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

Monday, September 1, 2014

Hello September... please be better than August!

Hi Everyone! Happy September!

Thank you for your concern when I only update once a month. I don't want this blog to bore you with too many insignificant updates, so I've focused on "less is more", posting my relevant monthly cancer stats along with some interesting personal life tidbits. Trust me :) I could post daily, weekly for sure, as so much happens in my life!

My sweet hubby Jim brought these to help me feel better!
Unfortunately and mysteriously to me, August was a month of merciless "chew and poo"! Ugh, "John" became my premier destination (sorry to those that the flinch at my too much body-biological detail reporting). I appreciate the personal details my Myeloma "blog-o-sphere" pals write in their blogs, as it is very helpful to read about other's diagnoses, treatments, medications, blood work statistics, reactions and side effects, life's challenges, etc, related to Myeloma.

Not sure why August was worse than some other months? I keep thinking about how I tolerated huge doses of Dexamethasone steroids during my initial treatment in early 2010. For 6 months I took 40mg Dex DAILY, 4 days on, 4 days off continuously!!! My dosage of Revlimid was the same too, 10mg daily, 21 days on, 7 days off. For sure I had all kinds of crazy side effects back then, but not the extreme "volcanic GI eruptions" I have now! My oncologists have confirmed that my entire physiology is changed, and my GI system is definitely different since my stem cell transplant. As I reflect back and connect the dots, I realize how different my treatment affects me now, since coming out of remission last year.

So with my new "chew and poo" lifestyle, I have become rather "home bound". Haven't been to my college office in weeks. I was very sad to miss my 32nd/29th "Fall Opening Day". Thank goodness I can still help students online. I think about how fortunate I am under these circumstances, as Jim has created such natural beauty in our backyard, and I am never without amusement and entertainment here. From all the animal residents and my human family's shenanigans, there is never a dull moment!  Click here for the "Triplets", baby sparrows update!

But however beautiful and entertaining my home is, I did suffer physiologically quite a lot this month. And basically every month from my meds, or perhaps it's side effects from IGA myeloma itself? Most of my current life is centered around trying to eat to get proper nutrients in my system to fight stupid cancer, and then wondering if it will "stick". Most of the time, no...
I like the combo versions the best! Mixed veggies and fruits
I eat what would be considered to most, really bland and boring. Baby food, Ensure, plain baked potatoes, Cream of Wheat, toast, and when I think I'm ok, I add in salad, veggies, fruits, protein, etc. I avoid acidic, spicy, onions, garlic, no greasy foods, nothing heavy, etc. There were days this month even bland saltine crackers didn't stick. But each day, regardless of the impending cramps and volcanic reactions, I would try to eat. There were days when I was in the bathroom every other hour. There were days I thought this would never end. There were days when I understood why some eventually decide the "treatment is worse than the disease". But I also know, what I am going through is not as rough as so many (or what I went through when hospitalized for a month for my stem cell transplant) ...so I carry on and hope for the best each day.

Here's my most recent statistics:

WBC's =  2.8 (4.0-11 scale) too low, thus very susceptible to everyone's cooties
ANC (Absolute Neutrophils Count) =  1.3 (1.8-7.7 x 1000/mcL) eekk! too low

M-Protein/M-Spike=   0.70 (normal = 0.0) too high
Beta Globulin Electrophoresis=  1.27 (0.65-1.10 scale) high
Gamma Globulin Electrophoresis=  0.35 (0.70-1.60 scale) low
Protein Electrophoresis= (always) Abnormal

IGA=  979  (70-400 scale) down a speck (I'm "high risk" IgA Myeloma)
IGG=  279  (700-1600 scale) too low
IGM=   17  (40-230 scale) low

And so I carry on. One day at a time, monthly blood work to monthly results. I've felt a bit better the last few days, as I'm on a little medication break. The war starts up again on Wednesday with Rev, and will slam me more after I take my Dex. But if these powerful chemicals are significantly punching Myeloma in the cellular gut, as get kicked in the GI gut, I'll never quit!

Such a spectacular sunset, last day of August
Have a wonderful September, and thanks for reading and your on going support!

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


Some interesting reading:

Cancer Cases Among 9/11 Early Responders Continue to Grow

Remembering Arnold Goodman- The myeloma community has lost a courageous and inspiring soul

Remembering Stephen Kramer- Another valued voice of the myeloma community has been lost.

Goldman Sachs Former Lead Director Dies of Multiple Myeloma

(MMRF) Saddened by Loss of Dear Friend and Board Member Edward Jay Phillips

Who knew these famous people died from Myeloma!

Multiple myeloma is incurable


Monday, August 4, 2014

Surprise, Surprise! Rescues and Results

And just like that... July is gone and August is here! Still I pause and reminisce my July 2010 life-saving, life-altering events, and marvel at where I am 4 years later.
I am still here Myeloma!

Since my last blog posting and July milestones, I've met with my oncologist/hematologist, received my monthly results, discussed my current stats and treatment plan for this month and possibly next. I've taken note that I've completed 10 months of Revlimid and Dex since coming out of remission last year, dealt with several new varieties of side effects and weird physical stuff, but over-all, my quality of life is rather tolerable... considering I have "terminal, incurable" cancer, and I'm limited by how immune compromised I am.

But the ironies of my life never cease to humor and distract me from dwelling too long on my cancer status. I've always known my tendencies towards nurturing/healing/helping others, but my continual intersections with those that need me seem to never cease. So listen up Cancer... I have NO time for YOU!!!

This is what happened in my life this past week: 

 3 little sparrows needed me

 And my life is currently consumed with 
feeding these sweet babies every 30-40 minutes
Sun up to Moon rise!

So really Myeloma, listen up: I DON'T HAVE TIME FOR YOU!

I laugh at all the things that life throws my way. Perhaps I unintentionally intentionally attract these curious adventures? Yet what I do know, is that on a small scale I have been destined to find (or they find me!) a multitude of nature's most beautiful creatures that need my rescue and rehab! My mission here on earth Myeloma, is far from over, so just move on over and out of my life, and let me get on with saving other lives (human and animal).

I was QUITE SURPRISED to learn my Myeloma numbers were back UP this month, and my immune system continues to be borderline scary compromised! Into my "bubble" I go... ugh, I am so scared about getting sick, as there are so many germs out there, just lurking to attack those of us with weak immune systems!

So here's my results in #s :
WBC's really low:  2.5 (4.0-11 scale)
ANC (Absolute Neutrophils Count): 1.8 (1.8-7.7 x 1000/mcL) eekk!

M-Protein/M-Spike up again:  0.85 (normal = 0.0)
Beta Globulin Electrophoresis:  1.46 (0.65-1.10 scale)
Gamma Globulin Electrophoresis:   0.41 (0.70-1.60 scale)

IGA:  1110 (70-400 scale) up again from last month (I'm "high risk" IgA Myeloma)
IGG:   335 (700-1600 scale)
IGM:    17 (40-230 scale)

So what's all this mean? I'll continue on with Rev 10mg + Dex 20mg for August and see what happens. My oncologist and I agreed that if the numbers continue their upward climb, we'll try Rev 15mg for September, or add/try Velcade or another treatment option. My Drs are worried about my compromised immune system as there's a delicate dance here between treatment options and my ability to tolerate it. But I'll fight the fight, whatever that fight might be, as I have too much left here to do.

These past couple of months, several amazing people I know lost their battle to various cancers, including Myeloma, and others have been newly diagnosed. The tragic passing of loved ones is a wake up call to me to continue to view everyday as a Bucket List Day, take nothing for granted, find joy, happiness, humor, purpose and fulfillment each and every day! Yes, I worry about my "situation", but I don't dwell on it. I am cautiously optimistic that I'll get many more years, but I am also realistic...

So on the days I can, when I feel well, 
I enjoy all the little adventures that intersect my life!



















Jim and I took a little road trip the other day. Not too far, not too dramatic, but we spontaneously took off on a day we both felt ok. We've decided we'll do more of these little mini one-day vacays. 
I don't venture too far from home, too far from the bathroom or risk too much contact with germy people. "Less Is More" is just fine with us.
   

Last month, I was able to celebrate
Kristin and Ashley's life successes! 
Just love these girls!
Dex really slammed me that day, 
and it was quite a funny ride!

I had so many other things I was going to write about, but my little baby birdies have totally distracted me! So if you're curious about the birdie's story, here's my other blog :) 


Links worth clicking-

Treatment options discussion group
Myeloma Beacon is a fantastic Myeloma information source!

Who reads our blogs? Great post from Pat Killingworth
Thank you to all my readers everywhere, for caring about my myeloma journey!

Tom Brokaw's commentary on MM - An American Story - 07/23/14 
Spontaneously heard this on the radio last month!


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


Saturday, July 19, 2014

Stem Cell Transplant Reflections: 4 years ago today

July represents so many things to me now as I reflect back, 4 years post Autologous Stem Cell Transplant and mega doses of multiple types of chemos. I'm ALIVE 4 1/2 years since diagnosis of deadly Myeloma! I'm pretty amazed with, and proud of my successful medical journey.

My July anniversary brings so much to mind for me. I still marvel at what I have been through and endured, and all the treatments I have survived! It all still seems like an out of body experience, or like I was a participant someone else's movie. And it's still hard to fully comprehend I have incurable cancer...

Looking back, I have zero regrets about any of my treatment choices and I am forever grateful for all the amazing care I have received through Kaiser and City of Hope. Truly, my Doctors, Nurses and staff members saved my life! Even though Myeloma returned a year ago, and I have been back on chemo and steroids ever since, I am so much healthier than I was in 2009! Sure, I have daily physical challenges, but in the BIG picture of things, cancer doesn't stand a chance with me :)  I realize I will be on chemo and tackling some sort of treatment plan for the rest of my life, and I'm ok with that... as long as it's buying many more years of life for me!

Interesting to re-read my thoughts 4 years ago, July 19, 2010, midway through my hospitalization at City of Hope. I was struggling through the middle of my battle, both physically and psychologically. Being sick and isolated in a hospital room was indeed very challenging for me. I felt broken, and wondered if I would ever be "me" again:  http://juliesmyelomamoments.blogspot.com/2010/07/good-bye-juliehello-julie.html

But I recovered and successfully reached full Remission from all that I endured!
With the help of maintenance chemo for a year and a half post transplant, Remission lasted until Summer 2013.  I've been back on chemo since mid last year, and will be for the remainder of my life. But for what all this is, and what I have been saddled to battle, I am so grateful for the quality of life I still have!

So happy 4th Stem Cell Transplant Birthday Month to me! I'm still here Myeloma, and you're NOT winning!

July 2014 is VERY different than July 2010!!!

The other day I felt well enough to groom a few of my horses
Here's my beautiful once wild Mustang
"Sissy of the Siskiyous"
She's so beautiful, so sweet, so kind, 
and has never known anything but love and kindness

 And then....
Ugh! RedBear had several "Code Blue" Colics this month!
Thought we were going to lose him...

He's been diagnosed with ulcerative colic
and is now on Ulcer Gard which is a horse version
of what I take with my Dex steroids (Omeprazole)!
Can you believe that!

Fortunately he's doing much better 
and back to itching those itchy spots
with his "wifey" Sunny

So take that Myeloma!
I'm living life as fully as I can 
on the days I can!


Saturday, July 5, 2014

4 Year Stem Cell Transplant Birthday Reflections

And so the journey of my Stem Cell Transplant to Remission began July 5, 2010

July 2=  Day 1- Hospital admission
July 3=  Day 2- Day 1 of High-dose Melphalan IV chemo begins
July 4=  Day 3- Day 2 of High-dose Melphalan IV chemo continues
July 5=  Day 4- My stem cells arrive, are infused via my Hickman catheter, and my one month journey to near death, recovery and eventual remission begins in full force
  
July 3, 2010- Melphalan chemo arrives
My nurse had to wear special protective gear
as Melphalan is so "hazardous"
wow, I am so puffed up from 6 months of high-dose
Dexamethasone steroids! ugh!

 "Happy" (not!) 4th of July to me
Actually all my nurses were the kindest, sweetest
most caring professionals ever! 
They did an awesome job taking care of us and 
cheering us up, and on

 The BMT/SCT transplant nurse team was required to
accompany their patients to the "penthouse" area of the hospital
to monitor our meds and IVs

We had a semblance of normalcy on 4th of July
with a glimpse of fireworks from afar...
So surreal! I felt like a participant in a movie
 Here I am
All hooked up to all kinds of meds
So unreal to me then
and still now

 Staff and patients alike were "shocked" that I still had hair.
In the beginning days, I still styled my hair, and put a little make up on.
That ceased as the days marched forward, and I became sicker,
neutropenic, and my Hickman line became infected and
had to be removed via emergency bed-side surgery
I was "delirious" by then...
just about a week and a half after these pictures

 Still being the silly optimist that 4th of July
only day 2 of my hospitalization
Thumbs up... all will be ok I naively thought
(Little did I know the death defying crash to come...)

July 5, 2010-  My Stem Cells arrive!!!
 About 11:00am, July 5, 2010 my "stemmies arrive
all protected, frozen but thawing, ready to be infused. 
My stem cells arrived by a special nurse from the apheresis lab

 Next, another specialized nurse setting up my IVs
monitoring me hourly, making sure all goes well

Jim and Alissa show up, just after my stem cell transplant
They either hit traffic, or my stemmies arrived early...
But they came, we laughed, we cried, we tried to be "normal" 

And I even walked them to the elevator...
which was one of my last ventures out of my room 
for a month...

After all the complications and crazy side effects, I was able to leave the hospital about 28 days after I was admitted. I cried and sobbed when I was wheeled out of my room, out of the hospital and into fresh air. I couldn't believe I was finally "free". Free to go home and try to recover my life. Truly I was grateful beyond words for all the TLC I received by every staff member at COH and Kaiser... but being confined in that room for a month nearly did me in. Honestly, there were moments where I thought I would never be released... 

As I breathed in the outside air, and briefly soaked up the blazing summer sun, I realized the Julie that walked into that hospital, was not the same Julie that was walking out...
I knew that I had battled a battle I never chose to battle, and I knew I battled deadly complications. But I also knew that I was RELEASED from from that hospital ALIVE, and I had a chance to stay alive. I was given another chance at life and living, and 4 years later here I STILL am!

Yes, Myeloma came back mid 2013, but my initial high-dose chemo treatments, my Autologous Stem Cell Transplant, along with 1.5 years maintenance chemo post transplant, gave this cowgirl additional years! I continue to battle forward now that myeloma has returned, and will battle as long as I am strong enough to do so. I have so much to live for, and so much life left within me. Yes my future scares me. Yes additional chemo scares me, but I keep on keeping on... downing my pills and meds daily! But I live today, focus on today, smile and laugh any chance I get, and I look forward to all my tomorrows!

Happy 4th "New Immune System" Birthday to me today!

Here we are way back in the day
1983/4
riding in the local 4th of July parade
I decorated us and the horses alike with red, white, blue accents
and we won the parade trophy for "Matched Pairs" !


Wednesday, July 2, 2014

4 Years Ago Today...

July 2, 2010

Four years ago, I was admitted to City of Hope Hospital for my life-saving Autologous Stem Cell Transplant

Hello to "hermetically sealed" inpatient status
Good bye to freedom for a month
Ha Ha- my thumbs up status- I'm so naive!
Poor Jim looks like the scared patient to be,
Scott and Alissa, my clueless kids
looking just as pseudo-jolly and naive as me...

Up the elevator we went
Picked out a room with a view
Glove up, mask up
IV hooked up: life and death to be delivered through mainline tubes
Hugs, kisses, teary good-byes
I'm now alone in my sterile room... 
I don't know what's next... trying to stay strong... I begin to feel scared

My life-saving journey to death's doorstep begins


Friday, June 27, 2014

Go Revlimid 10mg! You ARE My Magic Pill

Hi Everyone!
I received some VERY good news yesterday regarding my recent blood work assessing my current status on the 10mg Rev + 20mg Dex cycle!!!

Last post I lamented about Revlimid's static effect and feared ineffectiveness this go-round. But I am so happy to report that my results show my Myeloma NUMBERS ARE MOVING DOWNWARD!!! (Some CBC's and white counts not terrific, but my ol body is battling!) Yiippeee!!! Time for some "pony-pal" adventures on a "good day" !!!


IgA moved from a high of 1400 as recent as March, to a skinny 780 this month!!! That's a little LESS than 2x the high end of normal as measured by 70-400mg/dl . So thank you very much Revlimid + Dex, etc!!! I like our new relationship :)

Additionally, my M-Protein did the downward slide too!
From 0.99 in March, to 0.78 this month!

These may not be giant slides down the brewing Myeloma volcano, but hey I'll take any movement in the right direction, while still being able to maintain my "quality of life" and not be on mega-doses, or new doses with new side effects!!!

No doubt, everyday brings many physiological challenges for me, and my immune system is still really compromised, but I count my blessings and do what I can, when I can. I've learned to eat like a horse on the good days, knowing my GI issues will attack me on the other days. I've learned to change days or skip meds if I have an important event to attend, not to mention, not eat much at all, if I HAVE to be away from my bathroom!

Case in point:   I entered my cute lil Bucket list Bug in my first ever car show! I absolutely dreaded and feared the line up at 7:30am!!! So I barely ate on Saturday, and didn't eat at all on show-day-Sunday, until the afternoon, AFTER the show was over! Also I didn't take meds on Friday or Saturday so I would be ok for Sunday's show. Sssshhhhh don't tell I did that!!! But seriously, this is what I mean by QUALITY OF LIFE choices!!!

Here we are getting parked and settled in

 My darling partner in crime Kelly 
with her sweet Challenger

Huge thank you to my friends at Impression Auto Salon
for my Bug's super "spa treatment"! BabyBlue's shine is blinding!

 Wow! there were over 200 stunning cars
lining the streets in Old Town

 Jim, me and Scott

 Thank you Lauren for this adorable surprise!
This T says it all :)

And so I say good-by to June, reflecting on all my June milestones since 2010. This time 4 years ago, I had completed 6 grueling months of Rev + high dose 40mg Dex, recovered from IV Cytoxan's awful effects on me, was attempting to get used to my central line Hickman catheter, my hair was beginning to thin, I had completed 2 weeks of Neupogen injections in prep for my Auto Stem Cell Apheresis, and I was packing for my July stay at City of Hope for my Autologous Stem Cell transplant... little did I know what was ahead of me...

Cheers to Revlimid being my Elixir this month... we'll see what July brings... but until then, live life fully each day, smile, breathe, laugh, and never forget the "glass is (most) always half full" in my book, and I hope in yours too!


Thursday, June 5, 2014

So You Think You're winning Myeloma

Hello loyal followers:  eekk, I really don't want to write what I'm reporting in this post, as writing out the numbers solidifies the facts and results I didn't expect. Call me naive, too optimistic or too hopeful.... but I was sure 10mg Revlimid was my magic pill back to Remission.

Heck, Revlimid brought me from 67% cancer to 10% in 2010 during my initial treatment prior to ASCT, so I "expected" this magic elixir to fix me up again. I really thought we'd see a considerable drop in my levels in a "good direction" this time. Well, not so much... and truth be told, I'm genuinely surprised my recent blood work revealed cancer is kinda winning. I say kinda winning, as my statistics aren't drop your jaw dramatic, but they show Myeloma is as strong as the chemo battling it. Rather than pummeling it into submission, Myeloma is holding steady (and creeping up), not going away this time. And yes, to those concerned that I am too lackadaisical about my treatment plan, this news kicked my butt.

And the #s are:
WBC's really low: 2.8 (4.0-11 scale) (Revlimid does contribute to compromising the immune system)
Platelets out of normal range now: 117 (130-400 scale)
M-Protein up again: 0.90 (normal = 0.0)
Beta Globulin Electrophoresis: 1.53 (0.65-1.10 scale)
Gamma Globulin Electrophoresis:  0.40 (0.70-1.60 scale)
IGA: 1110 (70-400 scale) and I keep hearing I am "high risk" IgA Myeloma
IGG: 296 (700-1600 scale)
IGM: 16 (40-230 scale) 

So the plan is: one more month (my request) status quo of 10mg Rev + Dex.
July will probably bring Rev up to 15mg, or out with Rev and in with Velcade, or try Rev + Vel + Dex.
Ugh, I am just not brave this time around, and I just want to feel good, and get back to "normal" (HA!). I am fearful of new side effects :/

At least I made it to Alissa's SDSU graduation last month!


I was able to attend my 4th 
at City of Hope, also last month!

 Dr Kogut, me, Dr Spielberger

 Dr Chai, me, Dr Farol 

My Stemmies are stored here
just in case I go for another Autologous Stem Cell Transplant
but at this time, the "risks" are greater than the chance of Remission


So that's my June story. We'll see what happens.
But for now, I am bummed Myeloma is being so obnoxious and proving to be a much stronger match for Revlimid's chemo powers then I anticipated.



Thursday, May 29, 2014

Seriously GI system, just Calm down and let me Pretend to be Normal!

Well it's the end of May, and the last week of my 3 week 10mg Revlimid + Dex cycle.  Honestly, it's been a lousy week (month, year, etc) as my lower GI system has been rebelling. Against what, I don't know.

Actually, I have more lousy GI days then good days... but it's certainly all relative, I constantly remind myself... as in the BIG picture of cancer...  I am able to function fairly well... most days. But it seems like my GI system has ruled my life for years now. Who knew, I sure didn't know, that IGA immunoglobulins play such a critical role in the intestinal system... no wonder I always seemed to be so sensitive to foods, digestion, germs, etc, and then I get diagnosed with IGA Myeloma!


But, dang it... my plan was NOT to live life dependent upon my proximity to my bathroom!
I make plans, and cancel them
I hope to walk for a little exercise on Dex days, but I can only really walk in my own backyard, since I never know when "John" will be my best friend
I make plans, and cancel them
If I eat out... I never know if I'll have instant GI retalliation
I make plans, and cancel them
I schedule myself with students, hoping to make it into work, but then I can't... as I certainly don't want to be in my office chatting with students, then suddenly have cramps and have a "biological emergency"!
I make plans, and cancel them
My life: now centered around my GI functionality... make that, dysfunctionality! ugh!

Sorry if this is "TMI" (Too Much Information), but it's my reality this time round with Myeloma's recurrence/relapse. I had "issues" before, but I don't recall days and days and days of "instant processing" of food, like I have now.  I don't recall my 2010 chemo and meds affecting me quite like this, every week, every month. Sure when I was hospitalized for my stem cell transplant and had high dose chemo, every part of me was a wreck, including my GI system. But dang it stupid stomach... let me be!

I vacillate between, ok I just won't eat... thinking nothing in, nothing out. But that's dumb, and besides, I get weak, dizzy, head-achy, etc, so I eat, trying my normal healthy stuff, to bland, boring, plain stuff... but this week, it still went thru me. Jim even buys me delicious (lol) options of Gerber baby foods. That went thru me this week. Plain baked potatoes went thru me. Boring, no food value Saltine crackers went thru me. I tried good ol chicken-rice soup today. That went thru me. Shheesshh this has been going on since late last Sunday (and last month, and the month before, and before, etc). Dex and Rev often has the opposite effect, binding me up. So what's up GI system???

So I give up, give in, and later this afternoon, worried I had lost so many nutrients for the week and hadn't taken my Acyclovr, Mepron, etc for days, I decided to go for broke and tried a chocolate Ensure with my meds... and surprise surprise, so far so good! So hopefully I am suddenly better... gurgle gurgle, rumble rumble... only to start the med cycle over again with Dex tomorrow... then hello GI distress come Sunday, Monday on... ugh!!!

On another note, I found out today that my Myeloma neighbor learned his MM is back. He was diagnosed about 6 months after me, and thru our neighborhood grapevine we discovered each other's MM plight in 2010! Same medical team, same Kaiser facility, same meds, same Auto SCT at City of Hope, same Rev maintenance, etc. But he had remission for 3 and a half years!!! Sadly, welcome back to the treatment club buddy...

Between bathroom visitations, I rushed over and took my monthly blood tests today and have my oncology check up next week...
Let's see what story my Stats tell this month...

In the meantime.......... This makes me happy!!!


Pharrell Williams Happy ~ Happy Dogs (and a Cat) playing in Australia 

Hoping all is groovy in your lives!
Thanks for reading my rants :)

 

Saturday, May 3, 2014

Thank You Revlimid!

So I always begin my blog musings thinking and saying I will be brief, and wind up being very long winded! But this time I really will be brief, as I rattled on so much on my last blog entry!

Here's Birdie intrigued by my water/pedialyte mix,
plus she loves to peck the keyboard with me as I type this. 
So CUTE!

I received rather good news yesterday at my monthly oncology appointment. My friend Revlimid is doing it's chemical thing well, and my IgA levels decreased! Go 10mg!!! And to think I was worried going from 5mg to 10mg. Ok, I'll cut myself some slack here, as 10mg in 2010 along with 40mg Dex, (along with all my other meds, along with being newly diagnosed) was quite the challenging adventure.

Numerically, my IgA from this most recent blood work was 1150 (70-400 scale). That's down from 1400 in March/April (and better still from 1800+ Dec/Jan). Yippee!!! That still puts me around 3x the high end of normal range, but I like the downward slide! I'll continue on the 10mg (indefinitely?), and if need be, bump up to 15mg and see what happens. M-Protein = 0.81. Just go away Myeloma and leave me alone!!!

 Look who's hiding on Jim's beautiful rose!

So far, my side effects are tolerable... well kinda. I'm not a fan of being so tired and fatigued, but I'll take that over hugging "John" from hardcore IV infusions! I also have some buzzing, Neuropathy, dizziness, headaches, blurry vision and still some GI unrest, but not as bad as last month! Thankfully, me and food are a bit more friendly now.

Here's a great article where the author talks about his lowered immune system as a result of Myeloma and chemo affecting his immune system. Hello "normal" population, we are not OCD "germ-a-phobes" for fun... Viruses and Bacteria can KILL us! But that's for another tirade, another time...

Happy Birthday to the BEST hubby, supporter, caretaker, shopper, best friend, and overall loving tolerator of my situation. Scary thought who I would be, and how I would currently be... if Jim wasn't in my life!!! I tell him to stop caring so much, and take as good care of himself, as he does for me.

Our new saying:
Every day is a Bucket List day-
Heck, eat TWO desserts if you want to!

Almost looks like twin roses within the rose!
Jim has such an amazing "green thumb", 
not to mention our mutual love of nature and animals!

We are both so grateful for another year! Truly we are so fortunate to have the life we have with all the love and beauty that surrounds us! One of my greatest treatment challenges was being hospitalized in isolation for a whole month (for my stem cell transplant July 2010), as the closest I got to fresh air and nature, was the view out my window. Ugh, that was so awful for me. I cried my eyes out when I was wheeled out of the hospital, and breathed in summer...

Enough blogging, on to the birthday boy celebrations!


Friday, April 25, 2014

Potato Chips, Dark Chocolate, Spinach and future Rebellion!

Beware... Today is DEX STEROID day... aka ROID RAGE day so this post "rages" on and on and on... lol!


As I down more pills and meds today than I have fingers, I can't help thinking... and thinking and thinking (as I always do) ... WHY do I have incurable cancer? WHAT did I do to cause this? WHY me? I want the remainder of my life to be long, fun, fulfilling and silly! I'm too young to be thinking about how much time I have left, when I'm going to get all my rides in, and when my demise will actually arrive...

Over and over I have pondered the impact of stress and stressors. I do believe stress has a HUGE impact on our Bio-Physiology... changing, damaging, altering our inner chemistry and genetic profile, creating a ripe host for cellular mutations, aka stupid cancer. Most everyone I know who has been diagnosed with cancer (minus very young children), SIGNIFICANT stress has been a factor in their lives. (Those that know me well, know "the stressor" that stressed me out most of my life! But that's for an entirely different blog topic haha!)
  
And perhaps there IS an immune system connection with my life long hypothyroidism, allergies (food and environmental) and a short bout with asthma, and that crazy benign neuroma tumor (located in my lower neck/clavicle area)  I had removed back in 1998? I'll have to look for research and studies related to those. Thanks though to extensive and continuing chemo, my 2010 ASCT, allergies are mostly completely non-existent, and haven't had any asthma since our cute pet rats passed on 15+ years ago. Yeah for chemo! Guess me and chemicals do get along well!!!

So what really is this blog musing about lol... reflecting on some pretty funny conversations the other day with my hilarious, rebellious colleagues. These blunt, boisterous conversations (so raw and authentic) are so amusing and thought-provoking to me, causing me to reflect on my lifelong personality perspective of: "Of course I will be SomeOne"! I've always been so goal oriented, studious, career focused, super family devoted, have a people-pleaser personality, and not to mention, always wanting a "drama-free" zone around me! (Although there many that would take exception to this, as I am not one to keep my opinions to my self!)

I laugh, and marvel at you, my tell it as it "frikn is" colleagues (and you know who you are!), who so straight out, unabashedly share how you previously and currently live your life, so much more on the wild side then me! I reflect on my relentless quest for perfection, albeit, imperfect as perfection is. I contemplate my life's journey of personal achievement, to career success- which thank you very much Myeloma- for promptly reducing me to minimalist functionality, where I'm now just a mere fraction of a fraction, of my former self! F you Myeloma!

I laugh with them, at their spontaneous "WTF" life's philosophy, emphasizing and sprinkling their points with expletives!  I'm humored at their wild and raucous experiences that I never had... I was always so dang cautious, conscientious, and consequence oriented. No booze, No drugs, No smoking, No wild partying, etc. Responsibility my middle name ! "What the F Jules!", she said. So I tossed caution aside (whoo-hoo!) and had a bag of potato chips and chocolate with them, and suffered later lol.

Make no mistake Myeloma, I've had a wonderful life, full of joy, laughs, success and irreplaceable events and memories! Thanks to my caring parents, amazing husband, fantastic kids, extended family and great friends and colleagues, there is not too much I would change... No I'm not without flaws, and yes I've done some dumb things, but tame and sane overall. But what if I had lived a bit more recklessly??? Would that have changed my "predisposition" to Myeloma? What's up with all the drunks, druggies, chain smokers, fast food junkies that live long lives and pass on, still behaving badly? F u Myeloma... where'd my clean living get me? (ok, I have outlived my "high risk" stats, due in part to what little "good health" I had at diagnosis)


As our kids were growing up- Respect, Rules, Boundaries, being Mentally and Physically smart and making the "right" choice, was the core and foundation of our lives. As they moved into adulthood, college years, early 20's and beyond, our daily mantra was "Action... and Consequences", "look deeply before you leap", "never forget the potential outcome of your choices"!!! Well they're REALLY amazing adults now, and we have few regrets about our parenting (except we were too good, too nice lol). As they got older, we relaxed a bit, and laughed: "if you wind up in jail... make us your first phone call, but don't count on us to bail your A$$ out!" Harsh words we never had to test out, thank goodness!!! We all pondered now what, if anything, they would do differently, and they too, think about being just a bit more "badly behaved" (especially Scott the cancer survivor). Alissa hasn't stopped playing yet! I was always so entertained when their friends would share their wild experiences with me: me thinking, wow, how stupid of you... but oh so fun your adventures are!!! Think Havasu... and you know the stories!



So this brings me to being a tad pissed off for most always doing the right thing and still being diagnosed with deadly incurable Myeloma !
I basically lived and ate really healthy
Tried to get a section of the entire food pyramid in, almost every other day
Always trying to be a "healthy anorexic" (eating well and watching my weight) 
I didn't drink alcohol, ever do drugs, or smoke
I drank herb tea, half-caff coffee, watered down juices, and never cared for soda
Few fatty foods and of course, no fast food/junk food, very little animal products
Earlier on I didn't drink a ton of water though... maybe that's it!!! 
Perhaps it was my busy, busy, busy life with never enough sleep, committing to too much, being the ever present, "mom-counselor" to all...
Perhaps my "mid-life" braces, all those dental xrays, and not really eating right for those years, contributed to hosting myeloma?... as I found it challenging to eat with a mouthfull of irregular, sharp metal clanking together. To be honest, looking back at the years preceding my diagnosis, I really didn't eat as well as I imagined I did... dumb me! - why didn't I know of Ensure and nutritional drinks then!!!
Perhaps it was also the years of stress (good stress, bad stress, all kinds of keep it together stress), but lots of stress none the less, that eventually flicked the cancer switch?

Who the heck knows! ... I'll never know why Myeloma chose me, or why I created a body chemistry that invited Myeloma in, and gave Myeloma the welcome mat into my life
Perhaps I should have indulged more, not tried to be "so good" all the time
Perhaps I should have cared less about all the things I cared so much about
Perhaps my quest for the best, should have been more of the "less is more" philosophy I so often espoused

Oh well....
Cheers to a banana, cream of broccoli soup, sauteed fresh spinach for lunch today... and like a good girl, I took my morning and evening meds with a delicious vanilla Ensure.
I made us Breakfast for Dinner tonight, after I did 6500+ steps (thank you FitBit) around the barn to burn off some Roid Rage Energy. I made Jim a Hawaiian special: Spam and scrambled eggs, sauteed with spinach and hot sauce. Me, a tamer version minus the Spam, but with added spinach, avocado, and yes... hot sauce! Dex steroids make me (temporarily) "crave" spicy!

I splurged on dark chocolate today, petted my horses and scooped some poop. I breathed in deeply, including dusty manure residue, and inhaled sweet horse breath kisses. Take that stupid Myeloma!


So what's my point...
I think I'll take a few "wild detours" on my next journey and cuss a bit more too! And wear cowgirl boots more often! And take more rides on the "no stress express"!

PS- Revlimid 10mg is going well. No allergic reax so far. Tired, achy, etc, but okie dokie... blood tests and monthly oncology appointment next week. Not sure what I was worried about lol! Bring on the 15mg if necessary.
See you in May my loyal listeners, lurkers, and followers  :)

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 Alissa 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 team, Dr Lee and Nurse Jalee at Kaiser PC, and Dr Spielberger and Dr Kogut at Sunset Kaiser/City of Hope hospital.
I began to formulate a new reality and accept my "New Normal".
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 remarkably 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!

And now... the 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

June 2010:
High dose IV Cytoxan
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
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 the Heck is Multiple Myeloma?!

Multiple myeloma is a cancer of your plasma cells, a type of white blood cell present in your bone marrow. Plasma cells normally make proteins called antibodies to help you fight infections.
In multiple myeloma, a group of abnormal plasma cells (myeloma cells) multiplies, raising the number of plasma cells to a higher than normal level. Since these cells normally make proteins, the level of abnormal proteins in your blood also may go up. Health problems caused by multiple myeloma can affect your bones, immune system, kidneys and red blood cell count. Although the exact cause isn't known, doctors do know that multiple myeloma begins with one abnormal plasma cell in your bone marrow — the soft, blood-producing tissue that fills in the center of most of your bones. This abnormal cell then starts to multiply. Because abnormal cells don't mature and then die as normal cells do, they accumulate, eventually overwhelming the production of healthy cells. In healthy bone marrow, less than 5 percent of the cells are plasma cells. But in people with multiple myeloma, more than 10 percent of the cells may be plasma cells. Because myeloma cells may circulate in low numbers in your blood, they can populate bone marrow in other parts of your body, even far from where they began. That's why the disease is called multiple myeloma. Uncontrolled plasma cell growth can damage bones and surrounding tissue. It can also interfere with your immune system's ability to fight infections by inhibiting your body's production of normal antibodies. Researchers are studying the DNA of plasma cells to try to understand what changes occur that cause these cells to become cancer cells. Though they haven't yet discovered the cause of these changes, they have found that almost all people with multiple myeloma have genetic abnormalities in their plasma cells that probably contributed to the cancer. For example, many myeloma cells are missing all or part of one chromosome — chromosome 13. Cells with a missing or defective chromosome 13 tend to be more aggressive and harder to treat than are cells with a normal chromosome 13. ~ From the Mayo Clinic