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

Thursday, April 27, 2017

Mystery Status!


Hello everyone-

For the first time in a long time, I don't have any dramatic news to report, as I'm waiting to receive my dramatic news! See, this was my very first week without Darzalez! Protocol for Darza is weekly infusions for weeks 1-8, then beginning with week 9, we get a break and begin infusions every other week. So who knows if myeloma is still being pummeled, or this treatment break may be fueling myeloma's power? I have no idea, as I was not "required" to do my regular weekly labs, since I had Tuesday off from Darza. Doing weekly labs has become like a "security blanket" for me. I really look forward to knowing what story my blood will reveal weekly...

But alas, I'm not chemo free, or on a full treatment break, as I began my current 21 day cycle of Pomalyst, a week ago. But with my looooow CBC's, we opted this cycle to alternate Pom 2mg with 3mg. So again, it's a wait and see how this reduced potency affects myeloma's powers. Additionally, since my myeloma markers from earlier in the month were so impressive, we've downsized Dex from 40mg per week to 20mg per week, with the option of 4mg on a day or two following Darza, if my side effects become overbearing. But I must confess, I haven't taken my friend Dex yet this week, as I packed a few appointments and events in this week, and couldn't figure out how to do these things, knowing the Dex crash would hit in the middle of my plans. I'm laughing as I write this, as it all seems so surreal and absurd!

Seriously, how crazy is it, living day to day, week to week, month to month, etc, having little control over what's happening to me with side effects, and not knowing if cancer is revving up, staying the same, or still running scared from treatment.  If I could, I would have blood tests weekly for the rest of my life, as that's really the only way I know what's happening internally with me. There are times when I feel ok, and think I am doing well, and think my status is stronger, only to find out, that's not the case. And the reverse, there are times when I feel lousy and think I must be headed in the wrong direction, and I find out that I am actually doing ok. No doubt myeloma, you keep me on my toes, with no room to relax. 

Tomorrow is the annual SCT - BMT reunion at City of Hope, where I had my SCT July 2010. I'm coming up on my 7 year SCT birthday-anniversary. Wow! And this event is huge. Hundreds, but looks like thousands, of people attend. It's a pretty big media event too. And our amazing doctors, nurses, hospital staff etc also come, to celebrate with all the patients. They give us big buttons with our survival months or years noted, a Tee shirt commemorating the event, and host a huge luncheon with speakers and entertainment. Very cool event. Couldn't be on a Dex crash for that, right!

 Here I am at my VERY FIRST 
SCT Reunion, April 2011
Look at that crazy hair growing back
after my October 2010 buzz!

Finally, adding to the list of unknowns, and compounding my "Mystery Status" is the outcome of my long overdue Skeletal Survey - Bone Scan that I FINALLY did this past Tuesday. So I took advantage of my little Darza vacay Tuesday,  and I went for the  bone xray scan. Yes long overdue, due to me. My Dr had scheduled me for that way back in December, but with not feeling well from crazy side effects of escalating myeloma (before Darza's success), I hadn't felt like doing it. I know, geeezzz, not a huge deal, but actually it was, as myeloma's chronic fatigue can be disabling. And I was having side effects from Velcade, higher dose Pomalyst and high dose Dex, etc... Anyway, I did the scan on Tuesday, so the waiting game begins. Will the scan show solid healthy bones, or will I be thrown another curve with bone lesions? Plasmacytomas, I believe is the official term.

My next Darza infusion is May 2, so I'll do labs on May 1. Whew! Status check coming soon! But my next Dr appointment isn't until May 16, to discuss EVERYTHING, and find out how I'm doing with this new protocol of a week's vacay from Darza, and to find out the results of my scan. You think I can wait that long for the results? Nope, you guessed right. I'll be pestering my nurse on May 2 to consult with my Dr in advance :)) I let you know, when I know, when all these myeloma Mysteries are solved...

No matter how ridiculous my situation is
Nature always reminds me how fortunate I am 
To Be Alive!

Hello perfect little ladybug!

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

Monday, April 17, 2017

Hello Neupogen/Zarxio- Let's Pump Up This Immune System, plus Good News Stats

(Updated below!)

Hello everyone, and thank you for reading and following my crazy adventures. I have a Dr appointment 4.18.17, so I will update you with all my recent stats tomorrow, and tell you about my crashed immune system and getting Zarxio for 3 days in a row this past week. Thanks for checking in, and see you tomorrow with numbers!

4.18.17 UPDATE!! NEW NEWS!!

Hello again everyone- been a busy last couple of days. As I've written before, I often think I won't have much to say from post to post, but sheesh am I wrong about that. Seems like so much happens in my MyelomaVille life in just 10 days, between my "On The 7's" posts. Here's what's been going on:

My WBC (White Blood Count) crashed to 1.7 (Normal range = 4 -11) on April 10. Most likely a result of my 3 week standard course of Pomalyst. Unfortunately, this pill form chemo/immunotherapy wreaks havoc on my fragile immune system, so my Dr put me on 3 shots of Neupogen/Zarxio last week. Yippee, as I do just fine on these, as I am so short on WBCs (White Blood Cells), I don't have the "crowding" and painful bone pain many report when on "granulocyte colony-stimulating factor (G-CSF), filgrastim". Fortunately, this brought my WBCs up to a whopping 2.0 and then 2.8 (Normal range = 4 -11), from yesterday's labs. My Dr was very concerned that my ANC (Neutrophils) had dipped to Neutropenic status, (I think she said .99, but I didn't see that on my lab report), so that was another reason she offered me the Zarxio shots. I am now a "whopping" 1.28 (Normal range 1.80-7.70). When I say "whopping", I am of course being sarcastic, as I am sadly very Immune Compromised, and try to live as "Bubble Girl" when I can lol. So that's the "Bad News".

 My chemo buddy Josephine-Josie and I
entertaining ourselves, the lab staff and guests with our antics.
Can you imagine being on chemo, bounced up by steroids,
and slammed down by Benadryl?! Pretty funny combination that causes
hyper-ness and sleepiness all at the same time lol

And now the GOOD NEWS:
THANK YOU Darzalex, with Pomalyst, and Dexamethasone, you are pummeling Myeloma!

From a high of 4130 to the current 527
Still abnormal, but Wow!

Even my IgG is coming up ^

My "sorority" stats are good too ^

Although I am still "Abnormal" (lol, yes in many ways), 
my M-Protein at recent labs "Is Not Detected"!
Previous M-Protein spike was as high as 3.6 in February!
and now... wow, just wow, 
Not even on the scoreboard ^
 This test and result is new to me
Will have research this one ^

 Current CBCs
A mixed bag, but not too shabby.

Now this one I will have to research too, 
as I wasn't wanting to join the IgG Kappa sorority.
I remember reading how Darzalex affects IgG
and I was a bit concerned about this, as I'm IgA myeloma...
I previously found a reference to it here

Here I am checking in today, bright and early (for me)
at 8:50am for my Dr appointment and 6-7 hour treatment.
Today is infusion #8
Can you believe that!
How time flies when your weeks are taken up by
cancer, chemo and side effects-
Thank you Dex steroids for propping me up
and making me feel ok once a week!

 The amazing check-in ladies
Arcie and Robin.
They've been the smiling faces, 
wonderfully caring ladies, greeting me 
for 7 years now. Just loooove them!

And here's my new Darzalex schedule-
protocol is weekly, for weeks 1-8, 
then reduces to every other week for weeks 9-24,
then reduces to monthly until "disease progression" or
I become "refractory" to it and have to hunt for another treatment.

My life!

Yes, this is my life. I have cancer. A cancer called Myeloma. A cancer I knew nothing about until December 30, 2009. A cancer that has taken over my personal life, stolen my career, limited me in ways that are so profound, I can't even comprehend it. I am still in disbelief and denial. Even on treatment days, when I check in, consult with my oncologist, and check into the chemo lab for 6-7 hours, I still feel like this an out of body experience, and I am just "posing as a cancer" patient, an "imposter" going through the motions. But when I'm "invited" to the chemo chair or chemo bed, my IV needle inserted, medicine bags with my name on it hung, drip drip goes the infusion into my veins... reality of my status does slam me. When I chit chat with fellow patients and we exchange our respective "horror stories", reality does hit me. When I "coach" new members of this "unwanted club", and unwittingly sound so knowledgeable, reality does hit me. When I mention I have been doing this for 7 years, and will continue doing this for my "forever", reality does hit me. Other's shock and awe of my status, of my continuous treatments, of my incurable cancer diagnosis status, then the impact of my situation hits me.

When I view and discuss my Labs, reality hits me. When I consult with my Doctors and Chemo-Pharmacists, and they are very concerned and serious, reality does hit me. When the term "high risk" references my status, reality hits me.When my myeloma morphs, mutates and outsmarts my treatments, and my cancer stats escalate, reality does hit me and hits me hard, and I get scared. But today, I am encouraged and have new hope for additional successful months with Darza, Pom and Dex pummeling this monster within me. Myeloma patients just hope and pray our treatments continue successfully, buying precious time..., hoping the amazing medical scientists and researchers continue to develop additional meds to treat this stealthy, sneaky cancer, that will always outsmart and return with a vengeance. It's just a matter of time...

It's a strange and scary feeling, that my life is entirely in the hands of others, that my life depends on highly complex scientific molecular and cellular knowledge that I barely understand. It's overwhelming that my life entirely depends on targeted chemicals coursing through my veins, joined by pills cunningly circulating in my blood stream, their mission to annihilate cancer cells, and to keep me alive. Imagine wondering if this internal chemical warfare will last months, or a month. Imagine wondering, always wondering, treatment to treatment, blood test to blood test, if my personal "Team Pummel Myeloma" can outsmart and out chemical myeloma. Imagine living day to day, wondering... wondering when the myeloma roller coaster will jerk me in that "other direction".

Yet, I remain hopeful always, as I Want To Live... for a long time! 

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

Friday, April 7, 2017

Thank You Medical Science, and Brilliant Researchers! You're Saving My Life!

Hello to Hope and Successful Treatments!

If you've checked in here, between my "On the 7's Posts", you're up to date with all my good, and crazy news. I don't have any new dramatic news since my April 1st, "NO APRIL FOOLS JOKE" post of amazing treatment success and crazy side effects. Truly, I am still in shock how fast Darzalex with Pomalyst and Dex steroids have brought my IgA and M Protein down. I am so very grateful to all the brilliant medical scientists and researchers working on medications to treat myeloma and I am so indebted to all these brilliant minds that work so diligently to keep us myeloma patients alive!
I do however, temper my excitement with myeloma's reality, that this treatment will not last "forever", but I am thrilled my body and this "monoclonal antibody" is able to outsmart myeloma, at least for now.

Here's my incredible results again:

 Yes, your eyes do not deceive you!

Of course, my levels are still "Abnormal", as my test result sheets scream at me all the time. But seriously, from "death's doorstep" Nov, Dec, Jan, Feb... this is incredible beyond words. My Doctors do remind me of my "high risk" status, as I tend to respond well initially, then boom, myeloma quickly outsmarts, mutates and wins again. But, today, this week, this month, I am beyond grateful for my status.

I won't "complain" about all my crazy side effects either, as I have fully blabbed about those in my previous posts. Nothing has changed with that, and I "cowgirl up" and suffer through my pain. Darza infusion #6 was Tuesday, so I felt ok Tuesday and Wednesday. Thursdays I wake up dizzy, ditzy, groggy, mentally fuzzy, puffy, swollen and achy. And that continues and worsens throughout the day, night. Fridays (today), I wake up even more dizzy, ditzy, blurry, groggy, fuzzy and the nasty fever-like nerve pain begins. But I keep reminding myself of how well I am doing on a molecular, cellular level and I push through. I am very grateful to be here to tell you my story.

Lost another dear friend and colleague~
Here we are late last year, 
battling together at the Chemo Lab. 
Armida lost her battle this past week, 
and I am so sad for her and her family. 
Stupid, worthless cancer... 

But life moves forward, and I take one day at a time, doing what I can on the few "good days" I have. I've needed to take one of our kitties to the Vet, but just haven't had the helium to do so, but her URI became concerning, so I was able to get an appointment on Wednesday, knowing my "crash clock" was ticking. Look what someone had brought into the Vet's office. A box of little baby opossums, who's momma was hit by a car. Thankfully, still many loving and compassionate people in the world. The babies are being taken care by a wildlife rescue. 

 Awww baby opossum

I know, you're worried about me handling wild animals and getting cooties, germs and diseases. Well by now, you know I worry much more about human contaminates, not animals, as they are so clean! Humans... not so much lol. Yes, I scrubbed up, and washed well after handling the little cuties! 

And yes, I still "drag" myself out to the arena, every day I can, for just a bit of exercise, picking up "horse apples". It's really the only exercise I get, except for walking to and from my car, to my medical appointments, and on good days, I even take the stairs! I try to move around each day, no matter how awful I feel. I am "tormented" by the Spring beauty around me, wishing I could run through the fields of Poppies in bloom, or hike the horse trails behind me, or just take a walk down the road like I used to... but I accept my reality, and accept that "Less is More", and do what I can, when I can.

I laugh at the ironies of my life. I look to the heavens, and quietly yell at the "universe" for my predicament. I marvel at what I have been through since December 30, 2009, and take deep breaths of appreciation for the life I do have. I am here, I will fight to stay alive, and I bear with that which is tossed my way.
I am not afraid of dying... I am afraid of not living...

Mr Boots says
Thank you for reading and caring :))

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

Saturday, April 1, 2017

NO April Fools Joke... This Is For Real!


"April Fools' Day (sometimes called All Fools' Day) is celebrated every year on April 1 by playing practical jokes and spreading hoaxes. The jokes and their victims are called April fools. People playing April Fool jokes expose their prank by shouting "April Fools"! Some newspapers, magazines, and other published media report fake stories, which are usually explained the next day or below the news section in small letters. Although popular since the 19th century, the day is not a public holiday in any country." (From Wikipedia)

So with a loud cheer and a huge smile on my face, take a look at these results, and THIS IS NO APRIL FOOLS JOKE! I'm still in shock! :))




So even though I have been really challenged with crazy side effects, I would say that it's all worth it, right! This week began with extreme fatigue and surprise diarrhea, but my friend Dex steroids quickly took care of that on Tuesday into Wednesday. I crashed late Wed and into Thursday, Friday. I feel I little better today, but "ache" like I have a mini-fever or sunburn, the diarrhea is starting lol, and I have extreme fatigue, but overall, it's better than it's been all of March!

I have completed 5 Darzalex infusions so far, beginning Feb 28.
First infusion was just Darza and Dex.
Second and Third Darza infusions we tried with Velcade subQ shots (and Dex), but the crazy "pseudo fever" skin pain was unbearable, so I quit that.
Fourth and Fifth Darza infusions were with Pomalyst at 3mg (with Dex).
Fortunately, the ouchy skin side effects lessened just a bit just this week. Pom causes extreme fatigue and no helium, but this cocktail combo is better than what I experienced with the Velcade Darza combo. But now that I am several weeks into Darza, I do believe the ouchy fever-like skin pain is Darza, so perhaps Velcade may just be my friend down the road.

Needless to say, I am beyond thrilled with my current Myeloma stats. Pretty incredible right?!! I always seemed to respond well to the meds and treatments, so when my numbers began to soar, I was truly concerned. I know eventually Myeloma will outsmart Darza and Pom, but I sure hope I get many many months of treatment success. To be honest, at the end of 2016, beginning of 2017, I was getting scared. I wondered if my skyrocketing IgA and MProtein meant the "beginning of the end"... It's a crazy way to live, knowing that if your body does not respond to treatment... that's it...

Thank you magical bag of Darza
coursing thru my veins.
outsmarting and killing those evil myeloma cells!

Here I am at 20ish
I will always wonder 
Read this! ^

Thank you for reading, commenting and caring! It means a lot to me that you care and appreciate my posts! Let me know how you are too!

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

My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg, 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.