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

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!


Monday, September 1, 2014

Hello September... please be better than August!

Hi Everyone! Happy September!

Thank you for your concern when I only update once a month. I don't want this blog to bore you with too many insignificant updates, so I've focused on "less is more", posting my relevant monthly cancer stats along with some interesting personal life tidbits. Trust me :) I could post daily, weekly for sure, as so much happens in my life!

My sweet hubby Jim brought these to help me feel better!
Unfortunately and mysteriously to me, August was a month of merciless "chew and poo"! Ugh, "John" became my premier destination (sorry to those that the flinch at my too much body-biological detail reporting). I appreciate the personal details my Myeloma "blog-o-sphere" pals write in their blogs, as it is very helpful to read about other's diagnoses, treatments, medications, blood work statistics, reactions and side effects, life's challenges, etc, related to Myeloma.

Not sure why August was worse than some other months? I keep thinking about how I tolerated huge doses of Dexamethasone steroids during my initial treatment in early 2010. For 6 months I took 40mg Dex DAILY, 4 days on, 4 days off continuously!!! My dosage of Revlimid was the same too, 10mg daily, 21 days on, 7 days off. For sure I had all kinds of crazy side effects back then, but not the extreme "volcanic (lower) GI eruptions" I have now! My oncologists have confirmed that my entire physiology is changed, and my GI system is definitely different since my stem cell transplant.
As I reflect back and connect the dots, I realize how differently my treatment affects me now, since Myeloma came roaring back last year.

So with my new "chew and poo" lifestyle, I have become rather "home bound". Haven't been to my college office in weeks. I was very sad to miss my 32nd/29th "Fall Opening Day". Thank goodness I can still help students online. I think about how fortunate I am under these circumstances, as Jim has created such natural beauty in our backyard, and I am never without amusement and entertainment here. From all the animal residents and my human family's shenanigans, there is never a dull moment!  Click here for the "Triplets", baby sparrows update!

But however beautiful and entertaining my home is, I did suffer physiologically quite a lot this month. And basically every month from my meds, or perhaps it's side effects from IGA myeloma itself? Most of my current life is centered around trying to eat to get proper nutrients in my system to fight stupid cancer, and then wondering if it will "stick". Most of the time, no...
I like the combo versions the best! Mixed veggies and fruits
I eat what would be considered to most, really bland and boring. Baby food, Ensure, plain baked potatoes, Cream of Wheat, toast, and when I think I'm ok, I add in salad, veggies, fruits, protein, etc. I avoid acidic, spicy, onions, garlic, no greasy foods, nothing heavy, etc. There were days this month even bland saltine crackers didn't stick. But each day, regardless of the impending cramps and volcanic reactions, I would try to eat. There were days when I was in the bathroom every other hour. There were days I thought this would never end. There were days when I understood why some eventually decide the "treatment is worse than the disease". But I also know, what I am going through is not as rough as so many (or what I went through when hospitalized for a month for my stem cell transplant) ...so I carry on and hope for the best each day.

Here's my most recent statistics:

WBC's =  2.8 (4.0-11 scale) too low, thus very susceptible to everyone's cooties
ANC (Absolute Neutrophils Count) =  1.3 (1.8-7.7 x 1000/mcL) eekk! too low

M-Protein/M-Spike=   0.70 (normal = 0.0) too high
Beta Globulin Electrophoresis=  1.27 (0.65-1.10 scale) high
Gamma Globulin Electrophoresis=  0.35 (0.70-1.60 scale) low
Protein Electrophoresis= (always) Abnormal

IGA=  979  (70-400 scale) down a speck (I'm "high risk" IgA Myeloma)
IGG=  279  (700-1600 scale) too low
IGM=   17  (40-230 scale) low

And so I carry on. One day at a time, monthly blood work to monthly results. I've felt a bit better the last few days, as I'm on a little medication break. The war starts up again on Wednesday with Rev, and will slam me more after I take my Dex. But if these powerful chemicals are significantly punching Myeloma in the cellular gut, as I get kicked in the GI gut, I'll never quit!

Such a spectacular sunset, last day of August
Have a wonderful September, and thanks for reading and your on going support!

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


Some interesting reading:

I should have stayed on Revlimid maintenance!


Cancer Cases Among 9/11 Early Responders Continue to Grow

Remembering Arnold Goodman- The myeloma community has lost a courageous and inspiring soul

Remembering Stephen Kramer- Another valued voice of the myeloma community has been lost.

Goldman Sachs Former Lead Director Dies of Multiple Myeloma

(MMRF) Saddened by Loss of Dear Friend and Board Member Edward Jay Phillips

Who knew these famous people died from Myeloma!

Multiple myeloma is incurable


Monday, August 4, 2014

Surprise, Surprise! Rescues and Results

And just like that... July is gone and August is here! Still I pause and reminisce my July 2010 life-saving, life-altering events, and marvel at where I am 4 years later.
I am still here Myeloma!

Since my last blog posting and July milestones, I've met with my oncologist/hematologist, received my monthly results, discussed my current stats and treatment plan for this month and possibly next. I've taken note that I've completed 10 months of Revlimid and Dex since coming out of remission last year, dealt with several new varieties of side effects and weird physical stuff, but over-all, my quality of life is rather tolerable... considering I have "terminal, incurable" cancer, and I'm limited by how immune compromised I am.

But the ironies of my life never cease to humor and distract me from dwelling too long on my cancer status. I've always known my tendencies towards nurturing/healing/helping others, but my continual intersections with those that need me seem to never cease. So listen up Cancer... I have NO time for YOU!!!

This is what happened in my life this past week: 

 3 little sparrows needed me

 And my life is currently consumed with 
feeding these sweet babies every 30-40 minutes
Sun up to Moon rise!

So really Myeloma, listen up: I DON'T HAVE TIME FOR YOU!

I laugh at all the things that life throws my way. Perhaps I unintentionally intentionally attract these curious adventures? Yet what I do know, is that on a small scale I have been destined to find (or they find me!) a multitude of nature's most beautiful creatures that need my rescue and rehab! My mission here on earth Myeloma, is far from over, so just move on over and out of my life, and let me get on with saving other lives (human and animal).

I was QUITE SURPRISED to learn my Myeloma numbers were back UP this month, and my immune system continues to be borderline scary compromised! Into my "bubble" I go... ugh, I am so scared about getting sick, as there are so many germs out there, just lurking to attack those of us with weak immune systems!

So here's my results in #s :
WBC's really low:  2.5 (4.0-11 scale)
ANC (Absolute Neutrophils Count): 1.3 (1.8-7.7 x 1000/mcL) eekk!

M-Protein/M-Spike up again:  0.85 (normal = 0.0)
Beta Globulin Electrophoresis:  1.46 (0.65-1.10 scale)
Gamma Globulin Electrophoresis:   0.41 (0.70-1.60 scale)

IGA:  1110 (70-400 scale) up again from last month (I'm "high risk" IgA Myeloma)
IGG:   335 (700-1600 scale)
IGM:    17 (40-230 scale)

So what's all this mean? I'll continue on with Rev 10mg + Dex 20mg for August and see what happens. My oncologist and I agreed that if the numbers continue their upward climb, we'll try Rev 15mg for September, or add/try Velcade or another treatment option. My Drs are worried about my compromised immune system as there's a delicate dance here between treatment options and my ability to tolerate it. But I'll fight the fight, whatever that fight might be, as I have too much left here to do.

These past couple of months, several amazing people I know lost their battle to various cancers, including Myeloma, and others have been newly diagnosed. The tragic passing of loved ones is a wake up call to me to continue to view everyday as a Bucket List Day, take nothing for granted, find joy, happiness, humor, purpose and fulfillment each and every day! Yes, I worry about my "situation", but I don't dwell on it. I am cautiously optimistic that I'll get many more years, but I am also realistic...

So on the days I can, when I feel well, 
I enjoy all the little adventures that intersect my life!



















Jim and I took a little road trip the other day. Not too far, not too dramatic, but we spontaneously took off on a day we both felt ok. We've decided we'll do more of these little mini one-day vacays. 
I don't venture too far from home, too far from the bathroom or risk too much contact with germy people. "Less Is More" is just fine with us.
   

Last month, I was able to celebrate
Kristin and Ashley's life successes! 
Just love these girls!
Dex really slammed me that day, 
and it was quite a funny ride!

I had so many other things I was going to write about, but my little baby birdies have totally distracted me! So if you're curious about the birdie's story, here's my other blog :) 


Links worth clicking-

Treatment options discussion group
Myeloma Beacon is a fantastic Myeloma information source!

Who reads our blogs? Great post from Pat Killingworth
Thank you to all my readers everywhere, for caring about my myeloma journey!

Tom Brokaw's commentary on MM - An American Story - 07/23/14 
Spontaneously heard this on the radio last month!


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


Saturday, July 19, 2014

Stem Cell Transplant Reflections: 4 years ago today

July represents so many things to me now as I reflect back, 4 years post Autologous Stem Cell Transplant and mega doses of multiple types of chemos. I'm ALIVE 4 1/2 years since diagnosis of deadly Myeloma! I'm pretty amazed with, and proud of my successful medical journey.

My July anniversary brings so much to mind for me. I still marvel at what I have been through and endured, and all the treatments I have survived! It all still seems like an out of body experience, or like I was a participant someone else's movie. And it's still hard to fully comprehend I have incurable cancer...

Looking back, I have zero regrets about any of my treatment choices and I am forever grateful for all the amazing care I have received through Kaiser and City of Hope. Truly, my Doctors, Nurses and staff members saved my life! Even though Myeloma returned a year ago, and I have been back on chemo and steroids ever since, I am so much healthier than I was in 2009! Sure, I have daily physical challenges, but in the BIG picture of things, cancer doesn't stand a chance with me :)  I realize I will be on chemo and tackling some sort of treatment plan for the rest of my life, and I'm ok with that... as long as it's buying many more years of life for me!

Interesting to re-read my thoughts 4 years ago, July 19, 2010, midway through my hospitalization at City of Hope. I was struggling through the middle of my battle, both physically and psychologically. Being sick and isolated in a hospital room was indeed very challenging for me. I felt broken, and wondered if I would ever be "me" again:  http://juliesmyelomamoments.blogspot.com/2010/07/good-bye-juliehello-julie.html

But I recovered and successfully reached full Remission from all that I endured!
With the help of maintenance chemo for a year and a half post transplant, Remission lasted until Summer 2013.  I've been back on chemo since mid last year, and will be for the remainder of my life. But for what all this is, and what I have been saddled to battle, I am so grateful for the quality of life I still have!

So happy 4th Stem Cell Transplant Birthday Month to me! I'm still here Myeloma, and you're NOT winning!

July 2014 is VERY different than July 2010!!!

The other day I felt well enough to groom a few of my horses
Here's my beautiful once wild Mustang
"Sissy of the Siskiyous"
She's so beautiful, so sweet, so kind, 
and has never known anything but love and kindness

 And then....
Ugh! RedBear had several "Code Blue" Colics this month!
Thought we were going to lose him...

He's been diagnosed with ulcerative colic
and is now on Ulcer Gard which is a horse version
of what I take with my Dex steroids (Omeprazole)!
Can you believe that!

Fortunately he's doing much better 
and back to itching those itchy spots
with his "wifey" Sunny

So take that Myeloma!
I'm living life as fully as I can 
on the days I can!


Saturday, July 5, 2014

4 Year Stem Cell Transplant Birthday Reflections

And so the journey of my Stem Cell Transplant to Remission began July 5, 2010

July 2=  Day 1- Hospital admission
July 3=  Day 2- Day 1 of High-dose Melphalan IV chemo begins
July 4=  Day 3- Day 2 of High-dose Melphalan IV chemo continues
July 5=  Day 4- My stem cells arrive, are infused via my Hickman catheter, and my one month journey to near death, recovery and eventual remission begins in full force
  
July 3, 2010- Melphalan chemo arrives
My nurse had to wear special protective gear
as Melphalan is so "hazardous"
wow, I am so puffed up from 6 months of high-dose
Dexamethasone steroids! ugh!

 "Happy" (not!) 4th of July to me
Actually all my nurses were the kindest, sweetest
most caring professionals ever! 
They did an awesome job taking care of us and 
cheering us up, and on

 The BMT/SCT transplant nurse team was required to
accompany their patients to the "penthouse" area of the hospital
to monitor our meds and IVs

We had a semblance of normalcy on 4th of July
with a glimpse of fireworks from afar...
So surreal! I felt like a participant in a movie
 Here I am
All hooked up to all kinds of meds
So unreal to me then
and still now

 Staff and patients alike were "shocked" that I still had hair.
In the beginning days, I still styled my hair, and put a little make up on.
That ceased as the days marched forward, and I became sicker,
neutropenic, and my Hickman line became infected and
had to be removed via emergency bed-side surgery
I was "delirious" by then...
just about a week and a half after these pictures

 Still being the silly optimist that 4th of July
only day 2 of my hospitalization
Thumbs up... all will be ok I naively thought
(Little did I know the death defying crash to come...)

July 5, 2010-  My Stem Cells arrive!!!
 About 11:00am, July 5, 2010 my "stemmies arrive
all protected, frozen but thawing, ready to be infused. 
My stem cells arrived by a special nurse from the apheresis lab

 Next, another specialized nurse setting up my IVs
monitoring me hourly, making sure all goes well

Jim and Alissa show up, just after my stem cell transplant
They either hit traffic, or my stemmies arrived early...
But they came, we laughed, we cried, we tried to be "normal" 

And I even walked them to the elevator...
which was one of my last ventures out of my room 
for a month...

After all the complications and crazy side effects, I was able to leave the hospital about 28 days after I was admitted. I cried and sobbed when I was wheeled out of my room, out of the hospital and into fresh air. I couldn't believe I was finally "free". Free to go home and try to recover my life. Truly I was grateful beyond words for all the TLC I received by every staff member at COH and Kaiser... but being confined in that room for a month nearly did me in. Honestly, there were moments where I thought I would never be released... 

As I breathed in the outside air, and briefly soaked up the blazing summer sun, I realized the Julie that walked into that hospital, was not the same Julie that was walking out...
I knew that I had battled a battle I never chose to battle, and I knew I battled deadly complications. But I also knew that I was RELEASED from from that hospital ALIVE, and I had a chance to stay alive. I was given another chance at life and living, and 4 years later here I STILL am!

Yes, Myeloma came back mid 2013, but my initial high-dose chemo treatments, my Autologous Stem Cell Transplant, along with 1.5 years maintenance chemo post transplant, gave this cowgirl additional years! I continue to battle forward now that myeloma has returned, and will battle as long as I am strong enough to do so. I have so much to live for, and so much life left within me. Yes my future scares me. Yes additional chemo scares me, but I keep on keeping on... downing my pills and meds daily! But I live today, focus on today, smile and laugh any chance I get, and I look forward to all my tomorrows!

Happy 4th "New Immune System" Birthday to me today!

Here we are way back in the day
1983/4
riding in the local 4th of July parade
I decorated us and the horses alike with red, white, blue accents
and we won the parade trophy for "Matched Pairs" !


Wednesday, July 2, 2014

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


Friday, June 27, 2014

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!


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 Alissa 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 team, Dr Lee and Nurse Jalee at Kaiser PC, and Dr Spielberger and Dr Kogut at Sunset Kaiser/City of Hope hospital.
I began to formulate a new reality and accept my "New Normal".
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 remarkably 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!

And now... the 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

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