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

Monday, July 17, 2017

Darza, Pom, Dex... I loooove You!

Hello 7.17.17
Great News :))
You won't believe my IgA stats!

And to think, where I was 7 years ago today...
Here's a walk down memory lane... I wasn't feeling too chipper 7 years ago TODAY, trying to recover from my stem cell transplant and my septic infected Hickman catheter site... 

(Be right back ... GI sabotage lol...)

Hello Everyone-
As always, so much happens between posts, but I'll let the pictures do the talking this time. (You can click on the screen shots for a larger view)

 Wow! Look how low my IgA is!
Go Darzalex, Pomalyst, Dex steroids

I know it's hard for some people to "see" me
and hear me speak of how "serious" my situation is
But Numbers Don't Lie, right!
Bad, Worse, Bad, Better, Better, Wow now :))

Even my IgG is rebounding
After my SCT, my IgG and IgM were always super low...
but a "strange thing" has happened with Darzalez.
I recall reading an about an IgG component...
I'll find the article link...

Look how Darza has affected my myeloma type
I used to only be IgA
Now I see an IgG component
 IgA only ^

And look below
I've joined another "sorority"

 I'll be asking my Dr about this tomorrow at my appointment
And for any of you myeloma "experts" reading this, 
please comment and let me know your thoughts...

Now I remember where I read about
"As Darzalex is an IgG monoclonal antibody, it can be detected on tests used for the clinical monitoring of M protein and may impact the determination of complete response and of disease progression in some patients with IgG myeloma" 

Yippee!! M Protein is still
reads as "Abnormal", 
but not a measurable numerical value!
A few months ago, it was over 3.4

But... after 21 days of Pomalyst
my WBCs plummet, I become Neutropenic,
so it's Zarxio to the rescue!
I'm such a pro now at grabbing a bit of belly chub
and in goes the shots with no problem

So today was my hubby Jim's all day adventure with his doctor's regarding his previous blood clots in his legs issue. Been a tough battle for him, as his veins have died a slow death from years of damage, and he has terrible swelling, DVT, and now "venous ulcers" on one leg from the swelling, and blood flow issues. So incredibly painful for him, and he's used to being so active and on his feet all the time, and that only exacerbates it. Getting old just stinks! So we spent the early day getting a Vascular Ultrasound and seeing a Vascular Surgeon. Bottom line for poor Jim: compression stockings, elevate the leg, and the home health care nurse comes 2 times a week to wrap the wound. It's like an "Assisted Living Facility" around here, but we both stuff our symptoms and get outside and take care of all the creatures we are responsible for, even when we don't feel well. I wonder what a "cement, suburban" life would be like lol... just being responsible for ourselves... oh well, we'll make it work, as all our animals are a part of our life for their entire life. 

After leaving all the appointments today, we were hungry, so knowing I would be at the Chem Lab all day tomorrow, we brought home delish deli food. Not sure what happened to me, but for the first time in a very long time, my GI was not happy, and I spent some time in the bathroom late today, tonight, reminiscent of the Revlimid "volcanic" days! (Remember those stories? And this one?) Still have an unsettled stomach, but we'll see what the rest of the night brings. Hopefully nothing, so I can get it together early tomorrow morning, take my 20mg steroids (as Darza pre meds), get to the lab to take my blood tests, in time for my Dr appointment, then all day Darza IV infusion. 

Good news is, I felt pretty good this month. Must be those awesome IgA stats! Just processing all the changes in my life (retirement pushed some buttons), accepting where Jim and I are health-wise and our lack of the "golden years options". Sshheessh, and I'm so "young" to be dealing with all this.... Anyway, my goals are to begin going through all my "stuff" (still haven't fully unloaded my office boxes yet), meet up with friends when I feel ok, and take a few local "day trips" when we are feeling ok. Always so much to process. Amazing how life continually throws us curves and forks in the road. My goal is simplicity, less is more, and most important, feeling ok, and just being happy every day. I am thrilled beyond thrilled Darza Pom Dex is currently my "magic elixir", and I hope beyond hope this triplet cocktail can outsmart myeloma for many many months to come. But I am a realist, and live month to month, blood test to blood test, and know myeloma is super stealth, and treatment changes are inevitable.  

I didn't even tell you the funny story about me trying to buzz my little doggie, and learned being a dog groomer is really hard, skilled work, that I absolutely do not possess! And Domino the attack rooster still trying to attack me thru the fence, but I outsmart him by going out to collect the eggs at night, after he and the girls are roosting for the night, as I dodge the rat-family... And did I mention, I had a nail in my tire, ...  so many more life adventures. But I have a life, and for that, so incredibly grateful!

My loyal, dear friend Kathy and I finally met up for a Frappucino!
I cancel on her, more than I see her-
And today, while waiting to see Jim's Vascular surgeon, I saw Karen, our amazing Chemo Lab volunteer. So nice to get out and about once in a while, and feel "normal" ha ha! 

Thanks for checking in and following my silly story. Hoping your life is filled with rewarding adventures, good health (or livable health), and all that makes you happy and fulfilled! Cheers to 7.17.17. 

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

Friday, July 7, 2017

New Chapter, New Identity... Same Life, Same Challenges


Surprise! Did you see I posted a few days ago?
Be sure to scroll down to my other posts, as I reflected on my 7 year Stem Cell Transplant anniversary, on 2 very symbolic days for me:
July 2, I was admitted to City of Hope to begin my first (and only) Stem Cell Transplant
July 5, the day my own stemmies were infused back to me, restarting and regenerating my chemo and myeloma ravaged body.

Yes, 7 years of myeloma invasion this 2017. Happy 7 year SCT anniversary-birthday to me. On one hand I marvel I am still here. On the other, "of course I am", I whisper to myself. I must be. I have to be.

Moving forward, I had my 14th Darzalex infusion this past Monday, and I'm doing ok. I tend to "crash" on day 3, 4, 5, 6. Combo crash from Dex steroids and Darza, while the Pomalyst side effects carry on for the entire month lol. It starts with extreme fatigue, feeling bloated from Dex (I think), then light headaches, dizziness and achy skin. I stay close to home on these days, as I never know what my GI side effects might be, but fortunately, nothing like the extreme surprise volcanic reactions I had from Revlimid, and infrequently, Kyprolis. It's interesting the "bargaining" we do regarding side effects. There are days I wish I could "go", then other days, wishing I would stop "going". Days where I am so achy, I don't know if it's side effects, or I'm getting a bug. Not sure which is worse. Then the numbness and tingling from the Neuropathy. And the fatigue, the absolute lack of "helium", is just so debilitating.

I'll take my myeloma marker labs next week, and know my status on Tues July 18, which is also my 15th Darza infusion. Will be interesting to see my numbers, as my infusion schedule is off several days, due to all my retirement events end of June. I do worry with the every other week Darza protocol, as I am skeptical about the monthly protocol coming my way in the future. But the years of research trials and studies determined the infusion schedule, so we'll see how it affects me personally. I just wish for treatment consistency... but that's not myeloma's reality. Myeloma's reality is continual treatments, successes, refractory, new treatments, refractory, repeat, repeat, repeat...

And so... I've been "retired" for a week now... certainly not the "retirement" I thought my retirement would be. I've let go of a lot of plans and dreams... I accept. It is what it is. Always reminding myself: "you can't control the things you can't control Julie"... I remain so grateful for all the good things in my life, past and present, and for this 7 year anniversary that almost wasn't... 

Maybe one day...

Maybe one day...

 Thanks for reading and caring. Hoping your summer is full of fun and happy times! 

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

Wednesday, July 5, 2017

7th SCT Anniversary! Thank You My Little 2010 Stemmies


Wow, can it be? Yes, 7 years ago today I received my own Stem Cells back, in hopes of revitalizing and regenerating my system after months of intensive chemotherapy, with the hope of finally pummeling myeloma outta my universe.

It was mid morning July 5, 2010, with not much fanfare or dramatics, my nurses came in to my hospital room, checked my vitals, checked my IV's, hung a few new bags of "magic potions", (probably hydration, anti nausea meds, etc, can't recall...), and let me know my Stem Cells would be arriving at any time. I was still in a daze about this whole myeloma cancer situation, not to mention being a hospital inpatient, that I just "went along for the ride", nodding my head and agreeing to whatever the professionals said would be the next event. I always felt like I was an imposter, or my diagnosis was a mistake, or I was participating in some sort of "professional in-service" workshop, as it was, and still is, so difficult for me to fully relate to, and accept my illness status.

But catheter lines connected to my main arteries, tubes coming out of my chest, IV bags galore infused into my body 24/7, nurses and doctors rushing in and out of my IN-patient hospital room, all confirmed my reality: That I have a very serious illness called cancer, specifically myeloma, I'm really sick, I'll be sick forever, but this Stem Cell Transplant infusion process will buy me time. How much time, I didn't know back then. No one knew. No one knows now. But here I am, 7 years later! Treatment seems to be an oxymoron: "Precision Guessing" lol.

And the door opens. A quiet, reserved young lady wheels in an ice chest, says hello and that she is here to deliver my Stem Cells!

Didn't seem like a big deal to me. No bells and whistles. No band playing. No wild partying or revelry. Hubby Jim and Daughter Alissa were on their way, but it was just me, the Cyrogenic Lab Tech delivery lady and my Nurse Susan. Back then I just had my little "Razor" flip phone for a camera, and I had only taken a few pictures up to that point. I wasn't as connected on social media or this blog that long, so I wasn't taking a zillion pictures or selfies back then. But I stopped her and said, "wait, please let me get a picture of you holding my stemmies"! She obliged, but shyly. Click, there they were. Saved forever in just one blurry picture. Nurse Susan came and hung the bag, connecting my 5 million stemmies to my Hickman Catheter, and off my stemmies flowed, infused back into by body. No pain, no drama, so very undramatic. Me of course thinking, "ok, so what's the big deal to a Stem Cell Transplant"? "This is so very anticlimactic", I thought. But I soon came to find out exactly WHAT the BIG deal was to this whole process. It's not the actual stem cell INFUSION process itself, it's what the 2 days (prior) of HIGH DOSE MELPHALAN CHEMO, does to one's body. THAT is THE BIG DEAL.

 Fortunately, Jim and Alissa made in, 
just as my stemmies were almost all infused.

And so the days passed. First few days after infusion I felt ok. Then slowly not ok. I was moved from the 6th floor to the 5th floor. I remember so many medical professionals coming in to see me. I called it the "Parade of Professionals". Nurses, Doctors, Social Services, Occupational Therapists, Exercise Therapists, LVNs, RNs, Dieticians, cleaning staff, on and on and on. Seriously, never a dull moment. I was so exhausted. My phone would ring. I had so little energy to answer and chat. I got so I couldn't talk. Too physically weak. Too emotionally drained and affected. Everything became an effort. Getting to my little bathroom, just steps away from my bed, like a marathon challenge. I tried to hydrate and eat a bit, but I was so cautious, as I didn't want to be sick. I began keeping the TV on 24/7. I needed "noise", needed distraction from my own thoughts and feelings. I was going down hill. My immune system was crashing. I felt awful. I developed a fever. My Hickman Catheter became infected, septic. Doctors and Nurses determined it was so infected it had to be removed. And fast. So fast, they sent a Surgeon in to my room to perform "bedside surgery". I remember "seeing the light"... thinking this is it... I'm outta here... I'm going... but I woke up hours later, no catheter, many worried faces, multiple bags of IV antibiotics flowing, into an IV now in my arm. Catheter gone. I then understood what the stem cell transplant BIG DEAL was. It's the chemo CRASH! My immune system was now Neutropenic. Nadir had happened. Melphalan had killed most everything. Good and Bad. My body now has to rebuild me back to health... if I am going to make it... The plan: my stem cells to the rescue. Regenerate my immune system, give me strength, give me power to fight, give me my life back. 

 My view all of July 2010

Although my stay was difficult, 
I had the best of care, with the best professionals
and I will always be indebted to the COH SCT staff!

Yes, my whole month at City of Hope Hospital was one of my most challenging events of my life. I think more emotionally, than physically. Slowly my body healed. Engraftment happened. Slowly my immune system rallied and built back up. Slowly I learned patience. Slowly I learned I was not in control any more. Slowly I began to accept I had terminal cancer, and I would never ever be who I was, before diagnosis. Slowly my body healed. But I was told, my ticket out of the hospital was accepting a new port for my IV meds. See, after my Hickman "blew up" due to the extreme infection (probably due in part to me being allergic to the bandages, and not keeping it properly covered initially), I was terrified to accept another implanted port. But my nurses and doctors let me know, no port, no going home. My ticket to freedom was accepting a Picc line, port-a-cath, a little port installed in my upper arm, to allow home health care nurses to come and help me administer antibiotics, for weeks, months? I accepted. I accepted the port on July 26, 2010.

 Here I was, back then, with my super cool
home IV antibiotic "bag in a bottle" infusion apparatus 

 Late Wednesday, July 28th, I was released from the hospital, and my family brought me home. I cried the whole way home. I cried from relief. I cried from pure exhaustion. I cried because I never thought I would get out of the hospital alive. I cried because I felt the sun in my face, and the wind in what little hair I had left. I cried because I had held in so many emotions for so long, and they just poured out. I cried because I knew there was now hope that I could be "Julie" again. Just Julie. Not Julie the sick hospital inpatient, battling for her life, but Julie, breathing in life, exhaling illness and inhaling sunshine, nature, scented roses and whispering pine trees, horses swishing tails on moonlit nights, and I could once again, laugh with my family, friends and colleagues. 

 And here I am, 7 years later, so lucky to be here
doing all the little things I never thought I'd be able to do,
back during those long, painful days and nights in the hospital...
7 years later... wow! 
Happy 7th SCT to me :))

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


Sunday, July 2, 2017

Admission Day: 7 Years Ago Today


7 years ago today, 7.2.2010, I was admitted to City of Hope hospital to begin my first (and only) Stem Cell Transplant process. Oh was I naive and full of "Whaaateverrrr"..., "I'll be just fine, and do just fine, and this isn't a big deal" attitude... Ha! did I learn differently throughout the 4 weeks I was there! Here's a quick pictorial of my first days as an inpatient:

Hello City of Hope hospital:
My home all of July 2010
I started out on the 6th floor, then was moved to the 5th floor
when my Hickman Catheter became really infected and septic, 
But that's a story itself!

July 2, 2010
Here we are are in "Admitting", looking like we're off on a cruise,
except for hubby Jim, he was pretty traumatized with my situation

July 3, 2010
Hello killer Melphalan chemo, Day #1
Let the 2nd phase pummeling of myeloma begin,
prior to infusion of my stemmies

July 4th, 2010
My sweet nurses escorting me to the Fireworks viewing area.
Still clueless me, always having an "out of body experience", 
I remember feeling so out of place, 
feeling like I was impersonating a patient. 
I still had fluffy hair and make up on lol

July 4th, 2010
Melphalan Day #2
Fireworks outside, and
"fireworks" to come on my insides...
but little did I know that at this time!

My first few days of hospitalization were rather uneventful. But that of course, was before the "expected" "Neutropenic, Nadir crash". So weird being an inpatient, as I just couldn't grasp how "sick" I really was, and what Myeloma had done to me. My 5 months of Revlimid and Dexamethasone, and one day of IV Cytoxan had brought my cancer involvement down from 67% to 10% and the plan was for Melphalan to finish the job, with my own stem cells eventually regenerating my system. Sure I had plenty of crazy side effects during my initial treatment, but my life was still somewhat "normal"... Oh what a humbling adventure my hospital stay became, and I sure had my "reality adjustment" in the days, weeks to come..  I'll tell you more on July 5th, my 7th SCT anniversary...

True story... I really did have many fears, 
but I always focused on the positive,
hoped for the best,
took one day at a time,
and was very careful to follow exactly 
what my Drs and Nurses told me to do. 
I just can't believe it's been 7 years...
and I can't believe everything I have been through
in the last 7 years... 
But here I am, so lucky, so grateful, to still be telling my story!

To Be Continued :))

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

Tuesday, June 27, 2017

Can All This Be for Real?


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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.81 Aspirin to prevent DVT, Revlimid complications
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.