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

Tuesday, June 27, 2017

Can All This Be for Real? Thanks Myeloma for Ending My Career...


And the count down begins... Tuesday, Wednesday, Thursday, Friday..., June 30... and poof, my 30+ year career as a College Counselor is over... poof, done, gone, over... next chapter...

My head is so full of thoughts, my mind is overwhelmed with too many emotions to process. What happened to my life? How did I get cancer? When did I get cancer? How can all this craziness really be happening. Who am I? What has become of my life? ... Myeloma has become my life, stealing my life, reinventing my life...

So many events, so much of my life, so much me... here...

"Happy Retirement Julie"!!! so many exclaim and wish me. I smile, yet cringe inside. No this is not a "happy" retirement. This is not a retirement by choice. This is not a retirement wrapped up with a pretty bow of final accomplishments and satisfied chapters of completion. This is not a retirement of heading off on "bucket list" vacations. This is a "disability" retirement. An illness retirement. A medically "forced" retirement. This is not "my choice". This is cancer and treatments making the choice for me. This is a cancer caused retirement.

I've had a wonderful life. A wonderfully rewarding career as a College Counselor. It was my "calling". My nature is to help others realize and pursue their dreams and goals. I'm an intuitive helper. A natural analyzer. A great brainstormer. A realistic dreamer, opening pathways for others to dream their dreams and follow their goals. This is my passion. I love seeing the excitement of students discovering their talents, skills, abilities and confidence. I love helping others pursue their passions. I love researching pathways and options. I love the journey with students. Their journey of self discovery, self awareness. I'm all about the "what if", "why not", "try it out", "go for it"... 

And then cancer edited me. Cancer stopped me cold in my tracks. Well tried to. I didn't really "absorb" the seriousness of my diagnosis 12.30.2009. January 2010, I shared my status with my colleagues, made some work schedule changes, and cautioned everyone about my "compromised immune system", and carried on as "Counselor Julie", on chemo, on steroids, with crazy side effects, continuing to see students, at both campus offices! Until my July 2010 Stem Cell Transplant. That woke me up. Oooppss, guess I am a "sickie". Wow, guess I do have a serious, incurable, terminal cancer called myeloma...   

I tried so hard to be me. To return to "normal", all the while mouthing the words, "this is my new normal". 2011, 2012, 2013, 2014, 2015, 2016, 2017.. I kept thinking "things would change", I'll magically be better. Myeloma doesn't stand a chance with me... push it down, push it away... treat, treat, treat. This chemo, that chemo. These steroids, those steroids. More chemo, more treatments. More chemo. Chemo cocktails. Injections. Immunotherapy. New options. Running out of options... Numbers up. Numbers down. Numbers up, up, up and away. I'm beat up. I'm exhausted. Myeloma owns me. I have to accept...I'm a cancer patient, in continuous treatment. I have to accept...
Goodbye sweet (new) office I hardly used...

To Be Continued.... 

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

Saturday, June 17, 2017

And Just When I Think Things are Leveling Out...

Hello 6.17.17

Can I say it again... Yep, I thought not much would happen in just 10 lil days between posts :))  But who am I kidding, this is life on the Myeloma Roller Coaster!

Not long after my last post, I took my myeloma status labs. I was really looking forward to knowing how I was doing, since beginning the 2nd phase of the Darzalex protocol. See, for the first 8 weeks, Darza infusions are every week. Then beginning week 9, infusions are every other week. Then beginning week 25, infusions are once a month. Got that? Here's the dosing "fine print".. It's really confusing at first, then it all makes sense. With my plummeting numbers and treatment success (in just 2 months from the initial weekly treatments), I was very curious how this 2nd phase treatment, every other week, would fare.
What's your guess what my IgA did???

Whhaaat? Yep, numbers don't lie. Up I go again. Can you believe that? C'mon Myeloma, stop messing with me. I laughed when I saw this. Shocked? No. Surprised? Yes. I really thought I'd have at least a few months of stability, and if I was "lucky", even continued declining stats. Oh well. Not the case. Honestly though, I need this reality slap, to get me out of my denial bubble. I need a wake up call reminder as to why my diagnosing oncologist referred to "my type" of myeloma as "high risk". My pattern- I respond well to initial treatment, but then "unrespond" fast and furiously, becoming "refractory" to the medications, and my myeloma gets aggressive fast. 

Fortunately, this month's results might not be as mysterious as some of my other roller coaster ups and downs. When I met with my Dr back in May, at the start of the every other week protocol, we discussed my great response to the Darza, Pom, Dex combo, and decided to lower the steroids from 40mg per week to 20mg, as I've been on Dex steroids since mid 2013 continuously (except for initial treatment in 2010). I was happy to give this a go, as I do worry what non stop steroids are doing to my body, while helping to pummel myeloma.
So for the remainder of May into June, perhaps the lower dose of Dex did affect the impact of Darza and Pomalyst? Plus, if you know me, and, I took the opportunity to lower the steroids a step further. In light of the new every other week Darza dosing, I went ahead and opted to NOT take the Dex steroids on my Darza week OFF. So not only did myeloma not have Darza attacking it weekly, myeloma got a break from Dex steroids smacking it around too. Oooppss! Maybe not such a good idea. Ok, ok, I will do Dex weekly, regardless of the Darza break. (Yes, this was all discussed this with my Dr, and she of course agrees.)

And if all that doesn't spin your head, let's not forget the 3rd component to this "Triplet Cocktail", my pal Pomalyst, and Pom decided to throw me a curve again too. Can you guess what my recent labs also showed? Yep, Low low low WBCs. Hello to Neutropenia again. And the irony, guess what I had been doing recently? Everything someone Neutropenic should not. If you recall my previous post, I was so excited how well I was doing after seeing my mid May labs, I went to my office- (cooties), went to the grocery store- (cooties), and was excited to buy, prepare and eat FRESH fruits and veggies (cooties). All this, not knowing I was Neutropenic again, and "should not" have been exposing myself to all those potential pathogens! Fortunately, nothing bad came of my "wild adventures" to my office and public places, nor from eating fresh fruits, veggies and Bleu Cheese dressing! As compromised my immune system is, I somehow manage to stay quite healthy. Must be all the ranch dust and animal activities strengthening my immunities (lol), and all my OCD anti-bacterial contamination precautions that everyone laughs at me for :)) 

Of course I was eating "everything" (fresh), I should not have been..
But so yummy to enjoy, to feel carefree
and feel "fake healthy", not Neutropenic for a change!

Not long after seeing my lab results, I knew the phone calls coming in early Monday morning were my awesome Dr and Nurse, informing me of my status and they had already sent the prescription in for my WBC immune system boosting Neupogen Zarxio shots! Here we go again. Cowgirl up Julie, grab that belly chub, get that needle full of that magical serum in, boost those cells right back up! Welcome to my ever present, unpredictable predictable myeloma roller coaster.

I'm so brave now... 
Just had to wrap my head around
"This Is My Life"... forever

How about some good news: 
My Serum Protein Electrophoresis, M Protein, still shows as "Abnormal", but "Undetectable", so although my IgA is showing upward movement, I'm hoping it's just a fluke this month, due to the reduction in meds. My other labs are trending pretty good, generally in the low range, and if I'm lucky, the low low edge of low-normal. So overall, I would say the Darza, Pom, Dex cocktail is doing it's thing and keeping myeloma suppressed, even with all the ups and downs.  

 I'm often asked how I pass the time during the 6 hour infusion:
Lots of selfie practice
which entertains the other patients

 Lots always going on in the chemo lab and
I've gotten very proficient texting and writing one-handed

 And wonderful nurses and patients too chat with

 And other types of "cocktails" to dream about!

All in all I am so very lucky to be in the circumstances I am. Wow, 7 years fighting this monster. Can you believe that. There are so many patients that haven't had the treatment success and luck that I have had, so I count my blessings daily. Do I eat only "organic" now? No. Do I eat and live healthy and balanced? Yes. Do I remain grateful and optimistic? Yes. Do I do anything extreme to compromise my health? No. I have a busy and rewarding life, but incredibly limited compared to my pre-myloma life. Am I bitter? Sometimes. Am I depressed? No. Am I angry? Yes. Do I accept my circumstances and situation? No and Yes. I am still in disbelief of my diagnosis, but I accept what has been dealt my way, as I know... "I cannot control the things I cannot control", so I constantly analyze it, try to understand it, research it, and always move forward, finding happiness and delight everyday, no matter how yucky I feel, or how pissed off at myeloma I am. 

And then it hits me. I've had to confront, process, treat, deal with Myeloma mentally and physically for over 7 years now. Constantly. Not a day goes by that I cannot not think about Myeloma. I have cancer. Incurable cancer. For the rest of my life. It is me, and I am it.

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

Wednesday, June 7, 2017

Some Good News, Minimal Myeloma Drama and a Few Crazy Adventures!

Hello 6/7/17

How about a post with mostly GOOD NEWS for a change. And a few "entertaining" stories!

The Hot Topic Headlines:

Not bad CBCs:
Yes my CBCs have rebounded since dropping dramatically the last few months. After my "trauma" with learning how to self-inject Zarxio, my WBCs cooperated and bounced sky high... well high for me lol. I think I had one WBC result actually in the normal range of 4.0, but it has since dropped back into the 3's. But hey, I'll take that any day over Neutropenic status of 1.7, 1.9 a month ago!

It's Darzalex "break week" and I've had minimal residual side effects from 11 cycles of Darza, Pom, Dex. (Or perhaps my body is just getting "too" used to all the healing chemicals lol.) In the last few days though, my skin is starting to feel achy, some Neuropathy in my hands and feet, and strange... sometimes I feel like I have tiny bugs crawling on me lol. But that's probably from the all my outdoor animal chores, as I think there are tiny bugs dropping from the oak trees, seeking me out as their host. But overall, I do feel better than several months ago when my myeloma numbers skyrocketed.

Next Dr appointment, with myeloma marker results, is coming June 14. This will reveal how I am doing on the 2nd phase of the Darzalex protocol of the every other week infusions. I'm really curious if Darza every other week, along with Pomalyst and Dex can still effectively keep myeloma at bay??!!What a miracle drug it is, just as it is, as it has been for me up to this point!

This past Friday was the last college Graduation Commencement of my career, and I (sadly) had to be a "no show". I really struggled with whether I would, or could attend, as 1- it was super early in the morning, and I rarely ever feel good in the early mornings, plus Fridays are now my chemo crash days, with Tuesday Darza infusions, and 2- it was just too darn emotional for me, as my "retirement" June 30 is not "by choice", but "forced" on me, thank you stupid myeloma for ending my beloved career as a College Counselor. So due to delayed Darza, Pom, Dex side effects, I wasn't able to attend my last Commencement as an "employed" Counseling Faculty Member...

So this month, my task at hand on my "good days", is to clear out my new office I hardly had a chance to use. So sad. My career began October 1981, fresh out of college myself, and I loved helping students realize their goals and dreams for almost 36 years. My career as a college counselor was incredibly rewarding, energizing, and always so wonderfully challenging in so many ways. Never a chance to get "bored" or did I ever have any regrets about my career choice. How my life has flown by, and how I still can't believe that cancer completely edited my life... I went in yesterday to begin this process, and just parking on campus near my office felt so "normal", yet so bittersweet sad. Walking into my office was so familiar, yet so strange and unfamiliar, as I haven't been able to be Counselor Julie in person since October 2015. I had invited my Scholarship recipient Tanya in to brainstorm her life, degrees and career path, and she will probably be my last "in person" "official counseling appointment". So wonderful to see my colleagues and catch up. How I miss this "normalcy" in my life. How I miss the daily routine of being a college counseling faculty member. How I miss all the stimulating conversations of "Saving The World, One Student At a Time".

On the homefront last month, on my Darzalex week off, I was able to have a few experiences that gave me a semblance of "normalcy"! For so long, FATIGUE and exhaustion from my low low low CBC's and my high high high myeloma stats, caused me to not be able to do much at all. For a long time, I just haven't had much "helium". I push myself to accomplish daily tasks, but most of the time my body is saying STOP and "chill out", but my mind is always telling me to go go go, accomplish accomplish accomplish! This roller coaster myeloma lifestyle only gives me a few good days a week, and often those days are IV infusion treatment days, thanks to Dex steroids. But this past month, with Darza treatment success and the WBC boost from Neupogen Zarxio, I actually had a bit of energy. How I explain it to people is that feeling unwell and sickly is my "new normal" and my norm, but feeling well or "normal", is now my "abnormal"!

Shockingly I managed to take the little doggies for a super fun walk with my ever so loyal, supportive friend Kathy. A few days later, on the way home from a Dr appointment for Jim, I actually went grocery shopping! These events are most likely uneventful and mundane to most, but huge accomplishments to me, as 1- I generally never have the energy to do either, and 2- never know what my GI system will ambush me with when away from my bathroom, and 3- I tend to strategically AVOID public (germy) places like grocery stores, WalMart, shopping centers, public events, etc. But I was pumped up on WBC building Zarxio, and enjoyed these events like a kid at Disneyland!

The Girls-  Portia, Nala, Hanna
Yippee for taking a walk and feeling somewhat "normal"!
Thanks for the super fun walk and awesome picture Kathy!

Last Tuesday became a complicated and actually a comical day. I was at the chemo lab all day for my Darza infusion, while our son Scott took Jim to his Dr appointment. He's had extensive pain and swelling in his blood clot leg, that just won't subside. He's also had a strange sore on his foot, same leg. Ironically, we both wound up on IV's on the same day! Sadly for him, it appears that the veins in his bad leg are not functioning properly, and we have to pursue this further. We just can't believe what has become of our lives, as health issues dominate and control our lives daily. Crazy way to wind up, as we were both so physically and mentally active all our lives...

Me in the chemo lab
drinking up Darzalez and Benadryl

Poor Jim receiving IV anibiotics

And if all this wasn't enough, (and I have highly edited all these little stories), we've had to make the sad decision to "re-home" Domino our Rooster. If you remember from this time last year, my teacher friend incubated eggs in her classroom for a science project and we adopted the hatched chicks. One turned out to be a lovely Araucona hen, who hatched from a green egg, and now lays green eggs, (yes this is normal for the breed). The other cutie hatched out of a brown egg, was initially black and charcoal, then became black and white speckled, then he became a rooster, then he became an overprotective attack rooster, that seriously attacked us anytime we tried to enter the pen to feed, water and collect the eggs. Poor guy is only doing what nature intended, and what his raging hormones tell him to do, but he's outta control and down right dangerous now. Never thought a "hand raised" chick could turn on us like this. Guess this is a powerful example of "Nature OVER Nurture"!

 Domino the Attack Rooster on the Left, 
and sweet Butterscotch-Rusty on the Right

Here's the story: Last week I was changing the water container, and I knew Domino was eyeing me, with intention to attack, but we don't go in the pen without "protection" of the hose and a spray bottle of white vinegar! (He stays away when we face him with the sprayers, and make direct eye contact with him.) Well, as I bent over unscrewing the lid on the water container, in a flash Domino was in my face, on my body, with his feet and claws attached to both my arms, like a crazy attack rooster body hug! I managed to shake him off, and spray him off with the hose, but not before he left his marks on my arms. I was so stunned, and quite pissed off, that I yelled all kinds of obscenities at him, sprayed him more, and told him He Was Done, he's messed up a great life with 7 girlfriends and a super comfy ranch life. Sadly, he's just too darn dangerous and unpredictable to have here, plus it's taken the fun out of going into the hen house to collect the eggs and take care of the flock. You blew it Domino the Dominant Dangerous Rooster. Thankfully my awesome super supporter friend Susan found a home for him, with her neighbor. Now to just catch him safely this weekend, and off he goes to his new home... And yes, we had plenty of offers to turn him into Rooster BBQ, Chicken Soup, Chicken chow mein, etc, lol!

 He knows he's super handsome!

 Domino and some of his girls. 
Poor guy, his life is about to change and he has no idea.
I feel sad about it, but we just can't deal with his "cocky" attitude any longer

This was day 1, see the 2 claw marks?

Here's a couple days later, 
you can see the bruises!
Can't believe how fast his attack was!
And of course I worried about INFECTION
but so far, I've healed well, no infection drama!

Thank you Susan for always being so supportive
and finding crazy Domino a home!
Glad you finally made it over after, 
what, 10 years of planning?

Found these awesome fly boots for the horses
Don't you love the "CalTrans" hot orange!

And finally, with the success of the immune boosting Zarxio shots, I even got to break the Neutropenia precautions of no fresh fruits and veggies. When I went on my exciting grocery shopping adventure, I stocked up on the fresh "rainbow" I used to eat all the time. Back in the day, pre-myeloma, I'd make fresh salads daily, but not so much now with my WBCs always wavering on Neutropenic status. I even treated us to "vintage Bob's Big Boy" dressing. WhooHoo, greenery, and healthy fresh colors! Sheesh, with these semi-normal activities, I've actually felt a hint of the ol Julie. Let's just hope the success of my current triplet cocktail holds for a while, so I can "pretend" having cancer was just a mistake! 

Just a start of the "rainbow" salad

Yummy! There's cilantro, avacado, bell peppers, tomatoes, olives,
beets, Parmesan cheese, etc, hiding under that Bleu Cheese splurge there!

Thank you my loyal followers for checking in, and appreciating my crazy adventures. Your comments sure mean a lot to me, as I love knowing you've stopped by and I love hearing about your life and your journey! Hoping for little "drama" in your life, and I'll follow up with Domino's re-homing adventure, not to mention my last few days as Counselor Julie, and any interesting news that comes from my June 14 Dr appointment. 

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.