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

Saturday, August 15, 2015

Reality Check


C = CHALLENGING every day
N = NO!! Not me!!

**I wrote this “essay” a few weeks ago, and then never posted it on one of the “5’s” as July/August has been so bipolar for me with some really awful days, alternating with some ok days, which gives me false hope… then boom!, the angry volcano sabotages me again, at the most inopportune times! It’s really getting ridiculous! So anyway… here’s my recent ramblings:

Myeloma is a cancer that never ends, until the end. I know that’s a difficult concept for most people to wrap their head’s around, as most think about cancer treatments as finite, as a temporary interruption in life, then you move on, and you get back to “normal”, cancer free. Those of us battling myeloma, will battle forever. There is no “ok take some chemo, get that stem cell transplant, reach remission, and cancer’s gone”, as in gone forever. Nope, Myeloma is never gone. We treat, retreat and continue to treat, battling the battle of the unending war. We live each day wondering if the next day will be worse, or if the current treatments will stop being effective, or if we move the wrong way our bones may break, or we’ll catch a dreaded bug, virus, bacterial infection that will compromise our already compromised immune system, and well… that there could be the end of the story…
Seriously friends, I am really trying to continue to be my optimistic self. And I am really trying to maintain some semblance of “normalcy” in my life… but it’s really really challenging. After my volcanic freeway near disaster (previous post), I had a terrible week with awful debilitating back pain, pure exhaustion fatigue, a really yucky steroid crash, and yes you guessed it, lots of time spent with "Porcelain John". I really thought this could be the “beginning of the end”, and myeloma had moved into my bones. See in time, myeloma eats away at our bones and we wind up with “honeycomb” style bones, hence Multiple in the name Multiple Myeloma. Thankfully, the horrible back pain is better now, and have a skeletal scan scheduled to survey my bone status…

Times like this, I begin to question what is left of my daily quality of life. What really do I have to look forward to? Each chemo/steroid cycle is different. Side effects vary day to day, week to week, month to month. The lack of physical/biological “predictability” in my life causes me to not be able to do much at all anymore. I make plans and hope to attend. I schedule events and hope for the best. I make plans, hoping to attend, then cancel. But most of the time, reality is... plans are cancelled. And honestly, I rarely feel good enough to do much of anything anymore anyway. The optimistic helium has left my once colorful balloons. Such a sad confession for me :(
This 5 year anniversary truly is a milestone for me, and I am eternally grateful and thrilled I’ve survived Myeloma for 5.5 years! Make no mistake about my gratefulness and appreciation of my survival success! I am fascinated with my survival actually, as I read so much about myeloma and other comrades’ circumstances. But my quality of life kinda stinks most of the time. Honestly, I must be honest with my reality. That’s just who I am. “Hope” is always associated with cancer and is an over-used cancer icon. And yes I always “hope” for the best with each new day, but my daily reality slams me in the face as my daily life is so unpredictable. Not one's “normal” unpredictableness of life, but the fact that I am so controlled by my body’s physiology. Prior to my cancer diagnosis, I never really paid a ton of attention to my body. It did what it was supposed to do, and I was always focused more intellectually, then physically. As long as I could be me, and do my "me things", all was good. 
Plans, planning, and forward destinations are what most people’s lives are about. Everyone is always planning for something. It's our human nature to make plans, commit to plans, do those plans. Me, I plan and hope for the best. I plan and unplan. Plan and cancel. Fatigue and GI unrest is so unnerving. My system is so very different now. What was once taken for granted, is feared. I marvel now at the “normal” person’s life, and my own pre-myeloma life. One just does… and I just did whatever. I Planned and Did whatever, whenever, not consumed in the “What If” I now must take into consideration always.

And the Fatigue! Ugh! FATIGUE is so disabling. I have less and less energy all the time. Never quite understood "unenergized" people before, as I always pushed and pushed myself with everything I did. When I was “tired” or did too much, I still pushed forward. Action, Achievement oriented was me! I never really understood those that didn’t push forward, didn’t get up and go, didn’t get motivated and do life, do their goals, or work on their challenges. I was always activity oriented in so many ways. Laziness, "couch potato" status was never associated with me.

But cancer/chemo related fatigue is so different than lack of motivation, tiredness, laziness.  One’s body feels laden with bricks. Your mind may be alive and excited to do things, but your body is dragging a ball and chain, everywhere, all the time. I’ve always been an active, playful optimistic do-er. Mentally and physically I’ve always felt so alive! I love the outdoors and all my nature-related activities. I love interacting with interesting people and stimulating, energizing events. I love creating and making a difference.  But now, thank you to cancer and treatments, I find I have so little energy to do anything, and even pushing myself doesn’t feel good any more.

All this makes me sad for what my life has become. I had so many ideas, goals, plans, dreams for the 2nd half of my life. I’ve had such a wonderful rewarding fulfilling career as a college counselor, helping others realize their academic dreams and life goals. I know I’ve made a difference in many many lives, and I’ve accomplished a lot in my own life. I am proud of who I am, and what I have achieved. I’ve overcome other challenges in my life (perhaps I will tell that story in another post), and was looking forward to my 2nd half of life goals.  My plan was to continue to “rescue” others, but outside and beyond the college environment. I always dreamed of creating some sort of abused animal, abused kids rescue organization. Or just volunteering at someone else’s rescue. Helping animals, helping kids with their 2nd chance. Continuing to enlighten, empower, encourage, promote psychological healing, facilitate health and happiness for others, as I had always felt so blessed and fortunate in my life. I wanted to share my eternal optimism, hope, passions, enthusiasms, encouraging others that dreams really can come true if you commit and work hard. Push forward. Assess one’s self and always be aware. Move forward, Don’t Be a Victim. Always learn from the past. Ask why. Move forward positively. Grow. Look in the mirror and question. Move forward always. Create, laugh, smile, listen, heal, share, give. 

But I am realizing this will not be possible. Myeloma has stolen and rearranged my plans and dreams. Don’t be upset with me stating this reality. It’s a fact. Cancer changes everything. Mentally and Physically. Try as might, push as I used to, I am not who I was 6, 7 years ago… and I will never be that person again. I will never have the super energizer bunny endless battery I used to. No I am not depressed. No I am not despondent. No I am not whining. I’m just stating My physical facts, and facts associated with an Incurable cancer diagnosis. Fatigue and cancer/chemo side effects change a life. And I am saddled with chemo/steroid treatments for life. Myeloma is so invisible, that most who are around me physically, or see me out and about, or hear of me, think that I’m in remission, or things are ok, or will get better, or fixed, or cured. NOOOOOOOOOOOOO… that is NOT the nature of Myeloma cancer.

So where does this bring me? To the reality of my circumstances. To the reality that my life has changed and will never ever ever be close to what it was before cancer. There’s no going back to the ol Julie. This is my new normal that feels so Abnormal. But I’m a realist and a pragmatist. I like living real, so I’m telling you what’s REAL to me. I’m pooped out friends. I have so little energy. Even on steroid prop up days I don’t have crazy roid-rage energy like I’ve had previously. I’m realizing as my myeloma numbers increase, and my immune system decreases, even steroids don’t give me the accelerated prop up they used to do.
I’ve even experimented with splitting my weekly 20mg dose into 10mg, 2 days, as the crash was just so awful with the full 20mg shocking my system. Plus, splitting the dose also allows me to plan and attempt at least 2 days of possible activities outside my house. This is another example of how my body has changed and weakened. During initial treatments, I did 40mg of steroids, 4 days on, 4 days off. I must have been such a sickie, as I don’t recall feeling quite as yucky as I do now. Or I just pushed forward too much then, all the time, trying to ignore (deny?) my cancer diagnosis, and just continued (pretended) to be me. Which reminds me of a funny story back then… Well, next time… this post is getting way too long!!! 

So I'll end this post on a positive note, as I did finally make it out of the house Saturday night, after days and days of feeling yucky and spending too much time you know where... But can you believe this... just 45 minutes before we were going to leave, those stupid telltale GI rumblings began. And I had thought I was safe and in the clear. Well as my life has become, I quickly contacted  those we were going with, and let them know what happened and where I was going to be for who knows how long... and yes, when I thought the evil volcano's lava was done spewing, I downed swigs of Imodium to get me thru the event. Shheesshh this is just crazy. And could I eat at the event... NO! But I went!!!

Thanks Kristin for creating this cute collage of us :) Loove you!!!
Yes, that's an "air kiss"! No human contact for me

 And the irony of my life now, is that I am surrounded in GI maintenance! My daughter's 18yr old cat (shelter rescue kitten 1997), is now incontinent and in diapers! Poor guy, mentally he's all there, but his body is sabotaging him. (Ah, the parallels in life!) He's always been disabled, with a cat form of hindquarter-palsy, but old age has now caught up with him and navigating the litter box is too challenging for him. He tried for years, but his back legs just slip out from under him. But the last several months his slipping and sliding escalated, and it was just pee all over the "cat castle room". So I made the executive decision to try doggie diapers for him! So far it's working out well, and he seems calmer, cleaner, and he purrs up a storm when I change him. I actually had scheduled, rescheduled, and ultimately cancelled several euthanasia appointments as now he's too "ok" to make "that decision". Am I looking at my future LOL?

But this is where I draw the line for me and my future... No Diapers For Me... Nope!...No Way!!

I have blood tests this week, and my monthly check on Aug 24... so we'll see what's up. Enjoy the rest of your summer, and play and laugh, travel to beautiful places, go out and about, savor special moments, enjoy everything, eat, laugh, relax, dream, do things, and bask in the sunshine and moonlight!

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

Saturday, July 25, 2015

That Fine Line between Tragedy and Humor- (I'm always looking for More humor though!)

July 25, 2010-
5 years ago I was just days away from being released from City of Hope hospital!

By this time 5 years ago, I had survived high dose Melphalan chemo (which successfully killed the myeloma cells and almost me), celebrated the infusion of my stem cells (my life renewing "elixir"), and I was slowly recovering from the terrible awful infection complication "Staphylococcus aureus" , which invaded my system from my Hickman catheter- (ugh-you can Google that lovely infection!).
From the catheter implantation site, this yucky infection took over my body when the expected death defying neutropenic chemo crash happened. I was so sick and feverish, I barely recall the nurses and doctors rushing around scheduling and performing "emergency bedside surgery" to remove my infected Hickman catheter. But that happened in a blurry feverish fog, along with my chemo crash side effects. Eventually, the very slow build me back up recovery process finally kicked in!

Thankfully, a couple weeks later, things were beginning to improve. My new fragile (transplanted) immune system "engrafted" and was working hard to bring me back to life. At some point the hospital staff let me know I couldn't be released until I could "swallow" pills, eat/drink normally, etc, and I had to accept a Picc line to replace all the failing arm/hand IV's. The half dozen high dose antibiotic bags hanging from my large IV stand couldn't come home with me... so my ticket out of the hospital was accepting a (portable/implanted) Picc (infusion) line, so I could be cared for at home, and dosed/dispensed (at home) all these powerful antibiotics to send Staphylococcus aureus packing! I was so terrified to have another line implanted, that I resisted for a week. I was really scared I would develop another infection at the new insertion site. They sent in their expert staff to convince and reassure me- (a specialty team with high tech video equipment so I could watch the process).  When they again underscored and emphasized it was my only "ticket out of the hospital" I accepted.  And thank goodness I did, as I was running out of veins for IV's.

I was too sick to write much or take pictures back then, so I don't have a cool picture of my gross infection or IV stand with a half dozen bags of antibiotics, nutrition, hydration, etc. (I just had my little Razor phone back then), and I don't recall taking the millions of pictures back then, like we all do now with our "smart phones" lol). But here's 2 pictures of me once I was home:

Here I am with the amazing home IV infusion bottle.
I had a visiting nurse come and assist
with my Picc line, antibiotic infusions, blood tests, etc.
Check out my Aug 2010 posts for my thoughts back then :)

Here's my STERILE Picc lines.
I emphasize sterile, as I was a little too over confident with my Hickman,
thinking me,  I wouldn't ever get an infection... HA!
Notice my very thinning hair.
But still amazing I had hair during my transplant
and for another month, until I realized it was time to buzz!

I was a changed person at that time, but trying to battle back to me... My SCT complications ordeal was quite the reality check for me, as I truly believed I'd never get out of the hospital...

Well that was life then, July 2010... and here's my July 2015 update:

My Neupogen shots a few weeks ago sure did successfully prop me up, well at least for a few days (good experiment!). My WBCs increased, and for a few days my side effects lessened. I've learned, and my Drs agree, that my GI side effects are definitely correlated with my low super challenged immune system. Simply put, when my WBCs, etc are low, and my Whites in the lower 2's, with ANC near 1.0 (bordering on Neutropenic), I'm a volcanic GI mess. Yes, Imodium etc is my best friend, but sometimes "a body's just got to do what a body's got to do"... and here's a few stories about that:

Life must go on, right?! My situation ain't gonna change, and myeloma will always be a part of my life. For real- this is my life from now on,  forever. So after my awful feelings from my steroid crash days subside, and my body can't possibly poop any more (since I'm not putting much in on those days), and the achy, punched in the stomach feelings subside, along with the on-edge I'll punch YOU too feelings ;) and the horrible fatigue, dizzy, crawly skin feelings subside, and I begin to feel somewhat better... I then let myself think about life outside my bathroom.

This week was a busy one with a beloved family member's passing and memorial service for him, a few days scheduled in my office to see students, my oncology status appointment, a wedding and a wedding shower. I was on my Revlimid one week break, so I tried to do all of these events, and I tried to eat whatever appealed to me, whenever it appealed to me. Well, that didn't go so well LOL, but you know what, I'm getting so I don't care about the repercussions, I'm just going for it when I feel ok (and see what happens!) HA! But try as I do to be "normal" and eat normal, o boy, do I get ambushed and ambushed BAD, even with "pre-gaming" with "shots" of Imodium. Truly this IS that fine line between HUMOR and TRAGEDY!!!!

So we went to my beloved Uncle's service and then to his house afterwards with our extended family. Lovely people, lovely memories, reminiscing about his life and how he deeply touched all of us. So wonderful to see everyone together from across the country! It was a positive uplifting event, as he was almost 91, had lived a full life and was "ready" to be with his beloved wife, who had passed several years ago. As always, I never eat before I leave the house for events. I have learned NOT to eat at events if they are NOT a quick driving distance to my home.. because when the angry volcano erupts, it really erupts! Imodium only works for so long, and like I've said, the body eventually's gotta do what the body must do... hello ridiculous Chew and Poo lifestyle forever.  And as I have posted before (sorry- not sorry :), my unlucky poo adventures continue on, and this event was NO different.

Wonderful deli food had been ordered, and I kept having to explain to everyone why I wasn't eating (myeloma is such an "invisible" cancer). It was an opulent display of delectable foods that I hadn't indulged in in a very looooong time. So guess what I finally did? Ffff it I thought, I'm just going to eat, and hope my pal Imodium "backs me up" ... haaa that pun just happened! So I ate. And we stayed and chatted. And I watched the clock knowing I'm sometimes safe for an hour or so. I also was very aware of the fact that we were about 40+ minutes from home.. but I thought I'd be fine, (always the eternal optimist), thinking I'm nearing the end of my chemo break, and surely Revlimid would be somewhat out of my system, and I could chance it. HA! I pushed my luck and stayed too long...


Yep, I stayed too long and pushed my unlucky luck too far! Soon after we got on the freeway, I felt THOSE all too familiar GI signs. Uuuuggghhh!! I'm doomed! I blew it this time! Petal to the metal as I'm (safely flying) home on the freeway between 70-80 MPH. I'm realizing my GI situation is a looming disaster and I'm really getting desperate. Jim asked me if I'd like to stop at a restaurant to use a bathroom, and I barely breathed my reply of "NO, not possible"... " I won't even make it into the bathroom"... and just as I uttered this, WE CAME TO A FREEWAY DETOUR THAT WOULD TAKE US IN THE ABSOLUTE OPPOSITE DIRECTION OF OUR HOUSE! Seriously, I'm just "dying" at this point. I can hardly breathe, and I'm just thinking I am going to have a MAJOR GI disaster in the car. Note the "humor" and "tragedy" here!

This opposite direction detour abruptly leads us into several 5+ car pile ups, where stupid tailgaters had hit each other, and it's cars literally scattered and shattered all over! The freeway lanes we're in, are blocked and totally backed up! ... OMG, I'm just "dying". The volcano is very very angry at this point... I'm thinking how absolutley ridiculous my situation is and I'm never ever eating out ever again! Why meeeeee!!! This seriously takes my breath away and gives me anxiety just retelling the story.

FINALLY THE TRAFFIC begins to clear and I'm able to get off the South direction freeway and head North again. All the while, I'm thinking about what box, bag or "container" might be in the car that I can use as an emergency porta-pottie if I have to... FML, this can't really be happening to me. I try to have just a few hours of normalcy, and boom... my compromised immune system awakens the evil GI volcano.

I'm RACING home, now closer to 75-80 consistently, and making Jim and Alissa VERY nervous... but I had to be the driver (the super-focus helped), or I would be truly doomed. I just kept focusing on each familiar offramp, anticipating each one bringing me closer to OUR offramp, deep breathing, and clenching "those" muscles"!!!

Finally, we're off the freeway, me racing (safely lol) to our house. I make it to our driveway.. .but I have to wait a second, clench those muscles, suppress that volcano for the dash to my beloved bathroom...
Yes I made it... not a second too soon. Truly I had a GI angel that night! wow! Never Ever will I Ever put myself in that circumstance Ever Again! 

Here's a way too apropos picture of my beloved Uncle in his younger years. Can you even believe the irony of the picture my cousin posted:

Love you and miss you so much Uncle M
You were so kind, funny, caring, and so sharp witted.
Only one of you, and you are deeply treasured
and so very missed

And here we are 2009, just days before my 12.30.09
myeloma diagnosis

So after my freeway catastrophe drama, my GI system finally settled down early afternoon the next day, just in time for my monthly oncology appointment. And of course I didn't DARE eat before we left the house!

Here we go again. The news wasn't good. My myeloma numbers are up, my immune system is down. Which makes total sense. Which means the correlation between my compromised immune system and my volcanic, Chew and Poo GI, is a fact.

WBC's = 2.4 (low= why I feel yucky, fatigued, volcanic GI) 4 - 11 = normal range
M-Protein = 1.26 (up = bad) normal/remission = Zero
IgA= 1620 = (up = bad) 70 - 400 = normal range
ANC = 1.4 (low = bad) normal range= 1.8 - 7.7

And so, myeloma marches forward and I battle with focus on "quality" of life vs quantity. YES we talked about adding Velcade and/or other meds. NO I'm not brave yet to change/add new chemos. I fear worse/different, new unpredictable side effects. Yes my current side effects are awful, yucky and challenging. But they're fairly predictable and fairly manageable (lol, if I eat at home, I know to stay at home, or if I eat out local, I better never hit any traffic or accidents ever again!)

So I was a bit pissed off with this newsy reality check of my circumstances. By the time Jim and I left my appointment I was finally hungry again, so I said heck, F it, LET'S go EAT and pretend we're on a fun trip! It's a weird thing. I don't get excruciating cramps beforehand. And I can be volcanic and hungry at the same time. It just hits me FAST and I just I HAVE TO GO right then! So taking NO chances, I again pre-gamed with Imodium, and off we went to Islands restaurant close to home!

You know which one is mine :) 

You know which one is mine :)
But do you think I ate it all??
And where do you think I wound up afterwards,
a few hours later? Yep! I sure did :(
But it sure was yummy at the time, 
and I made it home just in time with NO problem! 

So that brings me to today- I attended a BEAUTIFUL wedding this evening. And I "pre-gamed" with Dex steroids. I wasn't sure after all my crazy GI emergencies this week that I would be ok there, so yes, I didn't eat all day, but brought soda crackers with me to the wedding. And yes, it was miles from my house, about a 20-30 min drive, assuming NO traffic or accidents LOL. So you know what I did... I didn't eat at first. I chatted it up with everyone at our table, watching them eat delicious food. Then I got pissed off again about my limitations. Thrilled I was able to attend for sure, thank you very much Dexamethasone steroids that allowed me to go and feel propped up... and are continuing to keep me up to 3:00am right now writing this much too long, much too detailed blog. So I decided to chance it tonight, and I ATE! Delicately though, just dry salad, no oils, mild mashed potatoes, and wonderful breads to Cork Me Up! So far so good, thank you very much steroids which I will take the 2nd half tomorrow, to attend my daughter's childhood friend's wedding shower. I FEAR THIS TIME TOMORROW, and into Monday and Tuesday as it's CRASH time... o well... go to Hell-o myeloma... I WANT TO LIVE LIFE AND PRETEND TO BE NORMAL! If just for a little bit.

Truly a magnificent facility,
beautiful bride and groom,
wonderful friends and neighbors.
So glad I went pretending to be normal,
even if just for a few hours!

The trees were stunning with the evening setting sun piercing through-
I felt so alive, peaceful and invigorated, lucky to be alive,
lucky to attend this beautiful event full of love and friendship

5 years ago today, I was still hospitalized
5 years ago today, I was still in a very small room, fighting for my life
5 years ago today, I couldn't breathe fresh air, or be surrounded in nature's beauty
5 years ago today, I couldn't even attempt to eat what I ate this month, even tho it "backfired"!
5 years ago today, I was surviving my high dose chemo and stem cell transplant
5 years ago today, I was a very different girl then today
5 years ago today, I was beaten up, but hopeful

Today, I am even more beaten up, and less hopeful
Today, tho, I was outside, among wonderful friends, breathing nature's fresh air, celebrating LIFE!

 Next month I will tell you about a possible 
bucket list plan my oncologist and I discussed,
so maybe, one day, I can do this...

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

Sunday, July 5, 2015

Happy 5th Stem Cell Transplant Birthday Anniversary to Me!

Wow! It's my 5 year Stem Cell Transplant Anniversary Today!

July 5, 2010

July 5, 2015

5 years living with cancer
5 years of chemo treatments
5 years since my hospitalization 
5 years since my successful 

High 5 to me!

July 5, 2010
around 10:55am
(by a camera shy Apheresis lab technician).
They arrive frozen, are quickly thawed and infused
via my Hickman catheter. It was actually pretty anti-climatic. 
Jim and Alissa came right after my Stemmies arrived. 
I felt ok, a little "woozy" from all the medications I was on...
Little did I know the chemo crash that was coming my way...

In SCT terms, 
my new immune system is 
5 years old today!
and bought me extra time...
I did achieve Remission status from this process,
(along with 18 months of maintenance Revlimid chemo)
and back into full time treatments I went and remain...

And look at all the other survivors
at the 2015 Transplant Celebration

Wow! Happy 5 year Anniversary to me!
Thrilled I made this far, and looking forward to 
many many many many many
more symbolic 5 anniversaries!

I see my COH/Kaiser SCT team Dr this coming Friday, so I'll be taking blood tests tomorrow (should have done it today for the symbolism of 7/5/2015), but I don't feel well ... (beginning of steroid crash days)... 
We'll see what my Dr says about my current status, numbers and treatments. I'm getting a little braver about adding another chemo to my current "cocktail"... I read a study the other day on the Myeloma Crowd website, that gave me encouragement. I should have added Velcade previously, but the Neuropathy (and other) side effects really scare and concern me, as I had a tough time with Neuropathy after my SCT from the intense Melphalan chemo.

one day....
I can do this again...

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

Thursday, July 2, 2015

5 Years... Yes 5 Years ago Today

5 years ago Today, I became a hospital inpatient.
5 years ago Today, I began part 3 of intensive chemo to save my life.
5 years ago Today, my address changed for a month.
5 years ago Today, I began the journey to hoped-for Remission.
5 years ago Today, I was brave and excited to begin my Autologous Stem Cell Transplant process.

My July 2010 home

5 years later- Today,  I am not brave, not excited about my treatments and not looking forward to what lies ahead for me (treatment side effects that is), as I am much wiser, more aware, more realistic, more scared and have been there, done that. I have HAD remission and LOST remission. I've "battled" Myeloma cancer for 5 years now. Yes, battled... it's been a battle. Me against the myeloma invasion.
Yes, I am VERY grateful for these 5 years... but honestly, cancer, cancer treatments, cancer side effects suck! Having an incurable cancer makes me a lifer at this, giving me a life-time sentence. I don't get a break, I won't ever "get back to "normal", or ever have my life back as I knew it before cancer... living with cancer and cancer treatments are my "new normal", forever and ever until lights out.

5 years ago Today, I was admitted to the hospital, and hooked up to an IV stand (that was to become my lifeline for a month- I named my IV "tower" Rex Rx). Ironically, I didn't look very sick (exclaimed the staff) at admission, and still had half my hair!
5 years ago Today, my life became limited to a hospital room, a bed, a bathroom and luckily a pretty big window with a view.
5 years ago Today my family brought me there and left me in that room... when they walked away... I cried... my life wasn't supposed to be like this. They need me, I need them, I can't be here... this must be a mistake. The seriousness of my situation hit me then. I'm a sickie and I need some pretty serious medical treatment. It's not supposed to be like this! Wait... what? Nooooooo.... it's summer... it's vacation time, I'm supposed to be having fun... outside... someone made a mistake... come back...

A room with a view. I had real estate on floor 6 then 5

I know I write this all the time... how surreal and unreal this whole cancer experience is. Truly I still cannot wrap my challenged brain (what's left of it) around the fact I was diagnosed with cancer, then intensely chemo'd for cancer, then hospitalized to further pummel cancer. I have continued on chemo, etc for 5 years now. I write about my experiences, I talk about my experiences, I live my experiences, I reflect on my experiences, but honestly, it STILL feels like an out of body experience... even when I'm feeling really sick, I still just feel really really sick, really really yucky, but I cannot wrap my head around this.

So Today, June 2, 2015 I tried to be normal, as I reminisced about where I was 5 years ago Today.
I got up... never early any more (as I'm always in the bathroom until late at night...)
I hydrated, then had a little coffee with a cinnamon stick (whoo hoo, big thrill!)
I did some animal chores around the house, logged in and helped a variety of students online, hydrated some more, talked with my (adult) kids, chatted with Jim, petted my animals, and then readied myself for work. I "recover" enough from my weekend steroid dose and crash to go into my office latter week.. well sometimes... but always later in the day... hoping the volcano has calmed... and I NEVER eat before I leave the house... NEVER!!!
Today, I tried to "act" normal... albeit my "new normal" in honor of where I was 5 years ago Today.

5 years ago Today, my life was dangling on a precipice, I was preparing for falling off a cliff I could not anticipate or know; prepping for a near death experience I knew not of...
5 years ago Today, my body was being readied for chemo cellular annihilation (hello chemical warfare Melphalan). 2 days of high-dose chemo to kill just about everything. They warn of the delayed reaction, it doesn't hit at first, or all at once. But when it does, IT DOES!
5 years later- Today, I tried to be "normal". It worked for a little bit. I had a wonderful afternoon in my office seeing students and colleagues, later even suggesting to Jim we meet for dinner (since of course I hadn't eaten all day and I actually had an appetite...  but of course, later... it "back fired" bad, really bad, really really bad.. ugh!).

For a few hours today, I felt a bit normal. When I came home I went outside, inhaling deeply the fresh moonlight, as I visited my doggies and horses and pretended to be normal, scratching their itchy spots, petting their silky summer coats, and breathing in my favorite scent of warm horse and summer hay, hearing the "hoo hoot" of a barn owl calling out in the moonlight.

My love, Boots silhouetted in the sunset and moonrise

5 years ago Today, I was inside a hospital fighting for my life.
But tonight I felt so alive! The horses and I, bathed in the warm shimmery moonlight, this giant July moon shinning like a huge flashlight from the heavens, surrounding us, embracing us with summer, with life, with hope, with peace. I breathed in deeply, exhaling cancer out and smiling contentedly, for this moment, for this gift tonight.

Hello beautiful moon!

5 years ago Today, I couldn't do that... and I cried then... because my life was forever changed
5 years ago Today, I feared what was to come. I was so scared of the unknown
5 years ago Today, I lost my freedom... for a month... for a lifetime
5 years ago Today, I couldn't breathe in the moonlight, shinning on silky manes and tails, or hear the the deep "hoo hoots" of the wild barn owls
5 years ago Today, I did not own my life... cancer and chemicals owned me... and they still own me

5 years ago Today June 2, 2010, I was admitted to City of Hope Hospital to begin the Autologous Stem Cell Transplant process, of which I really knew not what was in store for me...

Thank you sweet Kathy for sending me this unbelievably apropos picture today!
Your artwork, inner beauty and inspirational spirit inspires me!
I love our girlfrienship :)

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

Thursday, June 25, 2015

Hello again Neupogen shots... C'mon Immune system, Let's Do This!

Seconds left on this 25th of June! Meant to post sooner as I sure don't want to disappoint my "On The 5's" fans, and my commitment to posting on the 5's. I started this post days ago, but "fortunately" life got in the way and I never finished posting my details. Check back for my updates, revisions and additions.

Yay! My GI system "let" me go out to eat tonight.
Seriously, can you believe the number we got!
Oh no, now gotta "go"...
Dang you stupid compromised immune system and GI reactions :(
That event was short lived... and so are all my other eating adventures

My current stats and why I feel so yucky:

WBCs = 2.3 yikes! (4 - 11 normal range)
IgA= 1630 yikes!   (70 - 400 normal range)
M-Protein= 1.42 yikes! (zero = no cancer)
ANC = 1.0 yikes!  (1.8 - 7.7 normal range)

Me = Neutropenic = Neupogen shots this past weekend- not sure if it made much difference. I'd probably need a week's worth to make a dent.

Good bye Rev 15mg for 2 wks on, 2 wks off. That experimental regimen was short lived.
Hello back to Rev 15mg alternating with 10mg, 3 wks on, 1 wk off
Looks like full on Rev 15mg just compromises my already compromised immune system too much. Such a chemo light-weight I am. And such a "catch 22". I need the higher chemo doses to knock down myeloma, yet the higher doses knock down my immune system, not the cancer.

Ugh... awful GI side effects, thank you Rev and IgA myeloma
Ugh... killer fatigue- I never knew how exhausting being exhausted can be
Ugh... limited limited limited life... booooooo
Ugh... "cheating" on weekly Dex, vs having a life, vs yucky crash side effects of Dex, vs impact on cancer's advance, vs just take it Julie, suffer, live in the bathroom and have no life?

June 19 appointment summary:
I really should add another chemo to the cocktail soon.... I know, I know....but scared, scared

Ugh, Side effects, vs life, vs work, vs fun, vs bucket list, vs homebound, vs what to do!!!

Myeloma, you're such an invisible cancer... "but you look so good... your hair... wow!"... blah, blah, blah, thank you, but my appearance is so deceiving!
Myeloma, you stole my life. You steal my fun. You limit me. I don't like limits. I don't like you at all Myeloma. Just go away, far far away!

Some insightful, thought provoking conversations recently about other's life choices... I will summarize soon...

And do you know what I was doing exactly 5 years ago this June... wow! So interesting perusing my past posts. Can't believe I've been writing, sharing my thoughts like this for 5 years now!
Yep, my 5 year SCT anniversary is coming up July 5 !

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

Wednesday, June 10, 2015

Up Up and Away

Yikes... my medication "cheating" from last month caught up with me.

I just keep thinking that my myeloma numbers will magically change for the better and my medications will suddenly kick in and totally eliminate myeloma's power over me. Seriously, this must all be a bad dream (make that a nightmare)! As much as I have always (tried to be) a total realist, I shake my head in disbelief that my "perceived" reality is not real reality.

What am I trying to say here... I (stupidly) thought that taking only 1/2 my weekly dose of Dexamethasone and even missing, (smugly deciding not to take), several doses of Dex in May, wouldn't be a big deal at all. I stupidly thought, eehh, I'll be just fine, it won't make a difference, I'm Julie and I'm not supposed to have cancer, so whatever, it won't matter if I don't follow what I'm supposed to do. And besides.... I'M JUST SO DARN SICK OF FEELING SICK, SO TIRED OF BEING TIRED, AND SO OVER HAVING CANCER, (hhmmm... haven't I written that multiple times before!), that I just don't want to take these GI crazy making meds, so take that myeloma, I won't take my meds! DUMB!!!

Here I am, living in my fantasyland of unicorns and magical thinking

So I'll confess... I'm still in denial about having incurable cancer. It must be a mistake. Even though feeling yucky most of the time is my constant reminder, I still can't believe I have cancer and I have to take all these crazy chemo meds forever and ever and ever until lights out. I still think, oh it really won't matter if I cheat on my med schedule occasionally, because it will just magically be ok, because I really don't have cancer. And honestly, I still can't believe 5 years of treatments, including a stem cell transplant, hasn't "fixed me up", and made me "normal" again. I know... dream world...

This probably makes no sense at all, because it really doesn't make any sense at all, because me having cancer makes no sense at all...

So anyway.... this is what happened:

I was supposed to see my COH/SCT/transplant, hematologist oncologist this past Monday, but because I had so much frikn GI lava, I didn't dare get on the freeway to go downtown. Even a dose or 2 of my friend Imodium wasn't calming the raging lava. So I emailed my Dr (and kinda confessed about my cheating) and asked him to let me know the results of my recent labs. Ha! be careful what you ask for, right?!
The results actually shocked me. And good they did, cuz that was just the wake up call I needed.

M-protein up from .88 to 1.13
IgA up from 1320 to 1570
WBCs still in the middle 2's

So I'm an idiot. I got my slap around, wake up call. I have cancer. I have to take all these meds. My situation is only getting worse. I'll probably have to add to my chemo cocktail and that scares me a lot!

And these results are not even reflective of my new test cycle of 2 weeks of 15mg Rev only (no more alternating 10mg), with 2 weeks off. I see my local hematologist/oncologist on the 19th, and I'll take my labs about 5 days prior... so we'll see. But ok, I've learned. There's something about Dexamethasone that punches myeloma in the cellular gut. As much as I absolutely hate the crash, I do enjoy the short buzzing serenity Dex gives me for about 24 hrs. Time to focus on that, and just accept my relationship with "Porcelain John".

So why did I cheat in May? There were a lot of things going on. A lot of events I was supposed to attend. C'mon cancer, you're gettin in the way of my life! Trying to work, live life, be there for others, enjoy family and friends, and trying participate in activities without having to worry about surprise volcanic eruptions. That's why I cheated a bit. But you know what... I still felt sick. I still had to starve myself if I left the house. I still had a lot of shocking GI reactions. So I learned. Shut up and take my meds.

Here's what I did on a few of the days I cheated: 

Celebrated Claudia
at her beautiful memorial service 

Hung out with these Gems

Pretended to be normal at a Battle of the Bands car show

 Played in the dirt a bit

And breathed in my favorite scents

Attended my 30th commencement ceremony
celebrating students, with wonderful colleagues

 And when I couldn't leave the house,
I watched a lot of TV with my daughter and hubby
between never ending visits with "Porcelain John"

Ugh, such a small fraction of what I used to do stupid cancer...

And I am... 
And I do...
But I just can't
accept that I have cancer

Why June 10, 2015?  5+5=10 :)

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
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