyprolis + Dex! You ARE my magic elixir!

 Love these chemo transport bags!

But they are "too contaminated" to keep they say.

I guess us patients ask about them all the time lol.

Note the "J" station I was assigned!

I have plenty more Stats, but you get the point :) Kyprolis + Dex is pummeling Myeloma! Well, let me temper that just a bit: My IgA is still over 2 times the HIGH end of normal, but hey, I'll take the 3 digit category any day over the creeping up 4 digits just a month ago. Remember just a month ago, I was even SENT AWAY from doing chemo, as I was so immune compromised and NOT strong enough for treatments! (See November 5, 2015 blog post for that crazy story!) 

 LOL Myeloma's running scared now!

When I saw my improved numbers, I just wanted to SCREAM! (Steroids of course having a HUGE impact on my hyper-excitement.) But I zipped my trap, and kept reviewing and reviewing my paperwork, as I whispered to my IV infusion nurses what was going on, and why I was so electric! I felt so bad with all my good news, as there were some pretty sick patients in the chairs just adjoining me. New patients, scared patients, hairless patients, sick (looking and feeling) people... and here I am, all buzzzzzed up on Dex Roids with rosy cheeks, still with hair, and of course, I always have make up on, so I don't look like "death warmed over"!

It turns out, as it always does in my life, I met a man in the chemo lab who lives in my area. We're both in education as he was a high school teacher, and we have tons of local people in common and (of course!) we have the same oncologist. He's pretty off the wall and even more chatty-jokey than me, so when he overhead my nurses talking about my good news, he said to them, "Hey, can I get what she's getting! Just move her IV over here to me, and gimme some of that magical serum!" He has AML, not Myeloma, but I bet he'll ask "our" Doctor if Kyprolis would work for him.

Who ever thought I could be so in love with a chemical!

 After my infusion, the lovely Dex steroids buzzzzz had even more kicked in. I've never been a drinker, but I'm guessing what I feel, is what party-ers feel after a few "good" drinks or shots. I just wanted to run and jump and scream my good news throughout the clinic hallways! Jim's following me out, not able to keep up with my animation and antics! It's really so crazy how one day I can hardly get out of bed, and the next day on Dex, I feel like my ol hyper crazy fun self. I sure know "bi-poloar". 

 Dex Buzz!

I stopped by the Oncology Pharmacist's office to mention my surprising news, and confirm I was seeing my reports accurately. He smiled and said, "I know. I've been following your results." So I asked with run-on sentences, "What does this really mean? Will I be able to reduce the dose, maybe come only once a week, or only twice or once a month now?" He smiled and said, "Well, not so quick Julie. You realize if we change your regimen too soon, or reduce the dose too soon".... he went on to say... "What we have you on is standard protocol"... "You don't want to change what is currently working and reducing your levels of Myeloma"... "It will just come back"...

Oh yah, that's right I acknowledge. What a crazy Dexed-up nut I am. Of course, stupid me! If I stop this magic poison going into me, successfully killing off myeloma, boom! myeloma comes roaring back! Ha, I laugh at myself. Calm down blondie. Reminder to self: I haven't even been doing this for 2 full months yet. I'm only on month #2, infusion week #2. Next week is infusion #3 week, completing month 2. Ha! My steroid buzz got me a little too animated and unrealistic. We did conclude the conversation, that in the future, when my numbers stabilize (if they do), after following the RECOMMENDED PROTOCOL, if I am doing well, perhaps I can be reduced to a "maintenance" dose! Lest I forget, Myeloma is INCURABLE, and I will be on chemo for LIFE!

Hahahahaa! Me!

So driving home, I'm just repeating OMG over and over. I can't believe my good fortune and how wonderfully my body is responding. I am just so blessed and so lucky, and this is all so incredible and surreal. I just love you Kyprolis and Dex! You are my magic! I celebrated with gulping bottles of hydrating water, visualizing dead cancer cells flushing out of me. And when I got home, I couldn't wait to get outside and feel my aliveness, even though it's been super bitter cold recently. Thank you Dex-energy-fake-high for letting me pretend to be normal and celebrate by feeding my horses, raking their "apples" and just breathing in LIFE!!!

All this so incredibly ironic compared to what I was hearing and experiencing EXACTLY 6 years ago to the month. 2009 Death sentence vs 2015 extended Life hope. I have waaaaaay too much life left in me. Way too many things still to accomplish. Way too many people and creatures to impact. And way too many Bucket List items left to accomplish!

Thank you Amber (Wild Horse Diaries) for this awesome picture! 

Another beautiful sunset as I was walking out from my best lab tests ever!

And I almost forgot to mention, today I had an EKG/ECG in Cardiology, then a full Skeletal/Bone Scan prior to my Kyprolis infusion. I'm also scheduled for my 6th, yes SIXTH for 2016, Bone Marrow Biopsy right after New Years, on January 4, 2016.

Thankfully I was loaded up for 2 days on 10mg Dex to get me through all this exhilarating news, tests and tests and infusions. Tomorrow, and for 2-3 days, I crash. And do I crash, ugh... My wake up call reminder of how sick I still really am. But today, I'm a Happy Camper!

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

This Day 2009 vs This Day 2015

Hello Everyone!

OMGeeeeezzzz!!!!
I have some great news! But that will come later on 12-15-15

Because I must first note the fact that 6 years ago today December 14, 2009, was my very first STUNNING, UNREAL, UNBELIEVABLE, SERIOUSLY I'M IN THE WRONG PLACE, There Must Be a Misunderstanding, FIRST APPOINTMENT IN HEMATOLOGY ONCOLOGY.
This place has been my medical second home for 6 crazy years now. So hard to wrap my head around this 6 year cancer journey I've been on, and that I really have myeloma. I was a really sick girl 12.14.2009, and had NO idea what was ahead of me. Simply amazing I am still here 6 years later.

But when I checked in at this very same counter today, with my favorite check in ladies, and headed to the Chemo Lab, with my incredible chemo nurses, for Kyprolis infusion #8, week #2, month #2, it was a very different emotional experience than 12.14.2009.

I've been through sooooooooooo much since 12.14.09! Much of it reflected here in this too honest, sad, funny, poignant, ironic, philosophical, too wordy, reflective, hopeful, sincere blog. And I deeply thank all of you that have taken an interest in my story and checked in to read my musings whenever you have.

December 2015 has brought very different news than December 2009! I truly am incredulous about the news I will share tomorrow, 12.15.15
I should have been braver sooner!
Kyprolis + Dex is currently saving my life, as Revlimid + Dex once did for so long (and Cytoxan and Melphalan prior to SCT).

This paperwork holds very encouraging statistics! I looooove you Kyprolis, and you too Dex, even though you make me feel falsely good for 48 hours, then crash me like harsh waves against a rocky, jagged, painful cliff.

So after we came home today from my Kyprolis infusion, even though it was super cold outside, I bundled up and went outside to feed, pet my horses, and "clean" the arena (don't tell my oncology staff lol). I feel so alive today! (Yes, thank you Dex steroids!) Grateful to be breathing in, inhaling the fresh crisp air, while marveling at my new lease on life, and how blessed and fortunate I am to be responding to treatment so quickly! I love you Kyprolis! Thank you for giving me another chance!

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

 

5 Becomes 6 This Month

Hello December!
Hello Month that represents so much, to so many, for so many different reasons. For me, December is Diagnosis month. It's hard to believe almost 6 years ago I was diagnosed with Myeloma.
6 years ago I was really sick, and didn't know it.
My cells knew it, but I didn't know it.
6 years ago, December 14, 2009 was my first Oncology Hematology appointment.
6 years ago, Doctors began to talk to me about serious medical issues that totally blew me away. I was in disbelief I had anything seriously wrong with me.
6 years ago this month my life changed FOREVER! Still hard to process this cancer diagnosis, but so grateful I've made it 6 years past the "OMG say WHAT? MyelomaWho?" conversation!
It's pretty impressive... all things considered!

So it appears that Kyprolis and I are getting along ok so far, with the predictable bi-polar boost from my ol friend Dexamethasone. Preliminary tests, after just a few infusions, showed my IgA and M-Protein coming DOWN a bit! But I'll know my full first month results when I meet with my Doctor on Mon Dec 7, which also begins my 2nd month of Kyprolis. Perhaps I should have waited to post my results, but I'm nearing the end of my symbolic #5 posts. So here I am 12.5.15, posting on one of my few remaining "On the Fives" days!

And as always in my life, my connected connections never fail me! Have I mentioned that one of previous students is also now one of my chemo nurses? Seriously, not kidding! Jonathan was my student over 10 years ago, and we re-met again when he transferred to Oncology Hematology earlier this year. Such a wonderful guy then, and such an AMAZING nurse now!!! Thank you Jonathan for all your GREAT care!

Here we are, just before he hooked me up

After the heart wrenching memorial-funeral service Nov 21 for my beautiful first cancer doctor, Dr Lee (see my previous post), the following day was my birthday. Again I ponder... I am here, she is not. Seriously, the ironies of life never cease to confuse me.
So after much discussion of what to "do" for my birthday, (because I just don't have the "helium" to do a lot), we all piled in the RV and Scott expertly drove us to the beach. It was a spectacular CA coastal day, with the beach temps in the 80's! As you've probably figured out by now I can't wander too far from my bathroom, so this was the perfect way to enjoy the day outside, with my personal pottie not far from my adventures. Being the nature lover I am, celebrating my special day outside is always my preference, and nature sure did not disappoint! The only thing that would have made this amazing day more spectacular, would be if our horses were magically trailered to the beach... but that's just not an option any more...

Here's a slice of our beautiful day:

 The Girls between the Gulls

 Just us Girls

 We had "Red Cups" stocked in the RV
way before they were trendy!

 Just me reflecting on my life

The ironies of life~
Beach today
Chemo tomorrow

Perfectly timed jump for joy!

Happy Birthday to me!

Spectacular sunset!

Just couldn't stop taking pictures

of this stunning sunset!

Me being grateful to be alive!

Me Ashley Jim

 Grandpa Hal even joined us

 The "kids"
and seagull poop

Thank you Mother Earth for such beauty
on my birthday

Seriously Spectacular Sunset!

What a cute cake they surprized me with!
I can't believe how my age correlates
with my diagnosis years!
* 56 *
5 becomes 6

Crazy stuff, this life!

 Hello beautiful Moon!
From spectacular Sunset
to this stunning Moonrise!

Kyprolis chemo begins again tomorrow. Month 2. 3 weeks on. 1 week off.

Mon Tues, Mon Tues, Mon Tues

I'll post my lab results soon, so check back on another 5 derivative :)  

Life... To Be Continued...


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