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

Friday, April 29, 2011

Celebrating Thousands of SCTs & BMTs


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, April 13, 2011

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...

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????

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..)

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!!!

Friday, April 8, 2011

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...

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

Tuesday, April 5, 2011

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:

Standard Range =
0.8 - 2.2mg/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



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

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 :(

Friday, April 1, 2011

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...


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, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
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 chemo
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 is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)


Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.