4 Years Ago Today...

July 2, 2010

Four years ago, I was admitted to City of Hope Hospital for my life-saving Autologous Stem Cell Transplant

Hello to "hermetically sealed" inpatient status

Good bye to freedom for a month

Ha Ha- my thumbs up status- I'm so naive!

Poor Jim looks like the scared patient to be,

Scott and Alissa, my clueless kids

looking just as pseudo-jolly and naive as me...

Up the elevator we went

Picked out a room with a view

Glove up, mask up

IV hooked up: life and death to be delivered through mainline tubes

Hugs, kisses, teary good-byes

I'm now alone in my sterile room... 

I don't know what's next... trying to stay strong... I begin to feel scared

My life-saving journey to death's doorstep begins...

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

Go Revlimid 10mg! You ARE My Magic Pill

Hi Everyone!
I received some VERY good news yesterday regarding my recent blood work assessing my current status on the 10mg Rev + 20mg Dex cycle!!!

Last post I lamented about Revlimid's static effect and feared ineffectiveness this go-round. But I am so happy to report that my results show my Myeloma NUMBERS ARE MOVING DOWNWARD!!! (Some CBC's and white counts not terrific, but my ol body is battling!) Yiippeee!!! Time for some "pony-pal" adventures on a "good day" !!!

IgA moved from a high of 1400 as recent as March, to a skinny 780 this month!!! That's a little LESS than 2x the high end of normal as measured by 70-400mg/dl . So thank you very much Revlimid + Dex, etc!!! I like our new relationship :)

Additionally, my M-Protein did the downward slide too!
From 0.99 in March, to 0.78 this month!

These may not be giant slides down the brewing Myeloma volcano, but hey I'll take any movement in the right direction, while still being able to maintain my "quality of life" and not be on mega-doses, or new doses with new side effects!!!

No doubt, everyday brings many physiological challenges for me, and my immune system is still really compromised, but I count my blessings and do what I can, when I can. I've learned to eat like a horse on the good days, knowing my GI issues will attack me on the other days. I've learned to change days or skip meds if I have an important event to attend, not to mention, not eat much at all, if I HAVE to be away from my bathroom!

Case in point:   I entered my cute lil Bucket list Bug in my first ever car show! I absolutely dreaded and feared the line up at 7:30am!!! So I barely ate on Saturday, and didn't eat at all on show-day-Sunday, until the afternoon, AFTER the show was over! Also I didn't take meds on Friday or Saturday so I would be ok for Sunday's show. Sssshhhhh don't tell I did that!!! But seriously, this is what I mean by QUALITY OF LIFE choices!!!

Here we are getting parked and settled in

 My darling partner in crime Kelly 

with her sweet Challenger

Huge thank you to my friends at Impression Auto Salon

for my Bug's super "spa treatment"! BabyBlue's shine is blinding!

 Wow! there were over 200 stunning cars

lining the streets in Old Town

 Jim, me and Scott

 Thank you Lauren for this adorable surprise!

This T says it all :)

And so I say good-by to June, reflecting on all my June milestones since 2010. This time 4 years ago, I had completed 6 grueling months of Rev + high dose 40mg Dex, recovered from IV Cytoxan's awful effects on me, was attempting to get used to my central line Hickman catheter, my hair was beginning to thin, I had completed 2 weeks of Neupogen injections in prep for my Auto Stem Cell Apheresis, and I was packing for my July stay at City of Hope for my Autologous Stem Cell transplant... little did I know what was ahead of me...

Cheers to Revlimid being my Elixir this month... we'll see what July brings... but until then, live life fully each day, smile, breathe, laugh, and never forget the "glass is (most) always half full" in my book, and I hope in yours too!

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

So You Think You're winning Myeloma

Hello loyal followers:  eekk, I really don't want to write what I'm reporting in this post, as writing out the numbers solidifies the facts and results I didn't expect. Call me naive, too optimistic or too hopeful.... but I was sure 10mg Revlimid was my magic pill back to Remission.

Heck, Revlimid brought me from 67% cancer to 10% in 2010 during my initial treatment prior to ASCT, so I "expected" this magic elixir to fix me up again. I really thought we'd see a considerable drop in my levels in a "good direction" this time. Well, not so much... and truth be told, I'm genuinely surprised my recent blood work revealed cancer is kinda winning. I say kinda winning, as my statistics aren't drop your jaw dramatic, but they show Myeloma is as strong as the chemo battling it. Rather than pummeling it into submission, Myeloma is holding steady (and creeping up), not going away this time. And yes, to those concerned that I am too lackadaisical about my treatment plan, this news kicked my butt.

And the #s are:
WBC's really low: 2.8 (4.0-11 scale) (Revlimid does contribute to compromising the immune system)
Platelets out of normal range now: 117 (130-400 scale)
M-Protein up again: 0.90 (normal = 0.0)
Beta Globulin Electrophoresis: 1.53 (0.65-1.10 scale)
Gamma Globulin Electrophoresis:  0.40 (0.70-1.60 scale)
IGA: 1110 (70-400 scale) and I keep hearing I am "high risk" IgA Myeloma
IGG: 296 (700-1600 scale)
IGM: 16 (40-230 scale) 

So the plan is: one more month (my request) status quo of 10mg Rev + Dex.
July will probably bring Rev up to 15mg, or out with Rev and in with Velcade, or try Rev + Vel + Dex.
Ugh, I am just not brave this time around, and I just want to feel good, and get back to "normal" (HA!). I am fearful of new side effects :/

At least I made it to Alissa's SDSU graduation last month!

I was able to attend my 4th 

Survivors BMT/SCT Celebration Reunion

at City of Hope, also last month!

 Dr Kogut, me, Dr Spielberger

 Dr Chai, me, Dr Farol 

My Stemmies are stored here

just in case I go for another Autologous Stem Cell Transplant

but at this time, the "risks" are greater than the chance of Remission

So that's my June story. We'll see what happens.
But for now, I am bummed Myeloma is being so obnoxious and proving to be a much stronger match for Revlimid's chemo powers then I anticipated.

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

Seriously GI system, just Calm down and let me Pretend to be Normal!

Well it's the end of May, and the last week of my 3 week 10mg Revlimid + Dex cycle.  Honestly, it's been a lousy week (month, year, etc) as my lower GI system has been rebelling. Against what, I don't know.

Actually, I have more lousy GI days then good days... but it's certainly all relative, I constantly remind myself... as in the BIG picture of cancer...  I am able to function fairly well... most days. But it seems like my GI system has ruled my life for years now. Who knew, I sure didn't know, that IGA immunoglobulins play such a critical role in the intestinal system... no wonder I always seemed to be so sensitive to foods, digestion, germs, etc, and then I get diagnosed with IGA Myeloma!

But, dang it... my plan was NOT to live life dependent upon my proximity to my bathroom!
I make plans, and cancel them
I hope to walk for a little exercise on Dex days, but I can only really walk in my own backyard, since I never know when "John" will be my best friend
I make plans, and cancel them
If I eat out... I never know if I'll have instant GI retalliation
I make plans, and cancel them
I schedule myself with students, hoping to make it into work, but then I can't... as I certainly don't want to be in my office chatting with students, then suddenly have cramps and have a "biological emergency"!
I make plans, and cancel them
My life: now centered around my GI functionality... make that, dysfunctionality! ugh!

Sorry if this is "TMI" (Too Much Information), but it's my reality this time round with Myeloma's recurrence/relapse. I had "issues" before, but I don't recall days and days and days of "instant processing" of food, like I have now.  I don't recall my 2010 chemo and meds affecting me quite like this, every week, every month. Sure when I was hospitalized for my stem cell transplant and had high dose chemo, every part of me was a wreck, including my GI system. But dang it stupid stomach... let me be!

I vacillate between, ok I just won't eat... thinking nothing in, nothing out. But that's dumb, and besides, I get weak, dizzy, head-achy, etc, so I eat, trying my normal healthy stuff, to bland, boring, plain stuff... but this week, it still went thru me. Jim even buys me delicious (lol) options of Gerber baby foods. That went thru me this week. Plain baked potatoes went thru me. Boring, no food value Saltine crackers went thru me. I tried good ol chicken-rice soup today. That went thru me. Shheesshh this has been going on since late last Sunday (and last month, and the month before, and before, etc). Dex and Rev often has the opposite effect, binding me up. So what's up GI system???

So I give up, give in, and later this afternoon, worried I had lost so many nutrients for the week and hadn't taken my Acyclovr, Mepron, etc for days, I decided to go for broke and tried a chocolate Ensure with my meds... and surprise surprise, so far so good! So hopefully I am suddenly better... gurgle gurgle, rumble rumble... only to start the med cycle over again with Dex tomorrow... then hello GI distress come Sunday, Monday on... ugh!!!

On another note, I found out today that my Myeloma neighbor learned his MM is back. He was diagnosed about 6 months after me, and thru our neighborhood grapevine we discovered each other's MM plight in 2010! Same medical team, same Kaiser facility, same meds, same Auto SCT at City of Hope, same Rev maintenance, etc. But he had remission for 3 and a half years!!! Sadly, welcome back to the treatment club buddy...

Between bathroom visitations, I rushed over and took my monthly blood tests today and have my oncology check up next week...
Let's see what story my Stats tell this month...

In the meantime.......... This makes me happy!!!

Pharrell Williams Happy ~ Happy Dogs (and a Cat) playing in Australia 

Hoping all is groovy in your lives!

Thanks for reading my rants :)

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

Thank You Revlimid!

So I always begin my blog musings thinking and saying I will be brief, and wind up being very long winded! But this time I really will be brief, as I rattled on so much on my last blog entry!

Here's Birdie intrigued by my water/pedialyte mix,

plus she loves to peck the keyboard with me as I type this. 

So CUTE!

I received rather good news yesterday at my monthly oncology appointment. My friend Revlimid is doing it's chemical thing well, and my IgA levels decreased! Go 10mg!!! And to think I was worried going from 5mg to 10mg. Ok, I'll cut myself some slack here, as 10mg in 2010 along with 40mg Dex, (along with all my other meds, along with being newly diagnosed) was quite the challenging adventure.

Numerically:
IgA from this most recent blood work was 1150 (70-400 scale).
That's down from 1400 in March/April (and better still from 1800+ Dec/Jan). Yippee!!!
That still puts me around 3x the high end of normal range, but I like the downward slide! I'll continue on the 10mg (indefinitely?), and if need be, bump up to 15mg and see what happens.
M-Protein = 0.81. Just go away Myeloma and leave me alone!!!

 Look who's hiding on Jim's beautiful rose!

So far, my side effects are tolerable... well kinda. I'm not a fan of being so tired and fatigued, but I'll take that over hugging "John" from hardcore IV infusions! I also have some buzzing, Neuropathy, dizziness, headaches, blurry vision and still some GI unrest, but not as bad as last month! Thankfully, me and food are a bit more friendly now.

Here's a great article where the author talks about his lowered immune system as a result of Myeloma and chemo affecting his immune system. Hello "normal" population, we are not OCD "germ-a-phobes" for fun... Viruses and Bacteria can KILL us! But that's for another tirade, another time...

Happy Birthday to the BEST hubby, supporter, caretaker, shopper, best friend, and overall loving tolerator of my situation. Scary thought who I would be, and how I would currently be... if Jim wasn't in my life!!! I tell him to stop caring so much, and take as good care of himself, as he does for me.

Our new saying:

Every day is a Bucket List day-

Heck, eat TWO desserts if you want to!

Almost looks like twin roses within the rose!

Jim has such an amazing "green thumb", 

not to mention our mutual love of nature and animals!

We are both so grateful for another year! Truly we are so fortunate to have the life we have with all the love and beauty that surrounds us! One of my greatest treatment challenges was being hospitalized in isolation for a whole month (for my stem cell transplant July 2010), as the closest I got to fresh air and nature, was the view out my window. Ugh, that was so awful for me. I cried my eyes out when I was wheeled out of the hospital, and breathed in summer...

Enough blogging, on to the birthday boy celebrations!

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

Potato Chips, Dark Chocolate, Spinach and future Rebellion!

Beware... Today is DEX STEROID day... aka ROID RAGE day so this post "rages" on and on and on... lol!

As I down more pills and meds today than I have fingers, I can't help thinking... and thinking and thinking (as I always do) ... WHY do I have incurable cancer? WHAT did I do to cause this? WHY me? I want the remainder of my life to be long, fun, fulfilling and silly! I'm too young to be thinking about how much time I have left, when I'm going to get all my rides in, and when my demise will actually arrive...

Over and over I have pondered the impact of stress and stressors. I do believe stress has a HUGE impact on our Bio-Physiology... changing, damaging, altering our inner chemistry and genetic profile, creating a ripe host for cellular mutations, aka stupid cancer. Most everyone I know who has been diagnosed with cancer (minus very young children), SIGNIFICANT stress has been a factor in their lives. (Those that know me well, know "the stressor" that stressed me out most of my life! But that's for an entirely different blog topic haha!)
  
And perhaps there IS an immune system connection with my life long hypothyroidism, allergies (food and environmental) and a short bout with asthma, and that crazy benign neuroma tumor (located in my lower neck/clavicle area) I had removed back in 1998? I'll have to look for research and studies related to those. Thanks though to extensive and continuing chemo, my 2010 ASCT, allergies are mostly completely non-existent, and haven't had any asthma since our cute pet rats passed on 15+ years ago. Yeah for chemo! Guess me and chemicals do get along well!!!

So what really is this blog musing about lol... reflecting on some pretty funny conversations the other day with my hilarious, rebellious colleagues. These blunt, boisterous conversations (so raw and authentic) are so amusing and thought-provoking to me, causing me to reflect on my lifelong personality perspective of: "Of course I will be SomeOne"! I've always been goal oriented, studious, career focused, super family devoted, and always wanting a "drama-free" zone around me! (Although there many that would take exception to this, as I am not one to keep my opinions to my self!)

I laugh at and with my colleagues (and you know who you are!), who so straight out, unabashedly share how you previously and currently live your life, so much more on the wild side then me! I reflect on my relentless quest for perfection, albeit, imperfect as perfection is. I contemplate my life's journey of personal achievement, to career success- which thank you very much Myeloma- for promptly reducing me to minimalist functionality, where I'm now just a mere fraction of a fraction, of my former self! F you Myeloma!

I laugh with them, at their spontaneous "WTF" life's philosophy, emphasizing and sprinkling their points with expletives! I'm humored at their wild and raucous experiences that I never had... I was always so dang cautious, conscientious, and consequence oriented. No booze, No drugs, No smoking, No wild partying, etc. Responsibility my middle name ! "What the F Jules!", she said. So I tossed caution aside (whoo-hoo!) and had a bag of potato chips and chocolate with them, and suffered later lol.

Make no mistake Myeloma, I've had a wonderful life, full of joy, laughs, success and irreplaceable events and memories! Thanks to my caring parents, amazing husband, fantastic kids, extended family and great friends and colleagues, there is not too much I would change... No I'm not without flaws, and yes I've done some dumb things, but tame and sane overall. But what if I had lived a bit more recklessly??? Would that have changed my "predisposition" to Myeloma? What's up with all the drunks, druggies, chain smokers, fast food junkies that live long lives, behaving badly? F u Myeloma... where'd my clean living get me? (ok, I have outlived my "high risk" stats, due in part to what little "good health" I had at diagnosis)

As our kids were growing up- Respect, Rules, Boundaries, being Mentally and Physically smart and making the "right" choice, was the core and foundation of our lives. As they moved into adulthood, college years, early 20's and beyond, our daily mantra was "Action... and Consequences", "look deeply before you leap", "never forget the potential outcome of your choices"!!! Well they're amazing adults now, and we have few regrets about our parenting (except we were too good, too nice lol). As they got older, we relaxed a bit, and laughed: "if you wind up in jail... make us your first phone call, but don't count on us to bail your A$$ out!" Harsh words we never had to test out!! We all ponder now what, if anything, they would do differently, and they too, think about being just a bit more "badly behaved" (especially Scott the cancer survivor). Alissa hasn't stopped playing yet! I was always so entertained when their friends would share their wild experiences with me: me thinking, wow, how stupid of you... but oh so fun your adventures are!!! Think Havasu... and you know the stories!

So this brings me to being a tad pissed off for most always doing the right thing and still being diagnosed with deadly incurable Myeloma !
I basically lived and ate really healthy
Tried to get a section of the entire food pyramid in, almost every other day
Always trying to be a "healthy anorexic" (eating well and watching my weight) 
I didn't drink alcohol, ever do drugs, or smoke
I drank herb tea, half-caff coffee, watered down juices, and never soda
Few fatty foods and of course, no fast food/junk food, very little animal products
Earlier on I didn't drink a ton of water though... maybe that's it!!! 
Perhaps it was my busy, busy, busy life with never enough sleep, committing to too much, being the ever present, "mom-counselor" to all...
Perhaps my "mid-life" braces, all those dental xrays, and not really eating right for those years, contributed to hosting myeloma?... as I found it challenging to eat with a mouthfull of irregular, sharp metal clanking together. To be honest, looking back at the years preceding my diagnosis, I really didn't eat as well as I imagined I did... dumb me! - why didn't I know of Ensure and nutritional drinks then!!!
Perhaps it was also the years of stress (good stress, bad stress, all kinds of keep it together stress), but lots of stress none the less, that eventually flicked the cancer switch?

Who the heck knows! ... I'll never know why Myeloma chose me, or why I created a body chemistry that invited Myeloma in, and gave Myeloma the welcome mat into my life
Perhaps I should have indulged more, not tried to be "so good" all the time
Perhaps I should have cared less about all the things I cared so much about
Perhaps my quest for the best, should have been more of the "less is more" philosophy I so often espoused

Oh well....
Cheers to a banana, cream of broccoli soup, sauteed fresh spinach for lunch today... and like a good girl, I took my morning and evening meds with a "delicious" vanilla Ensure.
I made us Breakfast for Dinner tonight, after I did 6500+ steps (thank you FitBit) around the barn to burn off some Roid Rage Energy. I made Jim a Hawaiian special: Spam and scrambled eggs, sauteed with spinach and hot sauce. Me, a tamer version minus the Spam, but with added spinach, avocado, and yes... hot sauce! Dex steroids make me (temporarily) "crave" spicy!

I splurged on dark chocolate today, petted my horses and scooped some poop. I breathed in deeply, including dusty manure residue, and inhaled sweet horse breath kisses. Take that stupid Myeloma!

So what's my point...
I think I'll take a few "wild detours" on my "next journey", and cuss a bit more too! And wear cowgirl boots more often! And take more rides on the "no stress express"!

PS- Revlimid 10mg is going well. No allergic reax so far. Tired, achy, etc, but okie dokie... blood tests and monthly oncology appointment next week. Not sure what I was worried about lol! Bring on the 15mg if necessary.
See you in May my loyal listeners, lurkers, and followers  :)

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

Climbing the Revlimid ladder: Hello 10mg and Beyond

Ok, Ok, I surrender! I accept I don't have magical Myeloma "curative" powers. I accept cancer is stronger than me, and I have to step up my battle. Silly me, I really thought I could just low dose pummel Myeloma back into Remission submission with minimal chemo dosages. HA! I'm mortal after all.

Inspiration from my sweet, talented friend Kathy!

Thursday I met with my City of Hope SCT oncologist Dr Spielberger (who is Director of the BMT/SCT Department). We agreed to step up Rev from 5mg to 10m to 15mg... onwards and upwards if necessary. He's thinking my system is different now, and I won't have the crazy allergic reax I did in 2010. Ok, I'm feeling brave. Be scared dysfunctional Myeloma contaminated plasma cells, here comes more Rev!!

Ten it is!
Ten after the 10th of April
Ten is Tenable!
Ten is no longer Tentative!

Then today, I met with my wonderful primary hematologist-oncologist Dr Lee, and she agrees with the plan. She fully understands my "go slow" perspective, and agrees with moving on to 10mg, then seeing how my numbers are (as I have monthly blood tests and monthly meetings with her).
We talked about how well I did with 10mg in 2010. How 10mg brought me from 67% cancerous Myeloma status, down to 10% cancer, prior to my Autologous Stem Cell Transplant, which then brought me to full Remission (CR) status August 2010. Ha! that's a lot of Ten's! (10mg in 2010 which = 10%)! Ten must be my magic number, right?!
I've been VERY lucky to never have had any "bone involvement", and all my skeletal scans have been NORMAL. Not to mention, my current CBC's don't look too bad either. I'm still sub-normal on Whites, but most of my CBC's are at the low end of Normal. Shocking after being such a sickie for Feb and March! Guess all the Gerber baby food Jim buys for me is keeping me healthy :)

Here's my Immunoglobulin status as of April blood tests:
IgG = 309 (normal range = 700 -1600)
IgA = 1390 (normal range = 70 - 400) I was 5700+ + at diagnosis!
IgM = 16 (normal range = 40 - 230)

M-Protein, Serum = .99 (Remission = Zero: 0.0)

More inspiration from creative and talented Kathy!

Ok Revlimid, let your 10mg Tenacious Tentacles tackle Myeloma into oblivion! I am no longer Tentative about moving to Ten mg :) Big deal right? And embarrassing, as most of you Myeloma warriors out there started on 25mg, and here I've been whining about moving beyond 5mg. Yeah, I'm a medication whimp!

Goodbye 5mg Rev! Just took my last pill of you with "Tenacious" Purple Cowboy:

Seriously great red wine (right Kerry and Henry!)

I'm just teasing!! water, herb tea and chemo for me.

So get to work Rev 10 and Dex!!! Get 'er done my ol stand-by Revlimid, so I don't have to try Velcade, Kyprolis, Pomalyst, Doxil, etc, and worry about new side effects... sorry, I'm a scaredy-cat and HATE feeling sick!!!

Hoping 10mg gets me well enough to continue my counseling Tenure, and I make it to our new offices Dec 2014 or Jan 2015?

 Thanks Connie for taking this great picture of me being silly!

I think I've Tendered enough 10 references forever, right?! 

Thank you so very much for following, reading, commenting on and tolerating my goofy posts.  Your visible and invisible support cheers me on!

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

My March Myeloma Madness

Hi Everyone!
First of all, thank you to my followers for your detailed replies and suggestions on my previous post! I truly, very much appreciate your comments and insights!!! Thank you to all my invisible followers too! I appreciate you checking in and reading my musings.

I'll (try) to make this short(er) than usual, as I will have more of an update after my 2nd oncology appointment next Friday.

 Here's me and sweet Abbie over a year ago. Just loooove her!!!

She's a death row rescue from the mean streets of LA

To be honest, I have been too optimistic (perhaps naive), trying to see my situation as better than it actually is... hence MY stubborn stupidity at remaining on low dose chemo. So after my oncology consult this past Thursday with my City of Hope SCT Doc, who very nicely (but seriously) let me know that the low dose Revlimid I am on needs to change NOW, if I am to make an impact on the increasing levels of cancer within me. Ok I get it. Myeloma is winning right now.

Dr Spielberger (who is Director of the Kaiser-City of Hope Hospital Bone Marrow/Stem Cell Transplant Department), clearly let me know that I should be doubling(2x), tripling(3x), quadrupling(4x), quintupling(5x) the level of Revlimid I am on. And if Rev and Dex stops working for me, we'll move on to all the other Myeloma mashers!

I laughed when he wanted me to jump from 5mg to 25mg ! ahahaha Doc... kill me fast! I reminded him of my death defying allergic reax in 2010 when we went from 10mg to 15mg. I quickly developed a lovely blotchy, patchy, raised rash moving rapidly over my body. I looked like my Appaloosa horse RedBear! I had to eat Benedryl like candy and we immediately stopped the 15 and went back to 10, and stayed there for the remainder of my initial 2010 treatment. Doc said ok, ok, we'll start slower... how about trying 15 next RX?? Hello.. NO, I said... let's be gradual here and go from 5 to 10 and then see if I can tolerate 15. He's very amused by me, in a good way :)

Why this now, after a few months of (minimal) success? My Myeloma contaminated IgA immunoglobulins haven't stopped rising (4x the high end of normal), and my M-spike is spiking more. And you know what??? I secretly knew. How? I've been a sickie most all of March. (I have to always remind myself and others: MYELOMA IS A COMPROMISED IMMUNE SYSTEM CANCER! So no wonder I am always sick! duh Julie!)
I only went in to my office a few days this month, and the times I did, I shouldn't have. Last week, the one day I went in, I was so dizzy and tingly (from hardly eating for a week), I thought I would pass out!!! I told my sweet mom/daughter student appointment that I felt faint, just in case I did a face plant on my desk!

First I had a crazy sinus fever thing for over a week to 2 weeks, then a week-ish later, I developed lower GI volcanic issues... where, (sparing you the gross details), my bathroom became my permanent residence and office. I thought, this will pass, probably related to medication overload. So I contacted my local oncologist and we reduced the levels of Mepron and Acyclovir (even though she didn't think that was the cause, but wanted to see if my GI would calm down). Well it didn't, except on Dex steroid days. I even tried going out to dinner with friends, and again, sparing you the details... had to leave the restaurant FAST, ditching them and Jim, racing home and "praying" I wouldn't ruin Jim's car ... BARELY making it to the bathroom... ugh... that was sooooo awful!!! I've lost 5 pounds this month, but that's ok. What mid-life girl doesn't want to lose a few pounds? Well, not this way, thank you very much stupid Myeloma challenged immune system!

And so, realities are (finally) setting in:
I have cancer
I'm a sickie
I feel lousy more than I feel good
I can't do much of anything, as I have to stay close to my bestfriend "John"
Cancer is winning
Myeloma is stronger than me
My internal Army, Navy, Marines, Air Force, needs better "ammunition" asap!
My immune system continues to fail me
I have felt yucky most all of March
And this... is my "March Madness"

But I will battle forward and increase my friend Revlimid
I will eat Benedryl like candy if I have to (I like that it's hot pink!)
I will TRY to accept that I have cancer, and I am not the Julie I used to be
And I will savor the good days, and be pissed at the bad days, but I will never give in Myeloma!
You hear that Myeloma...  I'm not giving in or up. I'll fight until I can't !!!

Last Sunday "selfie" when Dex steroids temporarily helped me feel better

for a day or so... then right back to GI drama.

Hello Dex again today, please let me eat and pretend to be normal!!!

Simple explanation of IgA immunoglobulins. Funny how certain article realities finally sink in!

LOL- not so short post after-all!!!
Thanks for reading and caring, and I will update on my medication plan in a week or so.

Thank you followers!!!

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

March-ing Forward update

Well hello everyone!
I just realized how long it's been since I've updated my blog! My sincerest apologies to those that check in regularly and worried about me. Thank you for caring as you do!

   This is one of my all time fave pics of me and RedBear!

 
Taken by my amazingly skilled and creative photographer friend Kathy B

So this month's lab results revealed nothing much new from last month's results. I've kinda "flatlined" at the current levels of Revlimid (5mg) and DexSteroids (20mg) I am on. My IgA went up about 60 points (not huge, but not good) and my M-protein/M-spike went down only .07 points (tiny, but good). This is all quite negligible though. Bottom line... if I want to be more aggressive with bringing my myeloma numbers down, and rid my body of cancer, I will have to double up on my dosage levels pretty soon. At this time, my oncologists are leaving this decision up to me.

Each appointment, we discuss whether I should/could be a candidate for a second autologous stem cell transplant. At this time, both my oncologists feel the outcome would NOT justify the risk of putting me through that again. In other words, they don't think I will reach remission again, and there's really no point subjecting me to the intensity (and potential dangers) of another ASCT.

I will meet with my City of Hope (transplant) oncologist towards the end of the month, and we'll see what he says about all this.

So given the circumstances... what would you do???
Should I just mosey along at the levels I'm at since they don't bother me too much (except dealing with fatigue, intestinal issues every other day, neuropathy, being immune compromised, etc)? Remaining at these lower levels is definitely not quickly obliterating myeloma cells from my body. But raising the chemo levels to do so, will definitely impact my already impacted "quality of life" (and that does concern me).
To some this may not sound like a big deal to double my chemo levels, but I had a severe (life threatening) allergic reaction to higher doses of Revlimid back in 2010, during my initial treatments. I'm not looking forward to the "unknown" future chemo side-effects coming my way.

Currently, I am still able to work a bit (which I still have much passion for!), and I continue to be able to do a fair amount of the things I always did: (hanging with my horses, doggies, kitties, driving my ol Beetle when it's drivable lol, occasional day-trips with friends, and of course enjoying life with my amazing fambam!)  Although my energy level is greatly reduced, and to be honest, I really only feel good a few days a week... but I get by, and practice one of my fave mottos:
"Fake it, til you make it" !

Birdie cracks me up and always makes us smile!

My oncologists reassure me at each appointment, that there are several new generation myeloma treatments since my 12/2009 diagnosis. They are confident that if the Rev/Dex combo loses its effectiveness with me, they have other options in the treatment pipeline for me. (And I read voraciously online, so I know what's happening regarding the latest treatment options.) Yay!!! for all the brilliant medical researchers, chemists, oncology teams, pharmacy companies, etc, extending us "Myelomers", lives!!! Thank you!!!

So all this always make me think... what should I be doing with my life?
Status Quo? Stay the course, stay the same, maintain my current "new normal"? Remain in familiar (safe) territory on this low dose "comfort zone"? But unfortunately, this allows Myeloma to continue to multiply within me.

Or is it time to "radically" change my life, and do now what I may not be able to do in the coming months/years... (in other words, get on with the "bucket list", re-do Hawaii, etc!) ... and then get on with increasing/changing chemo levels and types?

I know many feel uncomfortable when I address the "terminal", "incurable" aspect of Myeloma... but to me... it sure would be helpful to have an idea if I am living in ignorance right now regarding my (perceived) longevity timeline. If I could "know" how much or how little time I have left, or how much "usable", feeling-ok time I have left, that might just influence me to make some changes in my current lifestyle, as I naively feel I have tons of time left that I "know" I actually really don't ...

Did I ever mention that I treated myself to this new tackroom

as my Remission celebration in 2011. Represents so much to me

and one of my all time fave views!

Time to eat some ice cream, or actually brownies sound good, (and not care about fat and calories!) It's going to be beautiful this weekend and me and Dex are headed for our love/hate roller-coaster ride for the next several days!

So tell me, what would you do...

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

Low Dose Treatment Reality Check

Dear Myeloma, 

You're trying to win, but I'm going to outsmart you!

You're trying to ruin my life, but I'm not going to let you. 

It's still hard to accept you are real in my life, even with everything I have gone through. 

Talking about you MYELOMA, saying the word CANCER, still is surreal. When people ask about me, I talk about you and how you affect me very matter-of-factly, like I am reporting about someone else. It's all still just an out of body experience... even 4 years later. I'm still trying to be Julie before diagnosis.

 

And so when you returned Myeloma, after I scored REMISSION over you, I still thought you were not for real in my life. I still thought one of my Oncologists would one day say, "we are so very sorry Julie, we misdiagnosed you! You are just fine! We apologize for mixing up your medical records with another Julie.

When you returned last year Myeloma, boldly invading my immune system and trying to dominate my fragile physiology, I really thought this minimal medication regimen would again stomp you into oblivion. I keep naively thinking I'm different; that the normal rules don't apply to me.. ha!

Well you have humbled me again Myeloma

You have shown me how tenacious you are 

You have shown me that I need to step up my battle and pummel you with greater chemical intensity

But don't forget Myeloma, I will not let you win!

Yesterday, at my monthly oncology appointment, I found out good news and bad news. I found out that my current diet of medications is having a bit of an impact on you Myeloma:

I found out that my IgA Immunoglobulins have basically stayed the same since last month, decreasing only a tiny bit 

I found out that my M-Protien, M-Spike has increased a tiny bit.

Emphasis on tiny bit for both...

So Myeloma, I found out that it's time step up the battle against you! That the current "low dose" levels of Revlimid and Dex will need to be increased, if I am to send you packing again Myeloma. I must accept that you exist in my body, and you're trying to kill me. I can't pretend you don't, and that you'll just magically disappear. 

Watch out Myeloma, I'm bringing on the higher dose arsenal to have a more powerful impact on beating you!

At this appointment, I asked my oncologist if we could go one more month (February) at the 5mg level of Revlimid. She understands the issue of "quality of life". She remembers my severe allergic reaction to higher levels of Rev (15mg). She also mentioned there are several more Myeloma treatment options now. She is very kind to me, and very reassuring. I read a lot online, so I know I have other chemo options. I know I will have to step it up. I know this is a forever battle. I don't like it, but I know it. And honestly friends, I'm just a bit scared of where all this going... but don't tell Myeloma I said that!

It was a beautiful day yesterday after my appointment. 

I (try) to embrace life fully, everyday. 

I will not let Myeloma limit me. 

 And so, I went for a little soak up life nature walk with my dear friend Kathy and our little doggies Hanna and Portia (who met many friends along the way)

I breathed in life, and stopped thinking about you Myeloma. 

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

New year, not so new meds, and the old plan is ok with me!

Happy New Year Blog Followers!
Hoping your 2014 is off to a wonderful start for you and yours, and great things come your way this year!

Funny how old aspects and milestones of my cancer life randomly hit me. As I just wrote 2014, it suddenly sunk in that I have had the formal diagnosis of cancer for 4 years now! Who knows how long it was brewing within me prior to diagnosis..., making the 4 years into 5, 6, 7, double? triple? years ... I'll never know the what, when, why, how and actual trigger of Myeloma... but that's ok. I have accepted that I have an incurable, terminal cancer, or in softer words, a "chronic illness". Some are bothered when I refer to my situation as terminal, and they quickly say, "well you know Julie... everyone is terminal"... ok... whatever makes them feel better... I live with my reality. 

Seriously though, I am so grateful I am still here. Every morning I wake up, I really do take a second breath of realization, that I AM HERE... that I woke up to embrace another day!
I feel fortunate for the "quality of life" I do still have considering the circumstances and what I could be feeling and enduring.
When people ask how I am, I generally reply "ok". Not bad for someone in my situation. I'm here (wherever that here/there might be), I am vertical, I am functional, I am able to engage in life/work in small doses, and I am tolerating my new chemo regimen, and most importantly, I am not hugging a toilet !!! Truly, I feel so grateful for the little things in my world, I am still able to embrace daily. 

And I will always feel so blessed for the medical insurance I've had, that continues to provide me with what I know to be, excellent medical care and a wonderful team of caring Doctors and Nurses. Lucky me!!!

And so on to my current 2014 treatment plan and stats:
Check out my blog entry from November 18, 2013 for a pictorial of my medications.

I am liking only doing 20mg of Dexamethasone steroids only ONE day a week. So tolerable compared to my 2010 initial regimen of 40mg 4 days on, 4 day off!!
The current low dose 5mg Revlimid is also quite tolerable, although fatiguing and tiring, and bit of neuropathy is back.
Thankfully, both meds have put a detectable U-turn in Myeloma's forward march!
My immune system remains challenged... so please stay away from me if you are a sickie, or around anyone that's is or has been sick!!!
The combination of all the meds do make me feel like someone has punched me in the stomach some days, but again, I feel so fortunate that I tolerate the meds as I do. As a matter of fact, I need to go take them now... be right back...

My most recent status in number:
IgA = 1890 for December
January's blood tests show IgA = 1240
Still high, but I'll take the downward slide!
(Normal range is 70-400)
Goooooooo Revlimid and Dex! Stomp and chomp those Myeloma cells!!

M-Protein was 1.40 in December, and January's blood tests show .84
This measurement detects the existence of Myeloma in my blood plasma
(Remission = 0)
But I'll take this, thank you chemo and steroids!

So in summary, we are not being super aggressive with the meds, as I value my quality of life and don't want to feel horrible from high dose meds. But the low dose I am on, is WORKING!!!

I always visualize the chemo and steroids in my system gobbling up the cancer cells like "Pac-man" ! And I just stumbled on this timely and so relevant element of the game:
I quote from Wikipedia: "Pac-Man was designed to have no ending – as long as the player keeps at least one life, he or she should be able to play the game indefinitely."
Well that sure sums it all up for me... keep one life... play indefinitely, no ending!!! wow!! never knew!!! Take that Myeloma!!!

My Kaiser-City of Hope oncologist did discuss the pros and cons of a second (autologous) stem cell transplant, but we're going with the chemo meds first. Just something he wants me to think about, as they weigh the pros and cons of putting me through that again, noting that the outcome may not be worth the risk... Besides, there are several new next generation Myeloma targeted chemos that I haven't had the pleasure of ingesting or injecting yet... so I am comfortable knowing I have several Myeloma devouring options in my arsenal!

Happy New Year to all of you! I am so grateful for your friendship and support!

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

4 years and counting... still counting... will continue to count... never stop counting!

December 30, 2009
Is a day I will never, ever forget...
I have forgotten most of what was actually said that day...
That day I was diagnosed with Multiple Myeloma cancer
December 30, 2009, the day my life changed forever.

Lot's of important words were spoken, but I heard very few of them
Jim heard very few of them
Mostly we heard: "I am so sorry... YOU HAVE CANCER"
Your bone marrow biopsy results were not good
The samples showed you have 67% Cancer

You have cancer... a blood cancer
Multiple (? what ?) Myeloma (? who ?)
In the bone marrow
In the blood plasma
High risk cancer
So sorry...

You need treatment immediately (seriously?)
Platelets, blood, dangerously low white count
Immune compromised (like bubble girl status?)
Prescriptions are ordered for you (like now? ... like today?)
Tests, scans, bone marrow, blood samples, anemia, platelets, CBC's, Immunoglobulins, M-protein
Blah, Blah, Blah, Blah
Cancer
Cancer
Multiple Myeloma (my new vocabulary word!)
Cancer
Blood Cancer (no way... not me... I'm healthy, I've lived healthy, I did all the right things!)
Cancer
Multiple Myeloma
Immune Compromised (huh?)
You are not well (I'll just eat better... I promise!)
You need to be treated now (as in now? as in it's almost New Year's Eve !)
Immune system cancer (you cannot risk getting sick from others)

So sorry, my kind oncologist apologized
So sorry to spoil your holiday
So sorry your cancer is so serious
You have High Risk Multiple Myeloma Cancer (I'm too young... I have too much left to do!)
We are here if you need anything
Call us if you are not feeling well... go directly to Emergency... don't wait...
Let's get your medications ordered
Cancer
Multiple Myeloma
Blood Cancer
Sick... need treatment now
Chemotherapy
Pills
IV
Stem Cell Transplant
Hospitalization
Cancer
Multiple Myeloma
Blood Cancer

My head is spinning
This must be a mistake, my results surely were confused with someone else's
I cry
I laugh
I say NO WAY, Not Me!
It's all so surreal
Jim is very emotional, his eyes are teary
He is speechless, just nodding
I'm stunned, numb, having a true "out of body experience"
OMG I have to tell my family... I have to tell people, a lot of people... I, Julie the Invincible, has CANCER!
I cry
I laugh
I am numb

~ ~ ~ ~ ~

 Here we are back in 2009

when I had NO idea 

of the monster multiplying within me!

 ~ ~ ~ ~ ~ ~

December 30, 2013
Yep, cancer is real
Sadly, I now know what all those medical-cancer words mean
I get it... I Have Cancer
Incurable Cancer

But I am still here Myeloma!
4 years since that shocking, life altering conversation...
I made it 4 years since diagnosis!!

And you know what Myeloma??
I plan to be here for a long time!!
I plan to outlive you Myeloma!!!
My 2014 New Year's Resolution is to outlive you Myeloma!

One sleepless night (which is really every night) I had a sudden thought...
I'll go back to my pre-cancer, pre-Myeloma self-visual of being that little old carefree lady walking her little old pony down the road... thinking it's a goat, or a chicken, or a dog, or a giraffe! 
I'm planning to be really, really old... again!
Yes! I am planning to live a long, long, long time!
Take that Myeloma!!!

That's my 2014 New Year's Resolution!

Happy, healthy, successful, playful, living life to the fullest, New Year to all of you!!

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

Current stats... just go away Myeloma

Hello everyone, and happy almost holidays to all of you that follow my blog :)

December is a month of reflection and recollection for me, with a lot of original Myeloma diagnosis milestones:
Dec 14, 2009 first Hematology/Oncology (I'm in the wrong place) appointment
Dec 18, 2009 first surprise, why me, shocking bone marrow biopsy
Dec 30, 2009 totally unexpected Myeloma C A N C E R  diagnosis

I am feeling a bit melancholy... as being re-diagnosed and out of remission so soon has hit me differently than my initial diagnosis... but enough of this... and on to my recent statistics.

Had my monthly oncology appointment on Monday and even with being back on Revlimid chemo and Dex steroids and all the other meds... my Myeloma markers still increased:

Specifically my IgA immunoglobulins are now 1890, up 400 points from just last month, and more than double what they were this summer when I came out of remission. On Kaiser's scale, normal range is between 70-400

My M-protein (M-spike) is now 1.4, up from zero after my autologous stem cell transplant in July 2010.

My oncologist wants to double my Revlimid dose, (from 5mg to 10mg), but I said no thank you, let me enjoy the holidays without increased side effects and possible complications. My initial 2010 treatment started at 10mg, with somewhat bearable side effects. But when we increased to 15mg, I wound up with a serious rash and other dangerous side effects, so we quickly backed down to 10mg.

Onward the battle goes...

And when this awful CA Artic Chill disappears

I'll join my darling pups for some sun !

They make me smile

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

Happy Birthday to me... some Refections and Realities

Happy Birthday to me! I made it another year!

11-22-2009 turned the big 5-0... then one month later...
12-30-2009 officially diagnosed with Myeloma
11-22-2013 made it 4 years since cancer invaded!!!

So on this 4 years post-diagnosis-Myeloma-is-now-back-birthday, I can't help reflecting a bit on Myeloma's impact on my life... (I probably bore you with all my reflections lately!) Truly, I have always been a very positive and optimistic person. Cancer hasn't really changed that very much. Those that really know me, know this. I am basically the same Julie I was all my life, just a bit tamer, more tired and fatigued now, and honesty... more limited in overall mental and physical energy. Tamer also, as I am not quite as sarcastic and hilarious as I used to be. Cancer took a bit of my silliness and frivolity away :(

Many question how I can stay so optimistic, positive and happy (not to mention, still working), under current out of remission status. ... which leads me to a funny sidebar here: when people who haven't seen me in a while ask, "How Are You Julie", and I reply, "ok, .... but not sure if you know, ... I am out of remission now?" Often, sadly-funny, their reply is, "Oh that's WONDERFUL news, so glad to hear this!".... Huh???!!! ... oh boy!!!, they must have totally misunderstood what I said, and completely missed the context of "OUT". Most often, I just let it pass by, and giggle internally to myself, as I know they would be mortified if they knew the mistake they made! But if the moment allows, I say... "I don't think you heard me correctly... "my cancer is BACK, and I am OUT of remission" ... blah blah ... and they are then horrified of their mistake... we laugh, chat and "air" hug.

Anyway, back to what I was jabbering about... so on this 4-years post cancer diagnosis birthday, I am still positive, happy, optimistic and very much alive, and living in the moment as much as I can! (Especially since I took my Dex steroids a few hours ago! wwhhhhheeeeeeee my heart is pounding and I think my head is going to blow right off my brain stem!!!) I see everyday as a bucket list day!!! No more waiting!!!

What HAS changed since my cancer diagnosis and current OUT of remission status?
I no longer try to be all things to all people.
I am ok now saying, NO thank you. Not easy at all for me, but I have much clearer boundaries now.
I no longer have the Julie-can-do-it-ALL-agenda.
Less is more for sure now... what little I do now, is big!
I no longer feel the need to accomplish everything and appear to be handling everything.
I have given away power and control and truly live today, for today, and I am a bit more me-oriented.
I am not trying to be wonder-woman anymore.
I don't get a lot accomplished every day... and I am learning, that's ok.
Have another cup of herb tea Jules!

ha ha! posted to my facebook by a dear friend of mine!

But... I am not really ok with not being ok, but I do accept my status more realistically now.
I don't like not being ok, I really dislike feeling sick all the time... but I have little control of that now.
If I don't feel well, I don't push myself.
I no longer feel like an incompetent loser if I don't do it all on the home-front or work-front
I used to impact a lot of students per day... a lot!
If I impact one or two or a few, that's ok... I still matter in this world.
I stay in bed longer, if I feel like it
I stay in PJs-lounge-clothes longer (like now :)
I don't always do "full make up"
I sit and gaze and contemplate more, and process life more, and philosophize more, and think about the what if this, what if that, a lot more now.

I also have some regrets of things I've previously put off... as now I don't have the physical energy to do them. Oh well, maybe I will have more energy again one day... thank goodness my horses are middle-age and seniors now, and so is Jim!!! ahahaaa :) We're all moving a bit slower now!

Some people don't like my reference to a "Bucket List", but I think it's kinda funny. And I am all about funny! Lists and goals are healthy and forward thinking! I really am making a list... and it's not the list most of you would think of when thinking about an "accomplish before you're gone list". Mine is comprised of simple things. Simple pleasures, simple goals, simple activities, simple events, simple fun, living life today. I don't need chaos, complications, challenges or being featured on the 6:00 o'clock news.
Seriously, NO MORE CHALLENGES for sure!!
Hello Myeloma... did you hear me... I said NO MORE CHALLENGES!!!

Ok, on to the (slow motion) birthday celebration!!!!!!!!!!!!!!!!!

I wonder how many more I have?

Calm down friends, I am not freaking out! It's an interesting thought to ponder! :)

Sing along now...

 

And did I mention... I CHOSE to NOT begin all the meds until AFTER 11/22 !  I just wanted one more day of semi pretend normalcy... but ha! Dex you are already making me crazy right now!

Cheers to Revlimid and friends tomorrow for breakfast, lunch and dinner :)

Thank you for reading and caring and posting heart-warming, funny and supportive comments xoxo

_____________________________________________________

Here's a simplified, but great explanation of MM:

What is multiple myeloma?

Multiple myeloma is a cancer of the blood. It affects the part of your bone called bone marrow. Your blood is produced in your bone marrow, which is made up of many different types of cells, including red blood cells, white blood cells, platelets, and plasma cells.
A plasma cell is a type of white blood cell that normally produces antibodies to fight infections. Patients with multiple myeloma have cancerous plasma cells, also called myeloma cells, which replace and form tumors in bones and, occasionally, in various soft tissues of the body. Myeloma cells may also prevent the bone marrow from making enough red blood cells, white blood cells, and platelets.

How multiple myeloma may affect you

Myeloma cells multiply quickly and can build up in the bone marrow. When they do, they prevent bone marrow from making enough blood cells for the body to fight infection and other diseases. Prior to diagnosis, patients with multiple myeloma may experience a number of symptoms that lead them to seek medical attention. However, some patients may not have any symptoms or their symptoms may be vague. Multiple myeloma is often discovered as a result of laboratory testing or diagnostic imaging performed for other reasons, such as a routine blood test.
Common signs and symptoms of multiple myeloma include:

• Bone pain and broken bones
• Nausea and vomiting
• Weakness and tiredness
• Frequent infections
• Nervous system problems
• Anemia
• Hypercalcemia

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

new treatments for multiple myeloma have become available - See more at: http://www.onclive.com/publications/obtn/2013/October-2013/New-Approaches-Explored-in-Relapsed-Refractory-Multiple-Myeloma#sthash.LaE30QSj.dpuf