Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Friday, February 27, 2015

Monthly check up results... coming soon...

Hello end of February... you were a lousy month for me! Hoping March will be calmer. Ha! Probably not possible as what I've been experiencing will be what I will be experiencing forever... and it's only going to revv up... ugh!
So sick of being sick.

Today I will meet with my hematologist/oncologist to find out how Revlimid 15mg alternating with10mg is doing gobbling up those nasty myelomas....

Should I be brave and go full on 15mg?
Will find out today what my numbers are and what my Dr thinks.Crazy to live blood tests to blood tests.

Check back later, or tomorrow, or the next day or the next day, and I will post my news. I broke my "post on the 5's" plan, as I passed the 15th and 25th... but if you do the math for today, Feb 27... 7-2=5. Yep, I know... I'm ridiculous :))

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

Thursday, February 5, 2015

The New New New New New (unwanted) Normal

Hello February~

So I've been thinking (as I always do), specifically this time about how my life has changed in the 5 years I've had Myeloma. I've been thinking about how different I am 5 years later after diagnosis, what I can do and no longer do, and how I do what I do has changed... and frankly, I don't like it.

I am trying to come to terms with the incurable factor of Myeloma. I say the words, but it doesn't sink in... except when I've receive not so good news at my recent monthly oncology appointment. Then I get a slap-down, eye opening reality check that I really do have cancer, it's incurable and I have to keep increasing levels of chemo to stay alive. My blood test results below...

So humor me and forgive me for a bit of whining here. But my "disclaimer" first:
Of course, goes without saying, I am so very grateful for still being here, for all the fantastic medical care I have received over the past 5 years, grateful for all the loving, supportive, caring people in my life, and grateful for every day I wake up and can function (no matter the level of functionality or dysfunctionality lol). But dang it, I am (not so happily) coming to terms with my situation and limitations... and it's been 5 years!

I am frustrated that I am so limited everyday by how tired I am, how fatigued I am and how little I can do as a result of being so tired and fatigued.
I am frustrated that all the side effects from my medications (and this cancer) limit my ability to spontaneously go places, do things I used to do, play, work, and just live and laugh as I did.

I don't like that I don't feel as funny, light-hearted as I used just isn't as funny now as it used to be.
Life isn't as carefree and playful as I used to try and make my life. This may sound trite and superficial to you, but I've always been such a deep, thoughtful, analytical person, that I wanted the other side of my life to be light and breezy, sunny and silly, spontaneous and goofy. Cancer takes a lot of that feeling away, as a cancer diagnosis, treatment and the "new normal" isn't that fun or funny.

Life is just more serious now
Life is more painful
Life is more exhausting
Life is too full of too many "what ifs" and "whens"
Life for me is too much time in the bathroom or wondering what I can do before the "volcano" erupts
Life for me now is centered around which daily medications, when I can take them, what I can eat that won't cause GI distress
Life is "eating to live", but knowing "chew and poo" is looming

Life now is about looking at my life and wondering what the heck happened to me and why
Life now is wishing I could spontaneously saddle up and ride on a beautiful day
Life now is the awareness of too many changes, and too little time left
Life now being aware that my situation won't magically get better, my cancer won't disappear, or "be cured"
No, I am not being pessimistic, or being negative. I am an educated realist regarding the course of Myeloma

Life now is centered around taking meds and wondering how they will affect me, and I'd better be close to my bathroom or another... but that is also (by choice) a huge limitation to me. I (choose) to not be out and about just doing whatever, and then suddenly realizing I need to be in the bathroom NOW!!!!
See, my meds, IgA Myeloma, my Stem Cell Transplant, continuing chemo, etc, have so dramatically changed my GI system that I just can't spontaneously go places and do things as I once did.
Of course, as I write this, I just caught a glimpse of a horseback rider on the ridge, riding through the oak trees on this beautiful day. Why "can't" I do this? Because I'm too tired, too weak, too fatigued, too nauseous, too dizzy and can't risk a fall as I have fragile bones now, and what if my GI system screams NOW and I'm not close to a bathroom.. maybe I'll just buy one of these thrones since I spend so much time there!

I wonder what my color options are ;)
Ok, enough lamenting. Life is good for what it is. I still can clear my "system", not eat (so no chance of GI reactions), and go into work for a few hours, impact a few students' lives, see my colleagues that make me laugh and inspire me, and do a few things around home with my family and animals that make me happy!

My blood tells all:
WBC = 2.5 (normal 4.0 - 11)
ANC = 1.1 (normal 1.8 - 7.7)
Received a Neupogen shot at this last appointment

M-Protein = 1.25 (normal = 0.0 zero)
IgA = 1450 (normal = 70-400)

Yes, my Doctors want me to increase Revlimid
Yes, my Doctors want me to add in Velcade (IV or Sub-Q)

Yes, I should
No, I am scared of more side effects
Yes, I want quality of life, not more time in the bathroom, and additional Neuropathy

So I am alternating 4 days Revlimid 15mg, with 3 days Revlimid 10mg weekly for 3 weeks, to get my body ready to accept full 15mg next month (along with all the other meds I take: Acyclovir (anti-Shingles), Mepron(Atovaquone) pneumocystis pneumonia preventative, and my nemesis bi-polar Dexamethasone

February 5, 2015 is the 5th anniversary of my dear Mother's death 
from evil Alzheimer's

And so I carry on- 1 pill, 2 pills, 3 pills, 4 pills, 5 pills at a time.

5 horses...

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

Thursday, January 15, 2015

Hello Revlimid 10mg + 15mg for 2015

Well Happy New Year everyone! I just realized I haven't posted in 2015 yet!
2015 will be my year of symbolic 5's, so I apologize in advance for my 5-related silliness to come. I think I'll post on the 5's this year. So look for my updates on the 5th or 15th or 25th. Sorry... not sorry... numbers rule my life now, so I'll make them fun and symbolic!

So after spending most of December a sickie, I finally met with my oncologist the beginning of January, and we decided to move from Revlimid 10mg to 15mg. Might not sound like a big deal, but back in early 2010, during my initial myeloma treatments, Rev 15mg and I did not get along. As a matter of fact, I had a very scary allergic rash reaction. Within several days (maybe a week) of being on Rev 15mg, I began to get quite itchy and realized I had large patchy, raised bumps on my chest, back, arms and scalp. My oncologist had me immediately stop the 15mg and start chewing Benadryl like candy. She also increased Dexamethasone to 40mg- 4 days on, 4 days off! How I handled that, wow... I don't know. Actually I do recall how "yucky" I felt... but I was so stunned by my cancer diagnosis, that I just did what I had to do, and just got through it, to get to the goal: stem cell transplant and remission.

So when we discussed moving from 10mg to 15mg, I suggested starting gradually and alternating 10mg with 15mg. Yes, how novel and creative of me :) and you know what... so far so good! The prescription was processed on... you guessed it... 1/5/15 and I received it the next day. I'm in over 10 days now, and other than the USUAL side effects (too many to list) .. oh what the heck, here goes: tired, fatigued, buzzing, dizzzzzzzy, hot/cold, punched in the stomach feeling, bit of nausea, GI issues (corked up to volcanic lava), living in the bathroom on some days, breathless, bloated, restless sleep, sweating, should I go on... lol.. I'm doing ok!

Just look at all those pretty colors going after those nasty myeloma cells! (And that's just one of my pill containers!) Can't wait to see how 10 + 15 does. Yep! Cool idea I had! I have a SCT oncology appointment this coming Monday, and then my regular oncology appointment at the end of the month. I took blood tests about 5 days ago, but I don't think we'll see any dramatic changes yet. Perhaps when I update my tests closer to my end of the month appointment, maybe Rev 15 will have had the opportunity to annihilate more myeloma cells! 
Revv it up Rev!!!

Here's my stats from my last December appointment: 

WBCs = 2.7 (normal = 4 - 11) ouch! no wonder I feel yucky and got sick

IgA = 1070 (normal = 70 - 400) guess I really do have myeloma ;)
IgG =   264 (normal = 700 - 1600)
IgM =    17 (normal = 40 - 230)
ANC = 1.4 (normal = 1.8 - 7)
No wonder I am so immune compromised!

And dang it... M-Protein jumped up to 1.14 (sad face here)... and this level is what motivated us to commit me to moving to Rev 15mg-  (normal/remission = 0.0) 

My Thoughts Exactly!
So that's my 1/15/15 story. I still only have a few good days per week, and can only go into my office 2 days a week, as after my Dex steroid crash, along with Rev's lovely side effects, it's hello "Chew and Poo" lifestyle. The only way I can go anywhere, is to not eat before I leave the house (and take an Imodium pill), as I don't want any surprise "volcanic reactions". And it's so random too. I was feeling ok the other day, and after eating something as benign as scrambled eggs with spinach (at home) ... boom not long after... LAVA... lol

Hoping 2015 is off to a great beginning for all you, and I do really appreciate you reading and commenting on my posts. I'm thrilled to be here 5 years after diagnosis! I still feel so surreal about my diagnosis and still process all of this as if it's happening to someone else (except when I'm in the bathroom!)


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

Tuesday, December 30, 2014

5 Years ago TODAY... Boom! MM forever Changed my Life

Yep, 5 years ago TODAY, somewhere between 11:30-1:00, I was officially diagnosed with Myeloma. Multiple Myeloma. Multiple stupid Myeloma. But I'm still here, 5 years later!!!
So I've lived 6 myeloma December 30th days, surviving 5 years since diagnosis... weird math that is!

But it's the dash ( - ) between the years that matters and adds up to those important 5 years!
Ok, enough of my numerical silliness.

2014 is rolling over to 2015 in just hours and December hasn't been very kind to me. This month brought a lot of GI upset-unpredictability, tiredness, fatigue, headaches, neuropathy-buzzing, etc, so I didn't do much or leave the house much. I missed being able to enjoy fully moving into my new office and missed holiday festivities with my staff, friends, family, pets, nature, etc...

Then several days before Christmas, I totally bit the dust with a lousy sinus head cold fever thing. Still not fully well now, and sadly Jim and Scott caught my cooties this week. Cruel stupid germs. I see NO point in illness and sickness... (except isn't it nature's way of eliminating the weak...). I hate being sick and I hate being weak. But, thanks to what's left of my immune system, my biological-military battled the bugs and I am better now without hospitalization or Antibiotics! And that's a a big deal to me, as I was always proud of how healthy I used to be, how few bugs I caught, and how my body battled on it's own.

Just before I really bit the dust and my 101 fever tortured me, B.F.F. Kristin came over and she and Boots fell in love:

These are some of the cutest pictures I've ever captured!

Not long after that, I really went down hill fast and spent the last week feverish, all stuffed up, coughing, etc. We cancelled all our holiday festivities and parties. I didn't even get around to decorating the house this year, as I just didn't have the internal "helium" this December...
Did I mention, I haven't been on Revlimid for a week and a half+ now...  just happened to end my 21 day Rev cycle right as I got sick, and I felt so yucky, I haven't taken Dex for 2 weeks. Such a cheater I am!
But in the last day or so, I have felt better and even able to have a super fun moment with some of my fave student/office pals today. I look like the little ol bag lady lol with her bag (which was take-out for my sickies at home). Thanks everyone for coming out to celebrate, notate my 5 year anniversary!

 Talk about a Fun group!!!

And as the sun sets on 2014...
I continue to evaluate and reevaluate my situation, and really, the only wish for 2015 that I have, is to have the physical strength to do the things I want to do... which is really not much at all. I just want my pre-myeloma life back, so I can go where I want, do what I want, be there for others and not be consumed in physical symptoms, side effects, medicine regimens, and germs out to get me!

And just before I logged in to write this blog, I read an email from my awesome oncologist. I had written to her when I was sick, updating her with my situation and cancelling my appointment for last Friday. I have a new appointment for this coming Friday after New Years. She sent me my blood test results... and also said... "M-protein is up... thinking about going up on Revlimid... let's talk about this on Friday... please don't worry... we have other options..."

WBC = 2.7  (normal = 4 - 11)
ANC = 1.4   (normal = 1.8 - 7.7)
IGA = 1070  (normal = 70 - 400)
M-protein = 1.14 (no cancer = 0.0)

So Happy New Year 2015... hellooooo Revlimid 15mg.
Of course 15! It will be 2015
And of course continues my #5-theme!

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

Saturday, December 13, 2014

Numbers, Numbers, Numbers! My Life Represented in Numbers

Just couldn't resist the opportunity to post on 12-13-14!

Numbers. My life is consumed in Myeloma numbers. Numerical blood statistics. Numbers representing my health status and prognosis. Numbers determining how immune compromised I am. Numbers measuring whether I'm winning or Myeloma is...

Since diagnosis I've had to become ultra focused on my medical numbers, never wanting to be ignorant of my cancer status details. So I've learned more about what my myeloma numbers mean related to my body bio-chemistry, bio-physiology, then I ever thought my little brain could comprehend!
But I also see amazing (positive) numerical patterns EVERYWHERE in my life, unrelated to cancer. My mind and eyes gravitate to numbers now in a way I never did before. And I seem to have weird-amazing connected numerical patterns in my life, everywhere!

12-13-14 is a pretty remarkable number pattern, and I'm glad to have lived this historical 12-13-14! Originally, my plan was to post tomorrow, 12-14-14, as December 14 represents an all too important anniversary date: my First Hematology appointment. 12-14-09 began my Myeloma diagnosis journey, 5 years ago. #5 has become pretty symbolic in my life this year, and I look forward more important #5 dates coming up in (of course!) ... 2015!

That FIRST unreal, unnerving appointment, 12-14-09 is of course, permanently etched in my mind...  my life turned upside down like none other... well... except for my FIRST Bone Marrow Biopsy 12-18-09 and the BIGGEST of the BIG dates, 12-30-09, my official Myeloma diagnosis day.

But all is moving forward (thanks to continuing Rev and Dex treatments), and I am absolutely thrilled to still be here on this beautiful earth, living life the best I can, 5 years later at 55. These 5 years have been a gift, and I'm hoping for another 5 years.

***AND OF COURSE... WHEN I LOGGED OFF... MY BLOG PAGEVIEW STATS SAID... CAN YOU GUESS??? YES INDEED!!! ... 55,555 !!! Just can't make this stuff up... here's the "proof"!

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

Saturday, December 6, 2014

Racoons, Roids, Roller-coaster Results and my upcoming 5 Year Anniversay

Hello December, month of so many initial diagnosis anniversaries.

Blah, blah, cancer.... blah, blah, blah you have cancer... blah, blah, blah it's called Myeloma...Mye-who? huh? blah, blah, blah, blood plasma cancer... high risk My-e-loma... MY what the .... ???

FIVE years later, I still: 

Yee-haw! Bring on another 5 please!
Five year survival is a BIG DEAL
in Myeloma years!

So my most recent stats reveal I continue on an up down up down up down Revlimid roller-coaster. But you know what... I'll take it! One month my stats are UP, the next month they're DOWN:

October IgA was 1200
November IgA is 1180 (normal range is 70-400)
Not really statistically significant, but at least it's down .20 rather than UP .20 !

October M-Protein was .94
November M-Protein is .92  (zero) = cancer-free and/or remission
Again, not really statistically significant, but better .2 down. My oncologist and I talked again about moving to 15mg Revlimid... and I said, how about AFTER the holidays! And she said, "no problem". Love her!

Other blood levels and WBCs abnormal- I'm still immune compromised and scared of public cooties! And people still don't get it! "But Julie, you look so good! How can you have (incurable) cancer?" Thanks Myeloma, you're such an invisible confusing deadly cancer! Maybe I'll get a tattoo describing my situation... 
Speaking of tattoos, look at this amazingly special tribute to me from an incredibly special special special person in my life. Just took my breath away when she showed me this and told me she had it done on my birthday! wow! We are together forever, every "step of the way". She had me write out my nick-name and hearts months ago... but I had no idea this was why!!! Love you secret friend!

 And then is happened last Saturday!!! omg this lil guy is beyond cute!!! My doggies "treed" him overnight and he stayed there during the day. He/she is just an adolescent, and may not have developed the "tree smarts" yet, or the "how to trick dogs" technique yet. So we kept the dogs away from this area overnight, and he managed to get to a larger oak tree... and then it began raining... felt so bad for this "cuddly" bandit. Finally, the following night he was able to sneak away. Hopefully back to his family den. Yes I know their potential vicious, rabid, destructive nature, etc... BUT JUST LOOK AT THIS FACE!!! Just made my day being able to get these darling pictures!!!

So take that Myeloma. I receive the gift of life daily! So many many many special incredible people and animal experiences in my life daily! And I still make a difference on this earth! I don't get how Myeloma happened to me, but I AM SO VERY FORTUNATE TO STILL BE HERE!

I'm doing a little experiment with Dex this dose: I am splitting my 20mg weekly dose in half, taking 10mg today and 10mg tomorrow. I still got my Dex buzz today, and I'm up way too late again, but not the INTENSE SURGE I get when I do 20mg in one day. How the heck did I do 40mg, 4 days on, 4 days off for 6 months in 2010. I was one really sick puppy back then, so it really affected me differently. I'm still a sick puppy, but thanks to everyone and everything involved... not as sick as 2009/2010!

Thank you to my followers for reading and commenting on my silly musings. Means A Lot to me! And I just noticed that my PageViews have rolled over to 55,xxx!!! Do you even know how symbolic that is?! wow! My 55 BD, my 5 year Dx anniversary, and my 5 year SCT birthday coming up in July in 2015! wow! Time for a lottery ticket with lots of 5's !!!

Hoping your treatments are treating you well, life is bountiful and beautiful for you, 
and you live your daily "bucket list"!

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

Saturday, November 22, 2014

Happy Birthday to Me! HaHa Myeloma! I'm Still Here!

Dear Myeloma-

Wow! Hey, I made another birthday!!! hahahaa on you Myeloma cells, I'm still here. You may have completely changed my life, and the course of my life, and what I can do with my life, but I'm still here Myeloma! I've beat my own odds and medical statistics! And my 5 year Myeloma anniversary is coming up end of next month! Winning!!

I don't have any "big" birthday plans, as I don't feel very energetic, but that ok's with me as I still get up each day, function on the level I can, do what I can, and revel in just being alive!

Speaking of plans... I sometimes (really not too often) reflect on Who I would be now, What I would/could be doing/accomplishing at this time in my life, if it weren't for YOU myeloma. But, WHATEVER Myeloma, I'm not Wasting any time on What was, What could be, What might have been... I'm living IN today, FOR today, as much as I can.

Ironically, my last Revlimid pill of this current 21 day cycle is today. The timing is funny to me. And, just to ensure I will feel ok on my birthday, I saved YOU Dexamethesone, my bi-polar nemesis, for my birthday! Yay for "Roid-Rage" later today and 24hours of Fake-Feel-Good. I'll worry about your angry crash later lol!

So cheers to another year of survival, another year of successful battling, and another year of REVISED goals and dreams. Monday I will see my oncologist and receive my monthly status update. So until I know differently, I'll say it again Myeloma... I'm still here, and not planning to NOT be, any time soon!

This video makes me "Happy" and smile!

Thank you Pharrell Williams and "catmantoo"

This video makes me cry for so many different reasons....

Thank you Stacy Westfall for your breathtaking performance!

Wishing all of you unlimited birthdays!

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

Sunday, November 2, 2014

Incurable?! Terminal?! Whaaaatt?? But you look so.. good...

Well I've been delaying writing this post, as my news is not great. Not horrible, but not good. Myeloma is still winning as my M-Protein/M-Spike is up again and so is my IgA, etc. (Stats later)

 I hate you Myeloma, 
but this depiction strikes me as rather cute

And dang it! My immune system (White Blood Count and ANC, etc) is down again. Scary low. My oncologist spoke of Neupogen shots if my Whites/ANC continue to plummet, and especially if we advance to 15mg Revlimid.

How do all my myeloma cancer pals travel as they do and make contact with the public like they do? Some have said there's not a minute to waste, so they go wherever they want, and deal with the consequences afterwards. I read blogs about myeloma people's travels and just cringe at where they go (nationally and internationally) and then read they are later hospitalized for flu, pneumonia, viruses, etc. I am happy to report that my isolationist, bubblized lifestyle is working... and (knock on wood), I haven't been really sick-sick (virus or bacterial type) for a while! I'm also happy to report that I haven't seen the inside of a hospital since my Auto-SCT process! So I must be doing something right :)  I know I am missing out, and limiting my already limited life as a result of not traveling, but then again... I just don't have the energy or stamina to do the things I would most want to do...

One day... I will do this again!
True enough, I hardly go anywhere... I don't shake hands at all. I don't hug much. Actually, I don't make much physical contact with anyone really (unless I spray them down with bleach and alcohol first! j/k!). I socialize at a distance (on the few days I leave the house) and give only "air hugs". I still actually make it into my office several days a week. Everyone generally, is really respectful of my situation... except for those that don't understand my cancer type (it's invisible to the outsider). Those that are just meeting me for the first time think I'm kidding, laugh and make a joke or two, and still try to shake hands or hug me. And then there are those that think I am just being crazy OCD clean.

Case in point the last few months. I've had a variety of weddings to attend, family gatherings, non-profit events, a VW car show, special social events at my college, etc. When the topic comes up, which invariably it ALWAYS does as I do NOT shake hands, hug, kiss, get close, etc, people laugh and say, "oh Julie, don't be so "frikn" paranoid". You look so good! How can you have cancer? Your energy level is so amazing. You do so many things. Just look at your hair. You look so good" blah blah blah!!! Well thank you for your sweet compliments everyone ... but I really am a sickie.  I just dust off my cowgirl boots, pump myself up mentally, smile a lot AND PLAN ALL MY SOCIAL EVENTS AROUND POWERFUL STEROIDS CALLED DEXAMETHASONE!!! And I DON'T EAT before I go anywhere... just in case...

Hello people! If only you saw me when I get up... without a make-up, with un-glued, un-fluffed hair, with dark circles under my eyes (lol just ask Jim). And just imagine if you really knew all the time I spend in the BATHROOM! Not to mention all my daily symptoms and medication side-effects. Then you would understand I really do have cancer. Perhaps "invisible to you, but all too "visible" to me. And by the way, I am not exaggerating: Myeloma really is incurable, and our clocks really are ticking rather fast, and the word "terminal" is relevant. I say these words over and over and over to make sure I am fully in touch with my situation, impressing the point to myself that I must "get my show on the road"... now!!! Did you know... I have already out-lived my statistics...

Been there, done that, a very long time ago... want to do this again!
So in light of all of this... (and I said to myself I wasn't going to be so wordy on my posts anymore, as I don't know who's reading, who cares, or if I am too boring, too deep, too blunt, too repetitive, too philosophical, not interesting to read anymore, or just too dang wordy)... I was just going to post some beautiful pictures (to me, that is) that represent (some, not all) places, ideas, dreams, goals I would like to see, do, accomplish before I die. There, I said it! Before I die! Tick, tick, tick, tick tock!!!

I've always dreamed of having pasture land!
Can you just imagine riding/driving down this road
Snow, sun, pasture, horses, fresh air... limitless views
And I always wanted a Red Barn!
Cute, small, in/out access and I just love white fencing like this

I don't know when, how or where, but I just want to swim in beautiful, crystal clear waters!
For those of you that swim in pools or oceans, travel to local or exotic beaches and take for granted doing so... I can't recall the last time I dove into a pool, or fully immersed myself in the ocean.

This pic reminds me of when I was stung by a "Man o War" on a Maui beach! 
Very-pre-myeloma days. Maybe that "caused" Myeloma?!

Maybe one day I will post a pic of me in one of those chairs...

Happy Trails everyone! Hello November!

I lost an incredibly beautiful, vibrant, myeloma-sister a week ago. We were diagnosed just days apart and had very similar myeloma treatments. My head is stunned, my heart broken for her and her family, and I am just so devastated to hear of her loss and myeloma's affect on her...
I will link her blog here when her family let's me know it's ok, after they post her final blog entry...
I have lost more than 6 myeloma peers since my Dec 30, 2009 diagnosis. We were all diagnosed around the same time, and have had most of the same treatments... 

And finally, my recent Stats:

IgA = 1200 (officially 3x the high end of normal) 70-400 scale

M-Protein, M-Spike = .94 (NO cancer = 0 zero)

ANC = 1.2 scary!  (1.8 to 7.7 scale) Cooties stay away!!!

WBC = 2.6  scary low immune system (4 - 11 scale)- Hazmat suit time!

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

Saturday, October 4, 2014

It's Fall! Leaves are Falling! Pumpkins are coming! But My Numbers are Not Falling...

Hello October!
The nights now have a crisp chill in the air, even though we're still roasting during the day (and that's not roasting marshmallows)! I love the dramatic Fall colors as nature changes the leaves on trees and foliage everywhere.The horses are growing their winter coats already! And everyone is thinking and drinking Pumpkin!

My current life is such a roller-coaster in so many ways-
I have good days, and not so good days.
I have days I can eat, and days where... well you know by now... days where it's me and "John" hanging out together way too much!
I have days where I think I can go into work, then my side-effects sabotage me.
I have days where my aches, tingling, buzzing and neuropathy truly surprises me.
I have days where my GI symptoms just won't subside.
I have days where I feel I've been punched in the gut.
I have days when I schedule too much (which would be next to nothing in a "normal" person's life), where I am just so tired and exhausted.
I have days when I don't think I can make it from my office up the hill to my car. 
Sadly, I have too many days where I actually can't recall what it feels like to be "normal". I sure don't like this sickly cancerous "new normal" at all.

And then... I have days where a breeze catches my hair in a certain way (yes I have decided to grow it out), or the sun or moon shines in a particular way, or my animals do something remarkable, or I taste something delightful (no metal mouth!), or I drive my lil Bug with all the windows rolled down, or I have a really meaningful conversation with someone, or I do something that really impacts someone's life, or something's really gut-splitting funny and I get to laugh...a lot.
Those are the moments when I remember what "normal" is.

Thanks for posting this Kelly, so I could steal it!

And so, true to theme, my Myeloma life is currently a numerical roller-coaster. Those dang Myeloma numbers were up again this last blood test. But of course they are... those silly little cancer cells just want to remind me of my back-in-treatment-for-a-year-now anniversary. But actually, I really haven't ever been fully out of treatment... just a little chemo break for part of 2012/2013. It's coming up on my 5 year diagnosis anniversary. So we took a little drive, just because... just because we still can, and we are still here! So there, take that, stinkin myeloma!

Here's my recent stats:
WBC's =  3.3 (4.0-11 scale) low, thus very susceptible to everyone's cooties
ANC (Absolute Neutrophils Count) =  1.3 (1.8-7.7 x 1000/mcL) = low!
M-Protein/M-Spike=   0.82 (normal = 0.0) higher = (bad)
Beta Globulin Electrophoresis=  1.47 (0.65-1.10 scale) higher = (bad)
Gamma Globulin Electrophoresis=  0.42 (0.70-1.60 scale) lower = (bad)
Protein Electrophoresis= (always) Abnormal

IGA= 1140  (70-400 scale) up almost 3x normal (I'm "high risk" IgA Myeloma)
IGG=  287  (700-1600 scale) too low
IGM= < 17  (40-230 scale) too low

So like a good patient, I took my Dex steroids today, started 10mg Revlimid again for 21 days, popped a baby Aspirin, Acyclovir (shingles preventative), Vitamin B12, D3 and will start Mepron again asap (as that also contributes to the "volcanic" events). I'll use Omeprazole, Imodium, Lomotil, etc, as necessary. My head is headachy, my skin is buzzing, my right lower leg is swollen, I am forever thirsty, and when I walked in the half moon moonshine a bit tonight, I "dribble" from the Dex... hahahaaa so funny!

But life is good in the BIG picture of things, and I am STILL here. From what I read and hear... I've outlived my probability and statistics! Whooo hoooo!!
And to celebrate my life and passion for rescuing the 4 baby sparrows, my dear creative artist friend Kathy made me this stunningly beautiful painting! Thank you for your friendship, love, support, laughs, deep conversations and amazing artistic creativity Kathy! Looove you and my Birdie Art so much!!!

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

Friday, September 19, 2014

Revlimid! My ah-ha moment!

Dear Revlimid-
Thank you, Thank you for saving my life by pummeling Myeloma.
But at the same time Revlimid, you are ruining what's left of my ruined life!
I am a house-bound, bathroom prisoner more than ever now...
I've discovered it's YOU Revlimid!
YOU are the cause of my "chew and poo" lifestyle!

I've tried to eliminate (ha! no-pun/pun intended!) so much from my daily ingestion to figure out why I have spontaneous volcanic GI issues.
I try to eat well, then it alllllllll goes through me.
I'll even "starve" myself, just so I can leave the house.
I eat light, healthy, bland, and that too goes through me.
I think I'm fine, then suddenly...cramps! and I am not fine at all.
If anyone is looking for me in the house, they know where to find me... and it's not out riding a horse!
Whatever I do regarding eating, I've finally discovered it's YOU my life saving Revlimid- you are the cause of awful, unpredictable, volcanic GI distress!
You are my nemesis, yet my best friend and ally. Ugh!

Recently, as an experiment, I stopped taking Dexamethasone, Acylovir, Mepron, etc, thinking it was one of those meds aggravating my GI system... as I really didn't think it was you Revlimid that was causing my intestinal distress. But nothing changed! The crazy volcanic reactions continued...

Seriously, I've read online about everything Myeloma since 12/30/2009... and just now stumbled upon this incredibly relevant ah-ha moment video: #AskDrDurie: How can Revlimid’s diarrhea side effect be handled?
How had I missed this?! Dang you life-saving Revlimid! It's YOU! Now I know who's the "chew and poo" culprit!

I've heard other MM patients talk about their diarrhea issues, but it just didn't sink in that it was you Revlimid causing me all this distress. I did fine on 10mg of Rev during initial treatment early 2010. But thinking back... that must have been because I was so corked up from 40mg of (4-days on) Dex!!! I had quite a time with GI reactions when hospitalized at City of Hope, but that was from all the high-dose Melphalan and the entire stem cell transplant process and neutropenic crash. (And I think they had me on Lomotil.)

So it must be that over time, my GI has begun to rebell. I "forget" that I have been back in treatment for a year.. and my GI system is so much different now and dang it, so much more sensitive! Not to mention, it's over 4 1/2 years I've been in (almost) continuous treatment!

And so, I must accept that "chew and poo" is here to stay and start trying out everyone's anti-diarrhea recommendations and medications. I've been so reluctant to add another chemical or prescription to my system, but I give up... it's a quality of life issue now!
Hello Imodium, Tums, Pepto Bismal, Kaopectate, and RX strength Lomotil.
Fellow MM-er's, please let me know what works best for you and possible side effects of each! I am not very brave at trying new meds anymore!

So now I know it's YOU Revlimid that causes unpredictable, volcanic diarrhea! But I still love you Revlimid since you brought me back from death's doorstep in 2010 and you continue to stomp and chomp myeloma outta my cancerous system!

Watch this video! Thank you Dr Durie and the IMF for this huge ah-ha insight for me!

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

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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint!) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!!
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan
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
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 the Heck is Multiple Myeloma?!

Multiple myeloma is a cancer of your plasma cells, a type of white blood cell present in your bone marrow. Plasma cells normally make proteins called antibodies to help you fight infections.
In multiple myeloma, a group of abnormal plasma cells (myeloma cells) multiplies, raising the number of plasma cells to a higher than normal level. Since these cells normally make proteins, the level of abnormal proteins in your blood also may go up. Health problems caused by multiple myeloma can affect your bones, immune system, kidneys and red blood cell count. Although the exact cause isn't known, doctors do know that multiple myeloma begins with one abnormal plasma cell in your bone marrow — the soft, blood-producing tissue that fills in the center of most of your bones. This abnormal cell then starts to multiply. Because abnormal cells don't mature and then die as normal cells do, they accumulate, eventually overwhelming the production of healthy cells. In healthy bone marrow, less than 5 percent of the cells are plasma cells. But in people with multiple myeloma, more than 10 percent of the cells may be plasma cells. Because myeloma cells may circulate in low numbers in your blood, they can populate bone marrow in other parts of your body, even far from where they began. That's why the disease is called multiple myeloma. Uncontrolled plasma cell growth can damage bones and surrounding tissue. It can also interfere with your immune system's ability to fight infections by inhibiting your body's production of normal antibodies. Researchers are studying the DNA of plasma cells to try to understand what changes occur that cause these cells to become cancer cells. Though they haven't yet discovered the cause of these changes, they have found that almost all people with multiple myeloma have genetic abnormalities in their plasma cells that probably contributed to the cancer. For example, many myeloma cells are missing all or part of one chromosome — chromosome 13. Cells with a missing or defective chromosome 13 tend to be more aggressive and harder to treat than are cells with a normal chromosome 13. ~ From the Mayo Clinic