Sick of being Sick and other recent Medical tales

Hello Everyone that might still be reading my Myeloma blog-

Since my last happy posting, I kinda bit the dust... and not in the way I would like... like back in the day when it was "fun" to bite the dust from falling off or being bucked off a horse!

Yes, recently I bit a different kind of dust, as in, unwillingly being relegated to the couch and the bathroom for the last couple of weeks! ...
How can I put this delicately, sparing you the not so delightful biological experiences I've had recently...
First off, after recovering from a head cold middle of April, thanks to my darling daughter, I was well for a whole week! Yiippeee... then my darling son came down with the lovely intestinal bug!!! So being the good mother I am (even tho they are in their mid-20's) I glove up, mask up, and take care of them!!!

But I thought... even tho several of my blood levels are still sub-normal... I confidently thought I would be just fine, and not come down with his awful bug... and boy did Scott get it bad! Off from work almost a week. We talked about this "weird" undefinable stomach pain he had... like none other!
Not long after Scott began to feel better... I began feeling this same undefinable stomach pain... as a matter of fact, the picture of me with the doggies from the posting below this, is right when I was coming down with this awful bug... so a week was spent you know where, doing you know what... enough said... lol

BUT!!! I recovered just in time to.... drum roll... prep for my first ever.... COLONOSCOPY!!! So yes, it seems like I've lived in my bathroom for weeks now... hahahhaa
Yes, most of May has been a body janitorial experience I'm not anxious to repeat anytime soon!!!

Here I am "recovering" from The Procedure!

As a result of this non-elected cleansing (thank you my son) and then the required medical "cleansing experience"... I do have some been-there, done-that experiential tips for all of you reading this, dreading your upcoming experience of this ever so important internal medical viewing event!!!

First off, I tortured and scared myself the night before I was supposed to begin DRINKING the evil gallon of polyethylene glycol, aka GaviLyte-C... by reading online other people's experiences! Dumb! as I was ready to beg-out the next morning and call my Dr and cancel out!!!

But my head overruled my emotions, and I began drinking the cocktail of internal cleansing...

Honestly, the taste wasn't as horrible as I heard and read. But perhaps, after all the treatments I've been thru this past year... many things are now "cake".
So here's my recommendations for a less traumatizing colonoscopy prep:
Eat light and smooth days before
Opt for an afternoon appointment, so you don't "cleanse" all night
Don't eat the morning of the day you begin the prep; clear fluids and broth only
Don't guzzle the laxative prep every 30 minutes as recommended
Drink it slowly so it doesn't make you sick
Drink a glass every hour-ish
Don't follow it with water or sports drink if you feel full
Go with your intuition- if you feel full, don't drink
I used a straw to sip it in the beginning, then actually began to be ok drinking more at a time
Bring your phone, computer, magazines, books, etc into your favorite bathroom with you, as you'll be spending a lot of time there LOL

I actually was able to down 3/4 of the gallon over about 5-6 hours and was actually able to get to bed and sleep ok thru the night (no cleansing that is, during the night thankfully!)
I then drank one glass of prep 5 hours before my afternoon appt and didn't have any liquid 4 hours before the appt

No doubt I was really "drained" and "pooped" out... pun intended haha, and physically exhausted by the time I arrived for my appt, and very ready to have it over and done with!
Interesting to me was my emotional reaction when I was admitted and realized it was going to be a hospital-like, in-patient experience. That caught me off guard as it brought back a lot of feelings, memories and emotions from my July 2010 stem cell transplant hospitalization...

So after all the anticipation, all the prep, all the worrying that they might find "something" I was told I did a fantastic job at cleansing and they DIDN'T FIND ANYTHING! As my nurse assured me... my Dr's quote was :  "NOTHING MEANS NOTHING" :)

Finally, I will add that as I awoke from the "put your lights out" meds, I had a wonderful feeling of peace, calm and relaxation... hhmmmm what were those drugs anyway... I think I want some again!!!!!

5 + 5 = 10

Hello May 5
5 / 5 / 11

Happy 10 months Post Stem Cell Transplant to me on this 5 / 5

So you think I should play the next lottery with a bunch of 5's

Or perhaps visit Vegas and play some 5's


Not to mention... .5 Revlimid Chemo is
Saving My Life... one pill at a time!

Ha! Enough said on this one today,
as I think the numbers speak for themselves!

Signing off with 10 high 5's

Story to come about Miss happy Hanna (on my lap)

rescued from death row!!

Happy 12th Birthday to you Max, on this 5 / 5 / 11
RIP Maxie and thank you for sending Hanna to us!

Celebrating Thousands of SCTs & BMTs

PRESS RELEASE FROM THE CITY OF HOPE WEBSITE:

Friday, April 29, 2011
"Special Event 9 a.m. – 3 p.m.

"35th Annual Celebration of Life Bone Marrow/Stem Cell Transplant Reunion (Invitation Only)
Thousands of bone marrow/stem cell transplant patients will celebrate their victory over cancer at City of Hope’s 35th annual “Celebration of Life” Bone Marrow Stem Cell Transplant (BMT - SCT) Reunion.
One of the largest events of its kind in the country, the reunion will feature City of Hope cancer survivors meeting their lifesaving donors for the first time.
Celebrating City of Hope's 10,000th BMT/SCT !

"Special Dodger Guest: Andre Ethier

"LOCATION: City of Hope, Rose Garden & Pioneer Park, 1500 E. Duarte Road, Duarte, CA 91010

"Each year, City of Hope invites bone marrow, stem cell transplant recipients and their families to attend the "Celebration of Life" event. This return to City of Hope is a joyous day for all in attendance, as they celebrate the obstacles they have overcome in fighting cancer.
Months or years after their transplants, patients and their City of Hope health-care team members have the opportunity once again to share the success of their treatment.
Annually, two patients and the marrow donors who saved their lives are introduced for the first time. Needless to say, tears of joy are a frequent sight on this emotional day!"

Best Dr ever, Dr Kogut and Best Nurse Practitioner ever, Tina 

Best Dr ever, Dr Spielberger

Visiting City of Hope 5th Floor

My July 2010 home that saved my life!

  That's where I was, up there on floor 5 and 6

for a whole month...

Hundreds, maybe thousands of Survivors

Celebrating our Stem Cell and Bone Marrow Transplants

Celebrating life, health, our healers, care-givers

and our hope for cancer-free futures...

Thank you City of Hope staff members 

and my fabulous Kaiser Doctors and Nurses

One of these days I will fully "connect" with the term "survivor" and that I Had/Have CANCER ... I think I am still in the " H U H??? " stage, as walking around the event yesterday was quite overwhelming. Seeing so many many people who have survived cancer for just months like me, and those who had transplant "birthdays" from years and years ago, was just mind boggling to me! I met so many amazing people!

It was like a family reunion, where we all had this BIG THING in common... random people would congratulate me for my 9 months post SCT and I would look at their badge and see their years of remission or sadly in many cases, years of struggling with several cancers, treatments and in and out of remissions.

I am slowly beginning to realize I am forever part of a new "family" I did not choose or want to be a part of... and no doubt, the monster that brought us all together is truly horrible, yet the spirit of all "us" survivors is beyond remarkable and breath-taking!

Wednesday the 13th feels like FRIDAY the 13th

Well my optomistic bubble has burst today...
My eternal theme of "the glass is always half full vs half empty" is feeling empty today...

I've been working so hard eating right, hydrating all the time, and taking care of my cancerous bod...
But that's not enough to keep the evil germs away, as I guess I just don't have a strong enough immune system to battle off the invaders...

I felt "off" late, late Monday night... as I don't sleep well, or really much at all anymore
I then felt more "off" yesterday while at work, and sure enough, developed a nasty sore throat during the night, and I've been drinking hot tea and blowing my nose ever since...
THANK YOU DARLING DAUGHTER ALISSA FOR SHARING THE GERM LOVE!!!

So be careful what you wish for ... as I've been so tired and overwhelmed lately, that I've been silently wishing for magical down-time to just catch up... well that's what I've got now, as I don't feel like going anywhere or doing much at all and I know it's all downhill from here with a bug like this... whaaanh, whaaanh, whine, whine...

And adding to my "woe is me" status right now are these memorial tribute articles about two well known people who have recently died from Multiple Myeloma... and note the significance of THEIR dates of death to MY life... hhhmmm what's the message here????

MMRF SADDENED BY EDDIE PHILLIPS' PASSING
The Multiple Myeloma Research Foundation (MMRF) mourns the loss of Board Member Edward (“Eddie”) Jay Phillips, who, on April 8, 2011 died of multiple myeloma, an incurable blood cancer. Phillips, son of "Dear Abby" and Creator of Belvedere Vodka, had battled multiple myeloma for nine years.
(He died on my daughter Alissa's birthday..)

MMRF MOURNS LOSS OF GERALDINE FERRARO
We are deeply saddened by the loss of MMRF Honorary Board Member and dear friend, Geraldine Ferraro, who passed away on March 26, 2011, following a courageous battle with multiple myeloma.
(She died a day after my son Scott's birthday, and has the same birth year as hubby Jim...)

And to further jab the "pin in my optimism balloon", read this from the MMRF's website. I had never read this statement before, with the lovely life expectancy statistics:

About Multiple Myeloma
Multiple myeloma is an incurable blood cancer.
The five-year relative survival rate for multiple myeloma is approximately 38 percent, one of the lowest of all cancers. In 2010, more than 20,000 adults in the United States will be diagnosed with multiple myeloma and nearly 11,000 people are predicted to die from the disease.

Sooooooooooo...... with Edward's 9 years survival post MM diagnosis and Geraldine's 12 years survival post MM diagnosis, along with the 5 year statistics mentioned above...  does this mean I should take my head out of the longevity-sand and start accepting that I will not live as long as my parents...

Happy Wednesday the 13th...
Cheers to my 9 month old immune system and it's losing battle with the bugs!

O, I forgot to add....... as I was looking for a cute kleenex box picture to add above, I found a cute kitty on a tissue box, and clicked to save and add........ AND IT WAS A FRIKN VIRUS!!!!
Almost crashed my computer!!! Yikes, this is just not my day... whaannnhhh, whhaannhh!!!

23 years before Myeloma ~ Celebrating my Daughter!

On this day, April 8th, 23 years ago, my beautiful, amazing, smart, strong-willed, fun daughter Alissa was born!

As I mentioned in my previous birthday blog about son Scott, Jim and I were not planning to have kids... we were raising horses and other animals... then nature surprised us... and wow! how lucky are we!!! How I wound up being so blessed with a son and daughter I will never know... but I do know that my life would be completely unimportant, without them..

As all us (loving) parents know, nothing in the world affects as much as our children do... no matter how old they get, they will always be our babies! I know how I mothered and protected my animals... but wow, I sure learned fast what that fierce "mother lioness instinct" was! I remember how instantaneously my thinking changed and rearranged regarding my life choices, priorities, career plans, etc...  ah... the things I did, the mountains I moved, to be there for them, and be available to them always...

I still have those beads

and they have Alissa's BITE marks on them!

Yippee, part-time cowgirl me, got me a lil pony-pal gal

The years have flown by at lightening speed and I cannot believe we are where we are, celebrating the birthdays we are! I would go back in time to have those 25/23 years again... to slow down a bit, to enjoy each moment a little more thoroughly and unhurriedly. I would live these years all over again, just because! Just because they were so amazing, so wonderful and now... so very gone...

My beautiful, smart, successful, healthy children, now ADULTS are fully immersed in their own lives, with their own plans, dreams and goals, and Jim and I are on the perimeter... no doubt still very involved... but appropriately, on the perimeter of their lives... we guide and discuss; observe and suggest... but ultimately, it is they who now decide those landmark, milestone personal choices that young adults must...

I used to naively think I would live forever and be the crazy ol grandma walking the grandkids and ponies down the road... welll thank you Myeloma... you sure (POSSIBLY, most probably!) changed those plans. Now I don't know if I'll be there for my kid's kids... thank you cancer for sabotaging my life...

But for now, I live in the moment, for the moment, and each moment is priceless and never again, as it is what it is, when it is...

HAPPY 23rd BIRTHDAY

TO THE BEST DAUGHTER A MOMMA COULD EVER HAVE!

My life would be empty and meaningless without you!
Love you forever and ever and always!

9 months post SCT ... with current MM Stats

Nine months ago today, I received my own Stem Cells back to re-energize, re-furbish, re-grow, re-generate and re-new my cancerous, chemo stripped system! Yippee, that was 9 months ago today!!!

And the numbers from my last blood tests reveal that the Lows are LOW and the Highs are HIGH and then there are plenty in the middle!!! And I'm still in Remission... but some tests....

But it's Spring Break for me... and it just happens to be an amazingly beautiful California day... before the next storm comes our way, end of this week... so I'm headed out to pet and brush my horsies.. so check back for my important MM numbers below...

Our favorite walk, so greeeeeeen now after the rains!

That's my escort blazing the trail! 

Postcard pretty at sunset!!!



AND FOR THE Recent and Relevant MM NUMBERS:

BETA-2-MICROGLOBULIN

4/4/2011

1.8

Standard Range =

0.8 - 2.2

mg/L

================================================

                                                         My result           Standard


KAPPA LIGHT CHAIN, FREE                            6            3 - 19 mg/L

LAMBDA LIGHT CHAIN, FREE, SER/PLAS          6            6 - 26 mg/L

KAPPA/LAMBDA, FREE RATIO                        1.0          0.3 - 1.7

================================================

IMMUNOGLOBULINS G A M :

My IGG = 670                Normal Range = 700 - 1600
My IGA =   32  Normal Range =  70 -  400  (was over 5000 at diagnosis!)
My IGM = <20                Normal Range =   40 -  230

PROTEIN ELECTROPHORESIS :
All within the NORMAL ranges :)

CBC Results =
All within the normal ranges, at the lower and higher extremes, but NORMAL......

EXCEPT MY WHITES... WHICH DIPPED TO 2.2 (Thank you Revlimid Chemo)
but of course it's 2.2...
That's my magic number... remember??!!
So perhaps 2.2 isn't so bad afterall... but then again... I don't plan to live in bubble with a mask and gloves! But you will see me anti-bacterializing everything and everyone around me!!! So beware... only come close if you're healthy, and please don't want to shake my hand or kiss me!!!

There was one other test which came out ABNORMAL... and they will be doing other testing on me and I'm not a happy camper about it :(

April Fools! It's all a Joke!

Happy April 1, 2011 !

I'm sooooo happy to report that I have just been informed that my Myeloma diagnosis was all wrong!

Wholly Cow! They've made a mistake and I've been notified that they were actually just messing with me!
My Myeloma diagnosis is not MY loma anymore! I'm able to give it back!

I was part of a secret controlled year long study to see what would happen, physiologically and psychologically, if they took a perfectly healthy mid-life gal and told her she had cancer and treated her as if she did, so they could analyze what would happen to someone who seemed to have it all!

I was specifically chosen because I have a wonderful family, great career, wonderful friends and colleagues, beautiful animals, and was in seemingly good health!
Additionally, I was specifically selected for this study, as they wanted to see how Goldilocks would handle a startling chemical make-over to become a Grey Poodle who became a Grey spikey Porcupine!

Well the data is in and I am thrilled to report that I'm done being a cancer-patient and done with my chemo-make over! Here's photo proof below that I am off livin' it up, drinking, partying, playing, riding horses again, and the next time you see me....... good bye " poodle platinum blonde" .... hellooooo sunny palomino blonde!

This is me finding out the crazy news!

Witnessing the news, Nurse Jan and my Dad Hal

Here I am with BFF's Lori and Nurse Jan

escorting me out of my hospital isolation!

I'm at a loss of words here!

Just look at my expression!

I'm so excited to be out

I brought a few of those red medical bio-hazard signs with me as souvenirs

My people here toasting to my good news!

Hubby Jim is nowhere to be found.... it's done him in!

Even random horses were galloping over to celebrate the good news!

HAPPY APRIL 1, 2011 everyone!

May April make you as foolish and full of frivolity as me :)

Hmmm... something tells me hubby Jim doesn't believe a word

I write or speak...

 

25 on the 25th! Celebrating My Son

Happy 25th Birthday Today to my "Mr Incredible" Son Scott :)

25 years ago today, was an amazing, monumental day for me and my hubby Jim...
Our handsome, smart son Scott was born at 1:58pm... ah.... such a story... but those that know us, know the tale, and those that don't... well... most of you are parents, and know that the day our children are born, is one of theeee most SPECIAL and life-altering moments in our lives!!! Especially since I was not PLANNING to have children, and was focused on building my career as a Counselor, and Jim and I were breeding and raising horses... not kids.... hahahahahhaaaaa such a story... and now 25 years later... I cannot imagine a life without my amazing and beautiful kids...

 Mommy and Me preschool class- 1990

2nd birthday, 1988, just before Alissa was born :)

So today, March 25, 2011 I am so blessed and grateful to be here, despite my cancer diagnosis Dec 2009. I am hoping for many many many more birthdays with my beautiful family...

Happy 25th birthday to you my Scotty-boy, and happy 25 years of lightening fast, spectacular motherhood to me :) Life would be meaningless without you in my life!

Scott, Julie, Jim 1987

(and Alissa's in the oven :)

My Mr Incredible today!

So Incredible!

We're such proud parents of you Scotty-boy!

Love you forever and ever always!

2.2 on 22

Yikes!!!!! My whites are falling, my whites are falling!
I know, many of you say not to worry, levels fluctuate daily, weekly, monthly...
But now my Drs are taking note... and talking changes... maybe...

I had been as high as 3.4 a few months ago... but I guess Revimid is doing it's job and then some... as my white count has progressively dipped each month since then, from the high of 3.4 to 2.9 then 2.9 to the new low of 2.2, revealed at my last check yesterday...

I feel ok... just so tired all the time... but that also has to do with my busy, busy and back to work lifestyle I keep telling myself, and not getting to bed earlier ...
So I will head for bed now... and add all my details to this post tomorrow or the next day or the next ... as I have all kinds of data this time... light chains, immunoglobulins, beta micro... blah blah blahs...

Hi from Mr RedBear :)

R I P Max ... 5-5-99 to 3-15-11

Our family is mourning the loss of our dear furry pal, Max ...
Maxie, our sweet little Chihuahua doggie, almost 12 years old, died from congestive heart failure last night, around 11:30pm

We knew Max wasn't doing well these past several months. We had been to the vet with him several times recently. He had over a pound of fluid drained out and was on several medications, but we didn't think we would lose him so quickly. He died in Jim's arms, not long after watching a movie with us...

Max was a spontaneous surprise for hubby Jim, right after Jim's cancer surgery in July 1999.
Not long after Jim was home from the hospital and just beginning to feel a bit better and develop an appetite, I left to run a few errands. I called Jim to see if he wanted me to bring him anything to eat and he mentioned that a Subway sandwich sounded good to him. I promised him I would stop on my way home and bring his favorite Sub.

But just before stopping for our sandwiches, I remembered I needed to stop at our local pet shop for worms for the turtles... well we all know what immediately confronts customers in the local pet shops... those cute, adorable puppies and kittens... and sure enough when I walked in, sitting all alone in a pen, was this tiny little fluffy butterscotch long-haired Chihuahua puppy. He looked like a large guinea pig!

The reason he caught my eye at all, involves me telling you a little of our past history... see, several years prior to Jim's cancer diagnosis and surgery, we hospiced Jim's sister during her end-of-life battle with lung, lymphoma and bone cancer. And when she came to live with us, she brought her best friend and companion Max Sr., a charcoal-beige Chihuahua. Sadly, not long after Aunt Scotti died, we came to find out that her Max had sinus cancer and his sinus cavity was almost entirely hollowed-out from the cancer...
We promised Aunt Scotti that we would of course care for her Max and do everything we could for him. Max Sr and Jim especially bonded, as he wasn't used to kids, commotion and all the craziness of our household at that time.

Well, sadly within a year, Max Sr began having full-body-jolting-seizures. Our vet explained he wasn't long for this world. We just couldn't bear to watch him suffer through these stroke-like seizures and labored, choking breathing, so we did the humane thing and had him euthanized. This really tore Jim up, as he had just lost his sister, and now her little doggie, his new buddy...

So several years later, when I saw this tiny replica of Max Sr., I just couldn't resist the impulse to buy him for Jim as a little couch companion during Jim's cancer recovery... I think I completely forgot to buy the worms for the turtles and bundled up this fuzz ball and headed home to surprise Jim. Alissa was on the couch reading (of course!) and didn't pay much attention to me until I motioned to her to peak at my little bundle hidden in my shirt. To my surprise, Jim was actually sitting up at the kitchen table... waiting for his Sub sandwich...
I placed the little bundle on the table and Jim, expecting a wrapped sandwich, nearly fell off the chair in shock when the little "sandwich" moved and whined!

And so went the story of Jim recovering from his surgery and cancer ordeal with the help the new adorable, sweet, loyal Max Jr.. (who was almost named Subway, or Suby or Prostate!)

Today my heart is so heavy with the loss of our Maxie, but I can smile at all the wonderful memories, good times, and daily connections this little doggie has with us. Scott reminisced he no longer has a breakfast buddy to share cereal crumbs with or be greeted by a vigoriously wagging tail, when we all come home. Alissa reminisced we won't have our inside guard doggie, snuggle buddy or movie buddy anymore... along with so many many memories...
Jim of course, can barely talk...

Thankfully Scott spontaneously took this picture

yesterday Max's last day

He just sat there soaking up the sun, looking happy...

Little did any of us know... this would be his last moment like this

We said our final goodbye to Maxie tonight, as we burried him in the backyard, in his bed, in a sunny place, near the horses and deep within the earth, where our other past canine and feline pals rest forever...



8 months Post SCT

So today, March 5, 2011 marks 8 months since my Stem Cell Transplant at City of Hope on July 5, 2010
Can't believe it's already been 8 months since that grueling month-long hospital stay and challenging recovery process...

Overall I'm feeling ppppretty good, but realizing I most likely will never have the same energizer-bunny energy I once had...
( lol age factored in too haha )
I am realizing my body will now always have weird aches and pains and numbness, along with crazy stiff joints and cramped muscles, that I never had before my SCT ... but ha! I don't make enough time to exercise regularly either... so go figure I'm so whimpy and achy now!!!

Today was such a beautiful sunny warm day to celebrate my Remission success I stopped all my ongoing indoor-never-caught-up-on-household and online activities, and went outside for a long walk.
When I returned, I petted my horsies and cleaned the arena...which really is great therapy for me!
Raking and forking poop into the wheelbarrow is actually great full body exercise !! I purposely leave the wheelbarrow outside the arena so I get extra walking back and forth, in addition to the "apple-picking"!
If I only had time to do that everyday... I'd be the Myeloma Ranch-woman of the year!
Luckily, hubby Jim, my ultimate "ranch manager", super pooper-scooper extraordinaire, is in such great shape for his old age because he gets this special exercise multiple times a day!

So as I mark this EIGHT MONTH SCT and Remission anniversary, I will leave you with an incredibly moving video of the amazing horsewoman Stacy Westfall, riding in tribute to her dad who died (from what, I couldn't find) just weeks before this spectacular bridleless, saddleless performance...
I could only watch part of this during my COH stay... as it was just too emotional for me...
thinking then, that I will never ever be able to do something like this in my lifetime ...

Stacy Westfall

music by Tim McGraw

"Live As If You Were Dying" ...

No New News IS Good News !

Hello Everyone :)

Just have to note the date 2 - 22 - 11
For those that know me, you know why this date is symbolic to me!!!
For those of you that randomly stumbled upon my blog, or just know me virtually... my birthdate is 11-22

I've decided since I am so VERY FORTUNATE to be in Myeloma Remission, and GRATEFULLY I don't have any huge, dramatic news for you as I did in 2010, I will now write blogs on symbolic or interesting numerical dates.
Hence today!

I've always found patterns in numbers fascinating, but they tend to stand out even more now--
Perhaps in my next life I will be a mathematician, engineer, computer programmer, statistician, etc LOL

So for now, I just wanted to note this interesting date and let you know that I am doing ok :
I am on Cycle #5 of Post SCT Revlimid maintenance
I am on .5 mg of Revlimid, 21 days on, 7 days off
And so far, so good!
I only occasionally have a rash now
I still have crazy symptoms of Neuropathy... but not nearly as bad as when it attacked me in late Sept 2010 thru Oct, Nov, Dec. It began to lessen a bit in Jan and Feb...
OR have I just gotten used to it and learned to function numb, tingly, achey, and with weird nerve burning sensations???
I do feel tired and fatigued all the time and don't sleep more than 2 or 3 hours at a time... this is wearing on me... and I debate on whether or not to ask for some sort of "medical sleep assistance" ... any recommendations???

On the up-side of continuing Revlimid-chemo...
There must be some sort of hair-growing properties to it, as my new hair is growing like crazy... albeit dark and curly... but growing, growing. Hubby Jim wants to start on it, so he can grow hair. Funny when Jim jokes and says to friends... "O, I'll be starting Julie's chemo soon...." they of course look shocked and wonder what's up... then Jim quickly relates the hair-growing properties of Revlimid.
Grows eyelashes too as my original blonde eyelashes are once again long!

Funny how many people think my new dark "poodle do" is my ORIGINAL REAL hair and are so surprised to learn that I was always "Goldilocks" and the SCT chemo (Cytoxan and Melphalan) sure changed that for me!
So I quickly point to my still-golden eyebrows and golden eyelashes (when I don't have mascara on), and draw the relationship for people of how to tell a person's REAL hair color...
Which I did at a college staff meeting, by saying... "you know how you can tell a person's REAL hair color?????? (drum rolllll.....)
By One's EYEBROWS ... NOT the "Other Way" you've all be told" ... hahahahahahaaaaa
Great reaction from my colleagues thank you very much!! Yes, I'll be hittn the comedy circle soon!

And I will leave you with this amazing clip from the King's Speech movie... so very relevant in my life in so many many ways ... but that's an entirely different blog!!! For those of you that might be offended by swear words or are at work viewing my blog or have young young children around... you might want to lower the volume a bit...
Or not... LOL :)

I do think this was My speech

when I was diagnosed with Multiple Myeloma Cancer!!

I'll write again on 3 - 11 - 11 with my monthly blood test results
And in the meantime, create a Myeloma Kite here - as Celgene will donate to the IMF!

Thank you for enjoying my blog and being loyal followers of my life's musings!

Battle of the Whites- 2.9 on 2-9

Hi Loyal Blog Followers!

I sure appreciate your continuing interest and support of my blog musings!
I write because you've told me you look forward to my postings and updates, and worry when I don't. Thank you so much for caring!
And to those of you I don't know personally, but I've met virtually, thank you for your comments, support and recommendations. It's really awesome knowing this giant internet cyberspace is not so distant and anonymous afterall :)
And to those of you that are fighting the Myeloma battle along with me, I hope my postings are useful and interesting to you and I wish you the very best as you fight your fight with this crazy cancer that somehow invaded our blood and sabotaged our bodies...

Speaking of sabotage, I feel I am battling daily with my body to make good blood
I'm kinda sad to report today 2.9.11, that my White count has dropped to a 2.9
I've worked so hard to raise my Whites from 2.8 at MM diagnosis
And then battle back from Zer0 after Melphalan chemo decimated all my blood counts
I was so excited that many of my counts were normalizing in January, and my whites rose to a whopping 3.4 last month!

See...what I mean by working hard, is probably laughable to some of you...
I'm just not a Foodie!
Each day is a challenge to me to ingest somewhere near all the good foods, from all the food groups I need, to support my new Stemmies in growing good stuff to out-power the bad stuff

The irony is that this battle is not new to me...
After finally learning how to manage Calories after being diagnosed with Hypothyroidism in my early teens, I mentally tallied everyday what I ate, so as to not get FAT -- (I was chubby teen :)
I prided myself on eating good things to feed the machine
I don't drink soda or alcohol
I am a meat minimalist
I eat to Live, rather than live to Eat
And I used to ask myself ... regarding treats and junk... "is a moment on the lips, worth a lifetime on the hips" LOL

Jim shops -- I slice and dice

So after being diagnosed with Myeloma, I reinvented healthy eating!
I owned the food rainbow almost daily
I made sure to eat from all the food groups even more vigorously
I drank more water in a day then I used to in a week
And yes it all worked... my Anemia at diagnosis disappeared
My blood levels improved dramatically, and I kicked Myeloma's butt with the help of Revlimid, Cytoxan, Melphalan and a Stem Cell Transplant!

I was motivated to make Caprese after watching the food channels while at City of Hope

So why am I whining now... well, I'm really not... I'm just a little pissed off that all my efforts in eating and drinking so well, everyday, are being sabotaged!
But I know, sabotaged for a good reason, as being on Maintenance Revlimid (.5) is continuing to keep Myeloma off my personal planet, but it also drags my Whites down with it
And, perhaps not the smartest move... I've returned to work... to the scary world of gerrrmmmmyyy students- but wonderful supportive, caring,fun, interesting, fascinating, goal oriented students!

Yes, I really am grateful for my Remission and current "not My loma" status!
I really do understand that going from 3.4 to 2.9 is really not that Big of a Deal
But dang it.. I thought I might be closer to 3.9 than 2.9 after all this good eating and drinking I'm doing!!!
And I'm not referring to my GPA hahaha

Jim keeps me and Alissa stocked with our fav yogurt

Alrighty, until next time... Cheers to Water, Orange Juice, Yogurt, Greens, Greens, Greens, Rainbow Veggies and Fruits, Juices, Tofu, Nuts, Beans, WWBread, etc  ... and thanks to the changes in my system, I seem to be able to not have allergic reactions to Salmon, Tuna and meats anymore!

Fun to eat corn again after having my braces off a few years ago

And gotta loooove the variety of Flavors of Ensure for Dessert!!!!!
Looove to all of you! Gotta go eat and drink!!!
And yes, all the above pictures are from things I actually prepared, ate and fed my family :)

One Year, One Month Ago Today... and Poodle MakeOver Pictures

So I'm reflecting that TODAY  1 /30 / 2011  is One Year and One Month since I was diagnosed with Multiple Myeloma Cancer... and...

I reflect with amazement what I have been through since diagnosis 12/30/10, as life can almost seem somewhat, a wee bit, "normal" now.
I do often, very often, think how different my outcome COULD HAVE BEEN, and therefore how very different what I would be writing here today, would be...
I do reflect and take pause when others seem so affected by my diagnosis, treatments, hospitalization, recovery process and current appearance, and I wonder why I don't feel quite as stunned and shocked?

Perhaps it all hasn't REALLY fully sunk in yet?
Perhaps I just jumped aboard the Cancer Cruise and just did what I had to do... and presumptuously EXPECTED a good outcome??
Perhaps I haven't fully digested all this yet?
Perhaps it REALLY hasn't hit me yet???
Perhaps because I don't feel too horrible all the time and I hear far worse diagnosis and treatment stories... I don't really feel "cancerous"?
Perhaps... my bad memories are fading already?

Maybe if I had a disfiguring cancer or a more visible cancer
Maybe if I had an organ or body part removed
Maybe if I had to suffer even more than I did
Maybe then, I would REALLY feel like I HAVE cancer?

When meeting people I tell my story matter of factly
When thinking about having cancer I don't think I actually connect with it yet
When hearing people's reactions and responses, I then think, wow, I guess I really have been thru a lot!

Honestly, I feel so very, very lucky-
That I didn't have to endure cycles and cycles of hard core IV chemo
That I didn't have to endure Radiation at all
That I didn't have to endure a Tandem (2nd) stem cell transplant
That I didn't Puke my guts out for days and weeks
That I didn't get those awful chemo mouth Sores
That I didn't gain or loose extreme amounts of Weight
That I only had to be Hospitalized once, and for only a Month
That my Myeloma wasn't Multiple bone lesions Myeloma
That my Neuropathy has stabilized a bit... or have I just learned to live with it

Yes, although I do have an incurable cancer, I feel pretty good most of the time :)
I feel so blessed to have the fantastic medical support system I do
I feel so blessed researchers discovered chemos Revlimid, Cytoxan and Melphan KILLS Myeloma
I feel so blessed to have the amazing human support system I do
I feel so blessed to have been Diagnosed, Treated and determined to be in Remission in just 8 months!

And, strange... I never went thru the true cancer-bald stage, but just a boy-buzz that grew into a ton of wavy new hair, that actually grew so much, so fast, that I now get to trim it and experiment with trendy and goofy styles...

As promised, here's Ms Poodle's new Do:

 Groomed and Trimmed

Poodle no more!

 Dang, lots of hair...

Me and Chemo do just fine

 Goldilocks no more...

Hello instantaneous middle age

 My lil zebra decided to torment me with her new Goldilocks

Christine our amazing hair artist, entertained by my ever-present wackiness

Not the best representation of our new Do's, as the lighting was off

but Alissa's Blonder now and I'm all Naturraal!!!



Since then, I have swiped Scott's years-old spiking gel and I'm wrestling with the grey waves, and going for the Porcupine look! Thank you Myeloma, I'm having fun creating a new style everyday!

PS- for those with Myeloma reading this... Revlimid chemo seems to enhance my hair... Cytoxan and Melphalan chemos thinned my original hair slowly, before it was replaced by my new hair



Poodle's going in for a Grooming

1 / 22 / 11    :)
Well be careful what you wish for as they say...

As a young girl I wished for long, curly-wavy dark hair...
During the 1980's I even faked my way to curly hair with perms!! (Hmmm... maybe all those chemicals caused Myeloma?)

But that was long ago... and thanks to cancer and chemo, I did ironically get my wish for curly-wavy hair! So crazy!!! Initially it was novel and fun for a lifelong straight haired blondie! Interesting and fun to work with too. But when I look in the mirror and see pictures of myself, and can't believe "who" I see, and how chemo affects our hair color and texture!

Hello Chia-pet head Julie!

But honestly, I'm kinda over HOW this Fluffy, Curly, Grey Poodle hair looks on me now... it's a been a wonderful ride ... and don't get me wrong... I am very very grateful for how full, soft and plentiful my new reformatted remission mini-locks are... but I'm over it now... BECAUSE... I have been instantly transformed into looking a lot Older and more Serious on the Outside, than I am on the Inside! And as I've mentioned before, I have unwittingly become my own sociological study. It's crazy how DIFFERENT people treat me and look at me while looking like this, compared to being blonde. I know, I know... yes being Blonde has all the "stereotypical" reactions...

Yikes, who's this AARP member on the beach in Malibu??

But if I was still as young and beautiful as these gorgeous girls...

I definitely would be patient enough to grow it out and revel in my curly locks like darling Courtney... but I'm not in my 20's anymore so the grey poodle is going in for a "grooming" this coming week... Hello Jamie L Curtis?

Check back everyone, as I'll post pictures later this week :)

And after posting this, I met the wife of the THIRD person in my IMMEDIATE AREA that has Myeloma.... ok... maybe there IS something to those oil pumping grasshoppers on the hills adjacent to us...

1/11/11 = cool numbers... and so are My new numbers

Hello Everyone-
Today is January 11, 2011 but I like 1/11/11... wonder what 11/11/11 will bring...


I've come to love interesting numbers... in many ways... especially since my Myeloma diagnosis brought such Interesting Numbers into my life LOL
Numbers have become quite symbolic in my life... well they always have been, but I have numerical MARKERS now that I didn't before. So sorry to everyone and my students who now have to endure my... "Oh wow, did you know....that on... blah blah... I was blah blah... and your BD is my blah blah, or your ID# has my blah blah" hahaahahahaaaaaa

13 = FRIDAY THE 13th !!! ... the date of that fateful 2009 "routine physical" that began EVERYTHING!
13th Chromosome may have something to do gentically with Myeloma...
 
14 = my first Hematology appointment (and so ironically, the date I was hired at my favorite college MANY years ago)
 
30 = my diagnosis date- just a day or two before the New Year
 
5 =  the 4th of July weekend- as the 5th is my new "birthday" they tell me; the day I received my own Stem Cells back to regenerate my blood after decimating the myeloma cells with chemo, chemo, chemo
 
22 = my original birthday... and I have so many coincidences on the magical 22
 
Today, 1/11/11 (double that, and you've got my 22)... seems like a numerically fun day to report in my amazing Remission status numbers from my most recent blood work...
Happy New Year to me!
 
My Whites have jumped an amazing .01 from last month's 3.3 to this month's 3.4 woo-hoo!! Almost sliding into the low end of NORMAL, which is 4.0 (and not my GPA!)
 
Go Reds... they're Nnnnnormal!!! at 4.39 - and several other related levels there are Normal too
 
Neutrophils... (still have to look up their significance, but was told they matter!) are Normal
 
Electrolytes, Creatinine, Liver function tests, Proteins = Normal
 
AND the BIG MARKERS... my IMMUNOGLOBULINS... the IGG, IGA, IGM...
are lo, lo, lo, lowwww and sub normal low as a result of the stem cell transplant and the lovely Melphalan chemo
At diagnosis... my myeloma infested IGA was over 5600 !!!! its now so low the test results show a < !!
Haaa to you myeloma I have have a bunch of <<<<< less than symbols symbolizing YOU!!!
IGG = 551
IGA = <25
IGM = <20
hahahahahahahaaaaa on you Myeloma!!! We gobbled you up and spit you out of town!!!
 
Yes, I know... low, low, low would "normally" not be good... but for me, right now... I'm liking it!
Here's a fairly good description of who these different Immunoglobulins are:
Immunoglobulins 
I'm going to have to study this myself, as glancing through this... as I have done millions of times, but not much stuck during 2010, I do see a relationship between things there and perhaps WHY I developed Multiple Myeloma!! Dang my sensitive system... allergies, allergies, low thyroid, genetics, etc.... hmmmm
 
And lastly... M-PROTEIN was Not DETECTED by Immunofixation
Beta-2-Microglobulin is Normal
Light Chains = Normal or right on the low end of Normal
And guess how many pages my test results were... 22 !! not kidding!!

I'm so NNNNNormal now... my blog is getting rather boring!!!! I'll be losing my Drama-Queen title fairly soon! But I know... Normal has never been a description that comes to mind when thinking about me :)

So here's to a great beginning of 2011 on 1/11/11 with 22 pages of good news!
I wish all of you the very best for 2011 and may your numbers be healthy, happy and repetitiously fun!

6 Months Post Stem Cell Transplant... Today

Haaaaaappppppppyyyyyyyyyyy New Year Everyone !

Helllllloooooooooo 2011 :)
Good Riddance 2010 !!!!!

12.30.2010 came and went... and yes I've been quite reflective and still shocked with my 12.30.2009 MM diagnosis... still processing what I encountered, endured, experienced and dealt with in 2010...

But when the 2011 clock rolled over...
I was energized with optimism and gratefulness...
Thrilled with the actuality and reality that all I had been through in 2010... equaled SUCCESS and I am truly in REMISSION from Multiple Myeloma Cancer!
How blessed am I !!! And so appreciative for all the unwavering support I have received from all of YOU, so appreciative for the amazing medical care I have received from Kaiser and City of Hope Doctors, Nurses, Staff Members, etc! YOU have all been the TEAM that Saved My Life!!! Thank you, thank you!!!!

I am slowly learning and accepting my "new normal"...
I am not (ouch) the energizer-bunny I used to be... and when I unwittingly revert to that mode... I am reminded by exhaustion, dehydration, neuropathy, aches and pains, and by those around me.
I feel a fraction of who I used to be, who I "should" be and what I am capable of... but dang it... I tell myself.. you've survived cancer, cancer treatments, chemotherapy (3 kinds!), a Stem Cell Transplant, hospitalization for a month, endless doctor appointments, etc... I guess I can cut myself some slack...

I still have a difficult time seeing myself as a cancer-survivor ... but I am rudely reminded when I catch a glimpse of my new reflection.
Reminded when I look in the mirror and see my Hickman catheter scar on my chest.
Reminded when I feel the damaged veins in my arms.
Reminded when I see my crazy cancer make-over grey curly hair!!!!

I must confess... I miss my Goldilocks...
I must confess that life IS DIFFERENT NOT being blonde anymore...
I must confess that outsiders, strangers and those that know NOTHING of my journey... now look right beyond me, right past me, not knowing that the grey poodle was once a shimmery Palomino

I have unwittingly become my own psychological experiment--
And that will be a (brave) introspective blog entry one day ...
On BEING INVISIBLE...

BUT for now..........
2011 is beginning wonderfully!
My recent blood test results show many levels in the NORMAL range now!
AND...
Southern California Had Snow!!!! and What a Treat it Was:

Pawsy enjoying the cold white stuff

Previously, these were sun-basking chairs!

Sunny and RedBear growing winter coats fast!

Yes, I am very very blessed...