Sugar and Spice and Everything Nice

As it turns out, I'm not as interesting or funny in person as in text.

(Perhaps I'm neither of these things in text either.)

In the past week, I eagerly ran around blabbing how I was going to create a video post for my next blog entry.  I was super excited to catch up with every tween on the planet who regularly posts on YouTube.  I geeked out over Spring Break, went to the Apple store, and learned how to make movies.  But, my recording was so lame even I was bored with myself.

Preparing to record I was so bonkers I knocked over my favorite plant, killing yet another jade tree, anxiety-ate my weight in granola, sweated for the first time in ages (I'm always freezing) and adjusted everything 4 zillion times.  All so I could sit alone in my home and talk to my computer.  All of which could and would eventually be edited.  I'm such a weirdo.  Alright then, Universe, I will write.... not utilize my newly-acquired iMovie skills.  The Universe (or God or Allah or Buddha, whatever you prefer) has been telling me lots as of late, most of which you'll read below.  All of it was recorded but I'll spare you thirty minutes of yawning through my lame vid.  I plan to edit and spruce up my recording so it may appear here someday.  But not yet (or ever).

Before I begin all the granola-eating hippy talk, I'll give you a quick run down about what is happening with the little fellas residing in my liver.  Half a dozen tumors remain.  I'm receiving monthly injections of Octreotide aka Sandostatin.  This lovely shot is administered at the hospital via large needle to my back side.  I treat myself to vegan ice cream in a gluten free cone at Sweet Action Ice Cream Shop - my FAVE- after these special hospital visits.  If this medication does as it's supposed to, the tumors will not grow any further.  The chip on my shoulder comes from the fact it doesn't shrink or eliminate cancer, just keeps it from growing.  Personally, I'm done with cancer, ready for it to be gone, brush off my shoulder and be on my merry way.  

I will have an MRI in May to compare with the MRI from February taken at my 6 week post-surgery check up.  Tumor growth will be monitored every two months.  If there isn't growth or change, we stick with the injections, pun intended (wink).  If there is change or growth in the tumors, the plan will change at that time.

The good news is I'm feeling pretty great.  I have an addiction and it's called YOGA.  For a few weeks now, I've been able to regularly attend yoga classes of all kinds and my body loves it.  Almost as equally exciting, I went for a walk in the park recently and decided to try running.  Ready for this?  I was actually able to jog for about 3 minutes!  Yay!  Me!  I'm continuing acupuncture, of course, my other drug of choice.  In fact, as I sit here composing this non-video post, I just ate an amazing organic, gluten-free sandwich and drank a veggie juice at another of my FAVE places, Parsley, following acupuncture which was preceded by early morning yoga.  Ahhh, yeah.

Just a year ago I knew very little about what I was putting in my body.  A lot can change in a short amount of time.  Now, people are coming to me for advice about being vegetarian, gluten-free, and what herbal supplements to use.  Sadly, I'm grossly under-qualified to answer anyone's questions about diet and nutrition... but I can tell you what I'm up to.  This is my blog after all (wink).  Prepare yourself for an adventure!  You're about to go on a journey through the time continuum of my eating habits.  It's like Space Mountain at Disney World, except not fun or exciting.  However, you could wear Mickey ears while reading this and sit in the sauna to simulate Florida weather.

Juicing, smoothies, supplements, and changes in my diet are ways for me to take care of my body and ailments as naturally as possible.  Western doctors were making it rain pills.  I went to the doctor for help with digestion, but that Rx caused headaches, so I was given a prescription for headaches... which came with another set of side effects for which I received more pills.... and so on and so forth....  No thank you.  There is a time and place for pills and I'm not Rx free by any means.  I'm merely looking for balance.

Warning:  hippy talk about to commence, if you're interested, please continue reading.  If not, check ya later, man.  Peace and love.

I eat organically as much as possible.  Someday I'll grow my own food but until then, I'm at the mercy of Whole Foods.  I think about the bombardment of chemicals my body endured for nearly 30 years and it's a wonder I've made it this long.  (Actually, it's a wonder I've made it this long not just because of how I used to eat.)  Processed foods are not good.  I avoid them as much as possible.  Our bodies are not designed to digest them.  I think I only ate processed foods during my college years.... If you've never had Amigo's Mexi-fries at 2 am, you haven't lived.  In the years that followed, we all heard the negative effects of processed foods and I cut down some.  Now, I've almost completely cut out all processed foods.  Yay!  Me!  I'm not going to beat myself up when I want some fries, but I certainly won't be pulling into a McDonald's drive-thru to get them.

I've been vegetarian for years but moved further towards vegan on the spectrum, giving up diary and eggs.  Milk has been out of my life for many years, it's weird being a member of the only species to drink the milk of another species.  Looking to become vegetarian or vegan?  I'd recommend reading The China Study.  It's a great guide to all things nutrition and gives lots of info about plant-based diets (such as mine when I'm not at oyster happy hour.)  I can't help but have sea food from time to time.  It's so delicious.  But it also freaks me out sometimes.  Again, I'm weird.

I'm fairly new to juicing and it pretty much rocks my world.  Juicing is exactly what it sounds like:  you take a bunch of steroids.  Oh wait, that's the OTHER kind of juicing.  Right right, I'm not Lance Armstrong.  I was confused for a second.  Besides, my wrist bands are WAY cooler.  (Love you, cuz!)  I was turned on to juicing by Shelley and Lyndsey.  Juicing is taking the fruits and veggies you love and making them into juice (thank you Captain Obvious).  This is an excellent way to get nutrition without having to Bugs Bunny-munch carrots all day.  My favorite recipe right now is celery, apples, ginger, and lemon.  My hands and feet were swelling after surgery so I looked into it;  celery is a natural way to reduce swelling so there are stringy, green bits a-flying when my juicer is powered up.  In the beginning I was a wild woman juicing kale, cucumber, celery, apple, carrot, lemon, and ginger.  I've toned it down a little.  Since I'm notoriously late everywhere I go, I juice a ton of fruit/veggies in the beginning of the week and put it in a large pitcher.  Throughout the week I fill up a water bottle as I'm sprinting out the door on my way to work and alakzam! I have nutrition for my day.

Smoothies started when Betsy bought me a Nutribullet.  Best.  Present.  Ever.  In a (brief) moment of genius, I realized I should use the pulp from my juicing endeavors in my smoothies.  My current smoothie recipe includes apple and celery/lemon/ginger pulp, frozen berries, maca powder (this is the ginseng of South America), goji berries, almonds, pumpkin seeds, and wheatgrass.  After blending, I usually add some vanilla flaxseed milk for flavor, B-12 and astragalus for its supreme immune bolstering plus so much more.  All organic, of course.

Short and simple:  squeeze a lemon in your water.  Switch to green tea instead of coffee.  Green tea has about one fourth of the caffeine of coffee so you still get a little kick but it won't dehydrate you like coffee does.  Plus, it's badass.

I'm sure you've picked up on my gluten-free vibe by now, even though I'm so subtle about it.  I have what's known in the GF World as an "intolerance."  I'm not full on Celiac.  I can eat foods from kitchens with cross-contamination and a little bit of gluten usually doesn't bother me greatly.  If I were to eat, say, a piece of bread though, it's a different story.  The misery that ensues is pretty intense.  If you've never experienced "basketball tummy" you're a fortunate human being.  It's exactly what it sounds like:  you've swallowed a basketball which gives you the look of being 6 months pregnant and sticks around for at least 48 hours.  During these lovely 48 hours, you're not hungry at all.... but your brain tells you to eat because that's what humans do to remain living.  So, you make food or order dinner and try a bite.... only to become completely satiated after two forkfulls.  If I were a spy captured by the Russians, this is how they'd get me to break.

Gluten-free can be tricksey.  When I first started eating this way, I assumed I was doomed to the life of a bunny as salad seemed like my only option.  This is not true.  I'm fortunate to live in an urban setting where I have many options for grocery shopping and restaurants.  If you do not have this luxury, good luck to you.  Just kidding!  My experience is mostly trial and error.  I've done some research and found what works for me.  I joke about being a "granola-eating hippy," but seriously, granola is delicious.  I love granola.  Especially Boulder Granola but also Kind Granola, which is more wildly sold.  Eat it as a snack on the go or pour some almond or flaxseed milk over it for a yummy breakfast/lunch/dinner.  Cereal for dinner is très chic.  You can use rice flour for baking anything your heart desires such as bread or cupcakes... ummmm... cupcakes.  Quinoa and couscous are gluten free.  Both can be made with some veggies for a delicious meal or side dish.  I'm spoiled because my mama makes me bowls of quinoa with veggies and all I have to do is heat them up.  I'd recommend reading Wheat Belly for actual expert insight on this topic.

Make your own protein bars, or get my dad to make them!  He's a pro!  (He also makes homemade puppy treats so hit him up for some of those, too.  Fido will thank you.)  Homemade protein bar recipe musts-haves:  oats (gluten-free if you'd like), peanut butter, and almonds or any kind of nut (sometimes you feel like a nut, sometimes you don't).  Add a natural sweetener like maple syrup or honey - if it's from the region where you live, it can help you build an immunity to local pollens which helps with allergies.  Other ingredients to toss in:  chia seeds for fiber, flax seeds for Omegas, maca powder for energy and balance, coconut oil for thousands of reasons, dark chocolate just because it's amazing and also these reasons.  The world is your oyster here (be careful if you see me coming at you with some horseradish), add whatever you'd like.  Gluten-free?  Yes.  Organic?  Yes.  Chocolatey?  Yes.  Fruity?  Yes.

As previously stated, I'm not an expert.  I've been listening to my body and obeying it's orders.  The first time in my life I'm obeyed orders... and they were given by me.  Go figure.

Take a moment.  Listen to your body.  What is it telling you?

Alligator Food

Surgery is complete and I live to tell the tale.

And the tale goes as thus:

Surgery is bonkers.  I think we'll call this a one and done gig.  In my true air-headed fashion, I didn't give my surgery much thought.  The momentum and excitement Mayo's treatment options offered, namely this surgery, grasped  ahold of my energy.  I didn't stop to consider where they'd cut me open, I didn't think about what would happen while they were in there, I didn't take into account how other parts of my body would be effected, and there were very little thoughts of recovery..... the list goes on.  Following surgery, I heard this phrase from my surgeons about 73 times, "You've had a major surgery."  To which I'd weakly smile, raise my eyebrows (one action I could perform without any pain) and reply, "Oh."  I guess it's kind of a big deal when the best of the best are telling you so.

So what happened?  One moment I'm in the daze of a 4:00 am wake up time, slipping into a stylish hospital gown and refusing the Tylenol part of the antibiotic/drug bundle you're given in anticipation of surgery.  The nurses are bit frazzled by my dissent but Tylenol, which is acetaminophen, metabolizes in the liver and several studies document it's harsh effects on the organ.  Another part of the pre-operation preparations is the removal of all jewelry.  I complied.  And then I was asked by everyone I ran into from this point on to remove my necklace.  To which I politely replied,  "It doesn't come off."  The pendant in question was found by Trent, who also purchased one, at a museum in Turkey this summer and tied around my neck shortly there after.  Where it remains to this day.  A few days into my hospital stay, during one of his daily visits, the chief resident informed me the entire surgical team wanted to know the story behind my necklace.  You can read my necklace's story at*

I hopped aboard my chariot and was wheeled to the prep room.  While I unsuccessfully scanned the ceiling for something to entertain me, entertainment arrived in the form of a very attractive anesthesiologist.  Naturally, I stumbled over my words and gave him good cause to wonder if I have brain damage (I do).  I looked liked I'd been plucked off the set of the Walking Dead and all I could think of was, I can't wait to tell Dad about this!  Why the anticipation of discussing dapper anesthesiologists with my father???  Back in May 2013 when Dad accompanied me to my biopsy, the anesthesiologist for this procedure was also ridiculously handsome.  So much so, he even amazed my father.  "Wow.  He was good-looking," Dad professed following his exit from my room upon the completion of our pre-procedure meeting.  I had to wipe the drool from my mouth and regain my composure in order to adamentaly agree.

A short time later, someone manifested behind my bed and propelled me towards my impending fate.  We rounded a corner to enter the operating room and suddenly, I was among a horde of doctors/surgeons/residents/students.  They descended upon me like a swarm of bees.  Medical things and stuffs were hooked up, several IVs were inserted and I was moved onto my side so the anesthesia could be administered into my spine.  A disembodied voice asked, "Are you ready to get drunk?"  I assumed he was questioning my readiness to go under and I guess I was.  The very next moment, it was 8 o'clock at night.  I was uncontrollably heaving while my belly ripped open, blow-torch igniting my insides and my eyes desperately sought help from anyone in the room who could make ANY of it stop.  My dear friend "little button" came to the rescue.  I could push it as much as I wanted but the goods were only released every 10 minutes.  I finally expelled a small amount of brown liquid into a plastic container, squelching the heaving.  I would not consume solid food for several subsequent days.

So what happened between the time I was put under until I was awoken?  They sliced me open from my ribs to my belly button:  a full 6 inches.  The surgery lasted about 5 hours during which Dr. Nagorney cut out the primary tumor in my pancreas, half of my liver, all of my gallbladder and spleen.  He was able to leave about 40/50% of my pancreas.  The tumor grew into the pancreatic bile duct, but they were able to extract it and suture the duct.  Dr. Nagorney said this is very unusual and compared it to firework snakes I watched growing from tiny little hockey puck-shaped cylinders each July during my childhood.  My pancreas will continue to function keeping me from becoming diabetic and eventually releasing me from enzymes.

Dr. Nagorney aptly took care of about 90% of the liver tumors.  This was done by knife or fire.... the medical terms are resection and ablation.  A few small spots remain.  They either didn't show up on on the scan and/or Dr. Nagorney felt the liver had been stressed enough.  Some lymph nodes were biopsied but returned with a clean bill of health, no cancer there!  

I remained in the hospital for 6 days.  The day after surgery I was visited by Handsome Anesthesiologist.  He inquired about how I was feeling and how everything went.  In my drugged and unshowered state I again responded with words that aren't actually English and still looked like a zombie, just one that had been undead a lot longer.  Dad was there and again confirmed the attractiveness of the person who keeps me in dreamland during all my fun procedures. Other activities that day included the removal of my bandages.  Holy unending incision, Batman!  I immediately fell in love with it.  It was asked of me to get out of bed and walk.  I was okay with this idea until the actual movement began.  When your stomach muscles are cleaved in order to reach your internal organs, a few ordinary tasks become mighty difficult.  Take sitting up for example, this was no longer an action I could perform.  Instead, on this day and for the foreseeable future, I had to roll onto my side and push myself into a sitting position.  This usually took awhile and resembled a freshly caught fish flailing about on the prow of a boat.  Laying back down was even worse.  Things continued along these lines for several days.  I slept all the time and found solace in my little button friend.  

Upon my discharge from the hospital, we stayed in Rochester another night in case of any emergencies (there were none).  The next morning my body rebelled against the imminent car ride made longer by the fact we must stop every hour so I could walk in the continued effort to avoid blood clots.  Blood clots = Bad news.  I awoke with dreadful nausea and laid in bed while Mom and Dad packed my stuff and wheelchaired me to the car.  From there I consumed morphine and slept for the duration of the journey to my parents' house in Nebraska, just waking up long enough to poorly perform my required walking....  in my pj's.  Blah, blah, blah, pain and recovery.  MORE IMPORTANTLY, I will have a rad scar.  I always look forward to summer but this year more than ever.  I can't wait to don my bikini and introduce my latest body art to the world.

At the 5-week post-surgery mark, I return to Mayo.  We will discuss the next steps for treatment at my appointment with the oncologist.  In other words, he will propose ideas and I'll decide if I accept or decline.

If I'm to be "jet-setting" to and fro for doctors visits and the like, I'm compiling a wish list.  I live in a fantasy world.  First on the list: a private jet.  Second on the list:  Mayo moves to a warm, tropical place.  Third on the list: it's all free!  Fourth on the list: I don't actually have to do any of this because my cancer is gone!

Return trip to Mayo is complete and I live to tell the tale.

And the tale goes as thus:

One month and some change post-surgery, I found myself airborne.  Destination:  the frigid, flat lands of Minnesota.  Saving grace:  Sherp in tow.  Attitude:  favorable.

In true Mayo fashion they run a tight ship, so we powered through five appointments in one day like rock stars.  Sherp aided our spirits throughout the day with laughing fits (ouch- tummy muscles are still sore.... but it was SO worth it), food/water deliveries, and hair stroking when I just couldn't hold the tears back any longer.  First up was blood tests, then a chest x-ray since I've been having trouble breathing, followed by an MRI, a meeting with my surgical team and finally the oncologist.   Dr. Nagourney and Dr. Paul, the chief resident, confirmed my liver has grown and regenerated as expected.  It's basically back to the size it was before surgery.  When a liver regenerates, it's not an exact replica of the liver before operating.  The analogy Dr. Paul used was this:  it's not like a tree growing a new leaf, it's more like the tree is bushier.  I'm not sure I get this because I'm not sure there is a difference between those two things.  But I'll go with it because he has a medical degree and I do not.  

Things were running as smoothly as a bobsled shooting down an Olympic track until the very last appointment.  I like to compare it to the first play of this year's Super Bowl.  Something good must come from that ludicrous debacle so I redeem my Broncos by allowing them to provide me with yet another analogy.

It's the big game.  The game of my life, if you will.  I've got my gear and #18 jersey on; the back reads Drahota-Manning.  I've just won numerous awards like the "I Can Sit up by Myself," "Showering Doesn't Hurt and Completely Drain All my Energy Anymore," and "Walking Upright" to name a few.  As I step onto the field I'm feeling better than I have in weeks.  All pre-game tests are done efficiently and on or even before (!) their scheduled times.  I step up to take the first snap.  In my mind I see how it all ends:  I slow-motion lift the immaculately polished trophy over my head as the raining confetti sticks to my face and I don't care because I just won the freaking Super Bowl!!!  In reality, the ball is hiked over my head while I'm looking the other way and I bumble like a fool in an attempt to catch it.... but alas, I do not.

Again, in true Lindsey-blonde-cancerbrain fashion, I completely put the lingering tumors out of my head.  Apparently I'm very good at this.  If you have any radical secrets you need to get off your chest, I'm your gal.  Tell me anything!  I'll have it forgotten in no time flat.  Well these little _(insert word of choice)_ are not going to be forgotten.  They're growing like the Seahawks' defense: aggressively.  In an effort to halt this growth, Dr. Rubin's recommends I begin using Sandostatin in the form of a monthly shot.  I do not like this idea.  The sole purpose of this medication is to block the gastrin (secreted from my tumors as they're neuroendocrine carcinomas) and possibly (a good possibility but still just a possibility - as is everything in the cancer world) stop the growth of these tumors.  This medication will NOT shrink or eliminate the tumors.  Now the disease has been surgically debulked and the half dozen surviving tumors can be addressed with this drug.  We'll see if it blocks their progress.  I guess I will oblige and give it shot (pun intended) for a few months.  Sigh.... sigh.

My gallant return to Mayo ended up not being so gallant....  Sigh (again).  For me, surgery was the cure and I was done and the future was sapphire skies full of lemon sunshine.  Negative, Ghostrider.

Time to rework my view of reality... once again.

*This is not a real website.  It is an attempt at humor.

Chopped Liver

It takes a village to raise a child.

No truer words have ever been uttered, especially when it comes to this [tall, slightly older] child.  People have been insanely generous with their donations *** pause for proper recognition of this amazing outpouring which will not only save my life because I'll have my surgery at Mayo, a center of excellence... but save me from financial ruin ***  There have been messages and hugs and love and offers of help in so many ways.  People have offered assistance with my taxes, help when I run out of sick days at work, and of course the fundraisers!

My favorite California girl and teacher extraordinaire, Amy Salinger, decided very early this school year she would be taking over for me when I needed to be gone from school.  This little lady was taking the year off but didn't hesitate one bit to return to Brown when she made her proclamation as my long-term substitute.  HUGE burden lifted from my shoulders.  She took over teaching while I was out for my second round of chemo and is currently somewhere at Brown right now, probably wrangling Kindergartners... one of my favorite things about my job!  Have I mentioned I love my job?  I know everything in our classroom is running smoothly and kids love seeing her everyday.  This is brilliant, Elder Sal!  Thank you (times one zillion).

In a stroke of grandeur and angelic compassion Kim Patton, a mother at my school, sent me an email with a suggestion of some insurance I should look into.  I had no idea this option even existed and my Colorado residency pays off once again as it's only offered in the Centennial State.  Her message was very detailed and even included accounts of what happened when she called to inquire on my behalf.  This wonderful woman has substantially cut my impending medical debt and saved me from a growing mound of stress.  Kaiser denied my referral to Mayo and the appeal... rendering me without coverage.

I have purchased the additional insurance Kim suggested.  I did so by the proper deadline and my coverage began January 1, 2014.  Hip, hip, HOORAY!  I called to give Mayo this information.  When the business office called back, I was hesitantly told my new insurance would only provide 50% coverage.  To which I jubilantly exclaimed, "That's wonderful!"  Fifty percent is leaps and bounds better than nothing!  My reaction of merriment was again met with surprise when she stated I will have a significant deductible.  "Okay!  No problem!"  Instead of walking in the door with the quoted amount of $57,000 or be turned away (and that was just the downpayment, not the total for surgery and subsequent hospital stay), now I can let the bills roll in and pay them as they come with the assets gained from the fundraisers.   I believe we can now stop throwing around the "B word" as well.   That's bankruptcy, but the way, in case you were thinking of the other B word.

So, the time is now.  We met with the Mayo surgeons today and I couldn't be more convinced I'm in the right place.  If you are particularly attached to any of my internal organs, speak now or forever hold your peace.  Come tomorrow, I'll be a little thinner in the midsection.  My aunt Deb suggested they install a zipper so if we have to go back in, it's easy access.  I picture my belly looking like a tub of ice cream with a bunch of scoops missing.  Is anyone taking this seriously???  I hope not, it's going to be brilliant!  Laughter truly is the best medicine.

Catch ya on the flip side!

This post is dedicated to you, the readers of this blog.   When I came up short again and again, in the words of the great Theodore Roosevelt, you entered the arena with me and together we dared greatly.  My face was marred with dust and sweat and blood (and tears), but this week I rise in triumph and it's because you stood with me and now hold my arm up like a boxing referee as we declare victory.

Farmer's Market

You know that radiant, effervescent feeling you get on a sunny stroll through the farmer's market?  Your face is warm and the air smells earthy like days of long ago.  Or the feeling of sheer awe when you first glimpse the colors of a brilliant sunset and your breath catches at the impossible beauty.  Or the moment of accomplishment at the end of a daunting task which was certain to fail but didn't and you're euphoric with jubilation.  The past month of my life can be described as far exceeding the combination of all these.

It began with my eyes blinking in disbelief as a smile parted my lips and spread across my face… and over all the land.  This of course was my reaction to the Mayo doctor's explanation of the surgery he can perform that will give me, in his words, "a long life."  My head detached like a child letting go of a balloon and it floated into the sapphire sky; smile permanantly affixed.  Amazement mixed with elation and I time-lapse bloomed into a new person at that very second.  My future was returned to me.  I will live.

After my balloon head euphorically floated throughout the galaxy for 24 hours, the attached string was nabbed and brought gently, lovingly back to the best place on Earth, Brown International Elementary School.  It was revealed to the Brown community I've been working on this little cancer thing for a bit now and without blinking an eye:  ACTION!

A party.... for me????  Surely you jest.

Jest they do not and PAR-TAY we did!  Drahota Lives grew overnight from a miniature seedling to a colossal beanstalk.  Nicole and Steph, you are magical.  You two are like the (good) witches in Practical Magic.  I'm totally on to you!  The things you're making happen are supernatural and brilliant.  Thank you for stretching your light, love, energy tentacles out into the world and wrapping them around me.

Lead by the talented and ever so cool DeWayne Even, Edgewater Live rocked the party.  A silent auction with weekend getaways to Breckenridge, Broncos tickets, Nuggets tickets, art by the ridiculously talented Barth Quenzer, plus tons more captivated even the young ones who guarded their merch in an effort not to be outbid.  Good work Kalie and Kenzie for snatching up my painting!  The massive food spread kept everyone nourished and the volunteer bartenders got 'em saucy.  The evening was a HUGE hit in so so many ways.  Money was raised, laughs were shared, smiles radiated, hugs were given out by the droves, we danced and sang.   This is what life's about, sharing a miraculous evening with phenomenal, illustrious humans.

As I said that night, I was not going to cry.  I should have been a blubbering idiot at the sight of everyone who came out to help me.  I simply couldn't cry; I was happy.  I felt hopeful for the first time in a LONG time.  The evening was magical.  The life-extending news from Mayo and my adventure since is magical.  Besides, I have cried far too many tears about this ordeal.  I've been in the black trenches of agony/grief/suffering and I will not return.  I recall one particularly heavy night I couldn't stop the tears... just days after my second chemo treatment I was trying to hid out when mom came to check on me.  My attempt to wipe my eyes so she didn't see was futile.  I had to fess up, "I'm just feeling sorry for myself."  Talk about a dramatic shift in perspective.  My mind is working overtime to contend with the torrent of emotions and information it's been slammed with over the past year.  And now the pendulum has swung the opposite way and I'm inundated with joyous emotions.  Sure there are days when I awake in the fog of reality and sadness creeps in.  Those are the days I think back to my party, hug my friends, laugh with my students and it's instantly better.

I choked up when I had a moment alone with Shelley and told her, "You realize we're friends forever, right."  Shell played an integral part in organizing the party... and in being right by my side through this whole journey.

And the tears came when this happened:  two years ago I had a student we'll call "I."  "I" was, for lack of a better word, challenging.  I'm laughing just thinking about it!   I love good challenge and I love "I" to infinity and beyond.  His aunt, whom I got to know very well during "I's" tenure in my class tells me, "'I' has been working very hard and saving his money.  He has something he wants to give you."  He handed me a brand new one hundred dollar bill.

The past weekend was dedicated to "Helping Lindsey Lick It."  Basha's brainchild started Friday evening at the local ice cream shop, Little Man Ice Cream.  They sold ice cream and kids came out to carol in their pj's in my honor.  I desperately wanted to join but my body decided to remind me what all this is about and I was quite ill Thursday evening.  I missed work on Friday and the Christmas party I was supposed to attend as arm candy (sorry, Bets).

They say that breakfast is the most important meal of the day and Saturday proved this to be true with the weight of the moon.  Not only did Niya, without having met me, donate the space in her rad establishment, Local 46, she told me she stayed up all night reading my blog.  (I'm calling for an end to this blog causing a loss of sleep -- that goes for you too, Jenny!).  Niya, thank you!  I'm so lucky to have a new friend.  Trent dressed as Santa and Artivore showed up to take pictures with the kids.  A huge layout of breakfast foods filled our bellies and the kids sang songs.  There was another silent auction.  I put Lola Drahota down for the opening bid of $5 on a 2014 "Cat Lovers Against the Bomb" calendar (Cat Lovers Against the Bomb- what? hilarious).  She won!  I'm still laughing at Nicole announcing the winner by meowing into the microphone.

A few students spoke.  Lucy read the poem she wrote for me.  (I hope you don't mind I'm sharing, Lucy, this is too angelic to keep to myself.)
Just try and keep a dry eye, I certainly couldn't:

Feeling scared and unprepared are the feelings we all share.
And whatever you do I'll always be there for you.
You mean a lot to me.
And you make me feel like I am who ever I want to be.
I love dogs and you're a crazy cat lover, but that doesn't matter.
Miss Drahota you are a determined, hekava good teacher on a mission to amaze everybody.
You are awesome, strong-hearted, and beautiful.
I love you Miss Drahota you are my favorite teacher ever.

I have the best job in the universe.

Saturday afternoon in the Highlands, while doing a little shopping and grabbing a chai with Vivek, I walked out of a store and exclaimed, "That's me!"  I was staring at the "Help LINDSEY Lick It" poster hanging in the storefront.  As we strolled down the street, we discovered this poster adorning many of the boutiques' windows.  I constantly struggle with the words to express my deep and ever-growing gratitude, I will never find them to express how it feels to have your name on posters all over north Denver.  Stunning, unbelievable, humbling, wild, stirring.  That's a start.

Basha, you better be resting in bed!  I demand you sleep.  You have far exceeded the call of philanthropic work with all the events of last weekend!  Thank you for taking on my cause, you extraordinary, enchanted woman!

The weekend ended at Jolene's house where the masses convened to have their jewelry cleaned... and I'm sure the wine lure a few too.  Monica and Jolene, tirelessly returned the sparkle to the diamonds that adorn the women of Brown so they can shine even brighter!

I'm not a natural receiver, so taking in all this attention, concern, and money (especially the money) is a new development for me and I'm really trying.  I work every moment on processing the monumental outpouring of love I've received over the past several months.  I'll be processing and applying it for years to come.  I will ride this love tsunami right over cancer's stupid head and beyond.

I'm loving my life full of yoga, acupuncture, painting, writing, reading, juicing, friends, new friends, family, school, love and happiness.

I'm missing names and I'm sorry.  I don't know the extent of who has done what.  Please know that your dazzling display of kindness will not go unnoticed.  I will pay every cent and good deed forward.  I've got a few ideas about how to do this.  I might have the doctors clone me so I can make it all happen.  They can do that at Mayo, right?

Olive Branch

After riding high on the rainbows and moonbeams of what has been the past month and probably the best of my life, I'm on the verge of full-on Godzilla mode (again).  

It would seem as though I have developed a vendetta against medical professionals but this is not the case.  Doctors who a) speak to the wrong person during my cancer treatment consultation (see Bananapants) and/or b) decline to write me a referral quickly from my favor.  I've favorably mentioned a certain Kaiser surgeon several times in this lil blog o' mine.  I can no longer do so.

It all started Tuesday morning when I put in a little call to Kaiser.  I assumed it would be quick and relatively painless.... I should have known better (dang my internal optimism).  I was inquiring into the status of my referral to Mayo for my surgery, which is slated for January 8th.  Everyone I've spoken with is certain a referral will be denied but sheer refusal to write said referral???  That was completely unexpected.  The aforementioned surgeon, without giving me a heads up, noted in my file that no referral would take place because he thinks they can perform the surgery I need at Kaiser.  The answer is no, you can't.  Mayo has been doing this for years and pioneered the treatment for my type of cancer.  I need a neuroendrocrine expert.  This has been my mantra for months and I'm not going to stop chanting it now.  The hospitals with neuroendrocrine expertise are Mayo and John Hopkins according to my research.  Mayo wins because it's closer than the east coast.  Kaiser and UC Hospital ruled out live donor liver transplant (down the road), Mayo put it back on the table.  Mayo will ablate the liver tumors, Kaiser chemoed them before and without concern for the primary tumor in the pancreas.  Everything they say at Mayo makes sense.  It is clear, concise and precise.  It's what I've craved all along.

The Kaiser surgeon talked me into an invasive surgery, the Whipple, that would have completely altered my life.  Both UC Hospital and Mayo agree that is not the best treatment.  Both UC Hospital and Mayo agree the primary, pancreatic tumor is in the body of the pancreas and can be saved in part.  The Kaiser surgeon repeatedly explained it's in the head of the pancreas and must be fully removed.  

A few tears, massive stress, and one zillion phone calls later.... Mayo is sending the request for the surgery referral.  Victory!  A measly victory but a victory nonetheless.  I'll take them any way they come!  Plus, I've been winning a lot lately so this little bump in the road isn't going to impede my army as we continue the march into battle.  

After Mayo sends the request, Kaiser can approve or deny it -- something I thought was already in the works.  At least the process is now started.  If we're denied we can appeal.  Since Kaiser is an HMO, a fantastic idea for health care until you get a rare cancer, they will probably not cover my surgery.  We called the Mayo business office and asked for an estimate on my surgery and subsequent hospital stay.  They quoted numbers that don't exist in Teachersalaryland where I live.  We are to walk in the door with an amount that is well above what I make in an entire year or I will be turned away.  Okay, laugh it off.  Whatever happens will happen.  Plus, my army is on fire right now and they are rocking the fundraising house!

(Quick side note:  Every ounce of my being rejects any idea of anyone giving me any money.  This is probably the hardest part of having cancer, honestly.  I'm learning that receiving the gifts people are willing to sacrifice from their own hard work is a lesson in deep humility and gratitude.  My fruitless search for the words to thank everyone continues in amplitude.  They will come someday, somehow, someway.)

So, Godzilla transformation adverted (again).  I don't hate doctors or the surgeon referenced several times in this post (see other posts for info about him, Mayo, and all things Lindsey/cancer related).  I'm simply trying to get cancer out of my body.  I'm not on the warpath against surgeons, Kaiser, or the medical system.  Although, it would be a lie if I said I hadn't thought about it a time or two or twenty.  My motives are to figure out how to have cancer.  How do I cope with this entity in my body which causes me daily discomfort and pain?  I've learned there is no clear process or list of procedures.  All I can do is listen to my body/heart/soul/mind.   They say Mayo is the best place for me to receive the treatment and surgery I need.  I will listen as I have done before.

I'm just a girl who wants to get better.

Humble Pie

I'm a fairly private person.  My introvert side whipped into a frenzy when I opted to come out of the cancer closet last week.  Word is spreading in the community and to our families at school.  It was no easy task, but coming out has made me privy to the grandest event I've ever witnessed.  Everyone is exuding the most brilliant energy.  There is a golden aura encapsulating the world emulating from people’s love and light.  A whirlwind of human greatness swirls around me and I’ve got the best seat in the house.  

Cancer, you may have bested me before but now you're down in the count.  Prepare to be defeated.  You gained the upper hand when it was just me and my small band of Merrymen.  We’re not easily conquered.  AND now we have an army.  The people by my side has multiplied ten fold.  Checkmate.    

A Turkish proverb states, "Tell me who your friend is and I will tell you who you are."  In this essence, I am Jenn's brilliance, Sarah's exuberance, Tiff's animation, Lyndsey’s generosity, Betsy's empathy, Shelley's vivacity, Dad's strength, Susan’s tenacity, Aunt Deb’s consideration and the Brown Moms' fervor.  PLUS the millions of traits bestowed upon me by everyone I didn’t name... and so desperately want to name.  I’ll start a new blog and call it: I Want To Thank Everyone Personally But Can’t So I’m Writing Your Name On This Blog Which is Not Even Close to Being Good Enough But I Don’t Know How Else to Thank You and I’m Getting Buried Under a Mountain of Indebtedness.  That has a nice ring to it.  

The outpouring of love from the Brown community has been purely epic/monumental/heroic.  The masses are rallied to my side and the flood gates opened.  Students are starting to hear about me from their parents.  With a gentle tone and loving smile I ask the kids who have “that look” if there is anything they want to talk to me about.  Their precious and perfect answer, alongside an expression of concern and compassion, is a variation of, “I’m sorry to hear you have cancer.”  Questions about how I’m feeling follow.  I assure them I'm doing GREAT.  “I’ve found some really good doctors who are going to help me.”  I receive lots of hugs.  Today, I was excitedly handed an envelope.  Upon opening it, I found a handmade card with a picture of a kitty that reads, "I hope this will help".... and six dollars.  

Jenn Stuart, marketing revolutionary and graphic designer extraordinaire, has secured my place in history with the dawn of Drahota Lives and  Anyone who doesn't know what to do with a few extra bucks can get rid of them here.  Rest assured, this body you're helping me fix will be amply taken care of.  I'm very good about my diet, with the occasional exception of a mini Snickers self-propelling itself into my mouth.  I can’t control that.  I always wear my seat belt.  I recycle.  I can't wait to get back to regular workouts and yoga.

Aside from school/work, I’m officially out in social media.  I act like Facebook is ridiculous, and it is, but I gotta say it's shown me a lot of love recently.  Thank you for taking the time to reach out to me.  Your words are heard.  Friends and friends of friends shared the link to and urged facebookers around the globe to donate.  The power of social media is quite mind blowing.  

Whilst enjoying my favorite app in the universe, Spotify, "Who's Thinking About You Now" began crooning in my eardrums.  I froze.  Everyone.  The realization I had in that moment is:  Everyone is thinking about me.  Not just thinking but donating and organizing and being brilliant and caring and FAR too generous.  I will simply continue to sink into a debt of gratitude towards half of the planet for everything that's happening.  I don't deserve any of this but I'm reveling in the miracle of it.

Extra Mayo, Please!

Give me all the mayo in a five hundred mile radius!!!  I don't even eat dairy!  Is mayo actually dairy or just synthetic?  Who cares!  What am I rambling on about when I have the BEST NEWS EVER.  

The Mayo Clinic can fix me!!!!  Ask and you shall receive!  (see previous post)  I didn't get a dashing, young doctor but what I did get is one trillion times better:  life.  At my appointment terms like "long life" and "decades" were being thrown around.  I basked in their glory.  

Dr. David Nagorney, the surgeon we met with and my new hero, can operate to remove the vast majority of my disease.  Happy dance, happy dance, happy dance!  Shout from the rafters, sing songs of joy, dance in the streets!!!!  On the chopping block is the primary tumor, located in the pancreas, part of my liver, gallbladder and spleen.  Peace out!  Left behind will be the pancreatic head or about 40% of the organ.  This is enough pancreas for me to live normally, I will not need insulin or enzymes.  More dancing!  The pancreatic body and atrophic tail will be resected.  The left side of my liver or the worst looking part, will also meet its maker.  Then, any left over liver tumors will be ablated Burn baby, burn!  Since the cancer has micrometastasis in the blood, there is the strong chance of returning incidents.  Following surgery, I will be monitored over the years for tumors that may crop up.  These will be put on watch if they aren't causing any problems or ablated if they are. 

Surgery isn't scheduled yet.  First, I must clear up a few pesky details like work stuffs and how to pay for any of this.  Then,  Rochester, Minnesota here I come... again.  New favorite place, right Tiff?  

Finally, a plan!  Better yet, a plan that makes sense!  I didn't know it but this is what I've been looking for over the past 8 months.  Even better is a plan involving an abundance of living time afterwards!  Saying I'm happy would be an immense understatement.  But still true.  It's now Wednesday and this news was delivered Monday, I'm still floating on cloud nine.  Life is good again.  Stress released.  Smile returned and multiplied seventy jillion times.  

Dad, I couldn't have done this without your quiet company as you tirelessly criss-crossed the Midwest to haul me back and forth to Minnesota, often in snow and the dead of night.  Sherp, #PIC.  Mom, we got our plan.  Deb and Kendall, watching Lola is no easy task but you have prevailed remarkably.  You, readers of this little blog o' mine, we did it.  It was your prayers, love, light, cards, thoughts, messages, lunches, late nights that held me upright when I was crumbling   Now, we just sit back and let the experts at Mayo take over.  

My beautiful people here in Denver are planning a fundraiser in my honor.  Wild, yeah?  A younger me would have silently backed away with raised eyebrows thinking they are coo-coo for Coco Puffs if someone had said there'd be fundraiser held for me at 32 years of age.  Stay tuned for more details.  It's going to be a big, fat party and you're all invited!!!   

Let the good times roll!!!!!!!!!!!!!  

Corn Maze

I'm going to tell you what I want.  I don't feel as though I'm asking too much.  And I certainly don't see why I'm NOT getting what I want.

Here goes.....

An exceedingly experienced (and handsome) doctor strides purposefully into my assigned room.  He shakes my hand, knows I'm the patient, and is quite taken with how young and vibrant I am.  He proceeds to tell me how he's poured over my medical records, reviewing them for hours.  He is desperately sorry this is happening to me and he has a plan.  Then, he lays out said plan and I'm whisked away to be fixed accordingly.

Warning:  prepare for full-on ranting.

The week prior to my trip to Mayo was spent gathering the medical records they requested.  Did they ask for a copy of one thing I could easily obtain?  Nope.  The list was long.  Could any of it be found in the same place by contacting one person?  Nope.  Day after day I made phone call after phone call to place after place.  I had to access:  the report and slides from my biopsy, all of my scans and the accompanying reports, notes from each chemo treatment, my full medical record and surgical report and notes from my physicians.  Were the slides they'd given me the correct ones?  Nope.  The day I was getting on a plane for Mayo, I copied all of the records I collected.  I'm obsessed with knowing all there is about what's happening to me.  While doing this, I discovered the error.  One meltdown and three hundred ninety-two phone calls later, my slides were found at the University of Colorado.  So I PT Cruised my little tail over there to pick them up.  Alright, I was all set!   The stress was worth it because I was finally going to Mayo!  Hooray!

After flying into Minneapolis Tuesday night and driving to Rochester in a snow storm, we awoke early Wednesday morning so I could have blood work done and a CT scan.  The rest of the day was spent in Rochester.  It was.... fun?  Okay, it was fun.  Dad found a great lunch spot serving gluten free selections (and wine!).  The best part was girl time with my sis!  What would I do without you, Fry?  You are my Sherpa, my rock, my twin, my BFF and partner in crime.

Remember the aforementioned wants?  I was ready.  Thursday was the big day, time to kick ass and take names!  What actually transpired was a brief, highly unfulfilling meeting with an oncologist and then I spent the weekend in Nebraska.  All they told me I needed to meet with a surgeon after having an MRI.  I'd nearly thrown up in the waiting room before my appointment.  After checking in and finding a seat on one of the couches, I became abruptly, terribly nauseous.  I wasn't sick.  I was overwhelmed, fervent, anxious, exhausted, insane, petrified.  My Sherp hassled the nurses for some H2O and I started chugging water.  It was all for not, though, because nothing happened.  There are three ways to treat cancer:  surgery, chemotherapy, radiation.  The liver is not typically radiated, leaving surgery and chemo as my options.

Exiting my appointment with zero answers, Mom and Tiff headed to Minneapolis to catch our flights back to Denver.  Dad and I sat around for hours and hours awaiting my MRI time, which was 6:30 pm.   When I finished around 8:00 pm, Dad and I headed to Nebraska.  The other options would have been staying in Rochester over the weekend or flying to Denver and then back to MN.  It was a lose/lose situation.  Rochester is not exactly a hopping place.  Dad drove through the night and we finally sank into bed around 2:30 am.

What confuses me, among every single thing in the health care system, is this:  why didn't the surgeon just come to my appointment?  If they knew I needed a surgical consolation, why wasn't he or she there to consult?  Why wasn't an MRI ordered in the first place instead of a CT scan?  Why did they take up my time to tell me they can't tell me anything?   It's quite certain I'm not running the health care system because it would not be this disjointed.  Everything about it is wrong.  So now I sit in the Midwest, waiting for a Monday appointment with the surgeon to see if surgery is a possibility.   Preceded by a 6 hour drive back to Minnesota, it should take about 1.5 milliseconds.  The answer is either yes or no.

UGH!  It's getting harder and harder to contain my Godzilla side.  Perhaps it's just time to release.  I mean, it's not like I'm pissed someone rear ended my car.  We're talking about my life here.

I'm sorry to my Nebraska people for not being in contact.  My trip to Nebraska was literally last minute.  I simply need some down time.  I also do not want my pent-up rage to be unleashed unnecessarily on the wrong people.  Please except my deepest apologies.   I truly love you all.

Mayo on the Side

I finally get why they call it a fight.  I'm in quicksand fighting my way out.  Little known fact:  you're not supposed to struggle should you find yourself in quicksand as it causes you to sink faster.  But struggle I am.  In my skewed perspective of how things work, I envisioned doctors and nurses gracefully, magically appearing at a cancer patient's bedside with reassuring smiles as they inject new and improved drugs into their IV.  Meanwhile, the patient enjoys a nice cocktail of pain meds with a blissful grin on their face as they slip into peaceful slumber.  The drugs devour the cancer cells and pain medication brings hazy, enchanted dreams.  Birds land on the windowsill and sing cheery tunes while bunnies and squirrels change the bedding and fluff the pillows.  

Apparently, this is not the case.

I called the Mayo Clinic in Minnesota last week to, as I can only find one way to explain it, beg them to save my life.  I had no idea how much work it is to have cancer.  I called Mayo for an appointment with a nueroendrocrine specialist.  I am constantly researching.  I am reading book after book about cures, symptom containment, herbal remedies, and more.  I have to decide what to do.  I have to adjust this straight jacket because it's a bit difficult to type. I emailed my Interventional Radiologist this week and ASKED to be chemoed.  I'm officially looney bin material.  If we are putting surgery on hold for awhile, I decided to do another chemo treatment to the liver.  There are new tumors on the right side and they did not ask nicely to hang out in my abdomen.  No "please" means you meet Dr. Johnson and his little bag of tricks.

I feel great and I'd say it's mostly attributed to the fact I now weld the control.  Power is exhilarating.  All the movies I've seen with a power-hungry lead character who must destroy anything in his way are totally true.  Move over Thor and Captain America!  There's a new superhero in town.

I must specify: move into my place Thor and Captain America.

So, I'm off to majestic Minnesota.  I hear it's lovely this time of year.  The doctors at the Mayo Clinic better have their game faces on, otherwise you'll hear my Godzilla-portioned tirade from your respective location on the planet.  Maybe someone should warn them.


Time out.  I'm calling time out and throwing a penalty flag.  Too many men on the field.  So far, I've been advised about my treatment plans by a male surgeon, a male interventional radiologist, and a male oncologist at Kasier.  Now we've thrown into the mix another surgeon (male) and a male oncologist from the University of Colorado Hospital.  

My team and I are regrouping after being handed a bit of a shock from the doctors at University of Colorado Hospital.  A good shock, don't panic, but a shock none the less.  I think it's time for me to reassert myself as the official in this game.  

And what a game it is.

After weeks of extensive anxiety and massive hesitation about the Whipple procedure, I was strongly convinced by my surgeon at Kaiser it is the best course.  We  Could  Go  All  The  Way!!!  Win the championship and take home a shiny trophy.  If it were up to him, I'd already be cut up and recovering as he wanted to schedule my surgery for mid-October.  The single appealing aspect of this is my reunification with my beloved Morphine Pump (see Through the Grapevine for explanation.)  Wait, I lied, there are two appealing aspects, I would also be minus one pancreatic tumor, a foggy daydream at this juncture.  I abandoned my "the Whipple removes so much of my insides, redirects my digestive system, requires a long recovery and renders me diabetic.... ALL of which can't be undone and I'm only 32" path at the paradoxical fork in the road.  I took up course on the "I'm SO strong and this will be SO HARD but I can do it, I can do ANYTHING! No Katy Perry, you hear ME roar!" trail.  Full speed ahead.

Whistle blows.  The referee waves his arms.  The previous play is under review.

What we heard at UC Hospital was what I've wanted to hear ALL ALONG.  It was a strategy right from my own playbook.  As I said, I am not a fan of the Whipple, so hearing what we did was good..... HOWEVER, I could barely see straight enough to listen to anything.  See straight enough to listen?  Yes, that is what I mean.  Chemobrain, it's real.  

The UCH surgeon lost me straightaway when, milliseconds after entering the room, he asked, "What is this?" and gestured in disdain to my iPad.  I had it all set up to record our conversation.  How dare you vilify one of my Apple products.  And who doesn't know what an iPad is?

"An iPad," I replied in a tone dripping with its own disdain and a chalk full of scorn.  I knew what was to follow....

"Please turn it off.  It alters the tone of our conversation."  While stopping the recording, I turned to my sister and mouthed, "Pissed!"  Who are you to tell me I can't record a conversation about my body!  Since I was caught off guard, I couldn't think coherently enough to get my way or just leave the damn thing on.  I understand you don't want to be sued but what would you say differently while being recorded?  Makes me wonder.

The doctor's misfortune continued when he commenced his spiel.  Although I was perched atop the thin layer of paper adorning the patient's table, he began to address my mom.  He told her they have reviewed her scans and labs, a panel of 20 plus doctors have come to a consensus about treatment options, but first, we'd like to hear about her symptoms, what first made her think something was wrong?  My mother motioned to the actual (crossed-armed, visibly furious) patient, yours truly, and explained coolly she doesn't have cancer.

Allow me to digress:

Sooooooooo, sir.......... when you and this alleged panel of 20 or more alleged doctors were allegedly reviewing my scans and all other things medical.... it never came up that I'm 32 years old?  From what I've heard, cancer treatment varies quite a bit depending on the patient's age and several other factors, so age would/should be discussed when talking about treatment options.  How did you just walk into a room and not know who is the patient?  I markedly look 32.  In fact someone just the other day said I look 25!  So there!  (I had to throw that in my rant.)  Did you get high at lunch?  YOU ARE TALKING ABOUT MY LIFE!  L-I-F-E.  Here's a little idea.  I came up with it right off the top of my head:  get the patient's name before you walk in their room, introduce yourself to the humans in the room, make a match between human and name.  Mind-blowing, I know.  

As I sat atop my paper covered perch, shaking from distress and desperately trying to make my notes legible, we learn of a magical chemo pill used specifically in cases like mine to shrink the tumors.  WHAT?!?!?!  I was diagnosed in May, it's now October and this is the first I'm hearing of this?  Excuse me for being more than a little exasperated.

If we were to do the Whipple operation to resect the pancreatic tumor, all treatment of the tumors in the liver would halt during recovery.  Most of the tumors in the liver treated during the chemo embolizations have responded (yay!) but there are still some residual tumors.  It could be very dangerous if these tumors were to grow or spread.  This chemo pill will target the spread and growth.  So very technical of me to call it a chemo pill, yes?  Guess I don't have that medical degree just yet... but I'm close.

Something told me I needed to talk to someone else.  I listened and earned my spot in the Hall of Fame for it!  Even though I was not incredibly happy with who I talked to, I heard the opposite of what the Kaiser surgeon was telling me.  I knew there was something wrong with the Whipple surgery, but I'm not in the end zone just yet.  Not even near the 50-yard line.  There is still a surgery in the mix.  Truthfully, the Whipple is still a possibility.  The hope is after the magic beans do their tricks, my pancreatic tumor will be cut out along with my spleen.  Sorry Spleeny, I don't know who you pissed off but I guess your karma is on the same playing field as mine.

Another point of contention came up when we were told part of my pancreas could be saved.  The pancreas is a gland behind your liver and stomach in the upper abdomen.  It is about 6 inches long with the head being widest part, then the body and tail.  The people at UC Hospital say the head of the pancreas could be saved.  The body, where the tumor is located, would be removed along with the tail which is basically atrophied at this point.  My Kaiser peeps report only the tail might be saved, if any of my pancreas can be salvaged, but the head and body would be removed undoubtedly.  

These statements do not match.  

My head is spinning.

Epilogue:  Upon completing some research on the chemo drugs in question, I have VERY strong doubts.  Until I hear from a credible, neuorendrocrine specialist, I have several reasons to abstain.  I know my cancer is very rare but there has to be a neuroendocrine specialist somewhere.....  I'm just like Fievel, wearing tattered clothing and singing to the moon, "Somewhere out there...."

First, according to the drug's very own website, only 9% of people experienced any shrinkage (why does this word make me giggle?).  Clearly I'm not a mathematician.  I couldn't even spell mathematician.  If I were to make wild guess, 9% isn't very high.....? 

This chemo pill sounds fine and dandy when the doctors are pitching it, but that's exactly what it felt like:  a sales pitch.  Who is in the background telling the doctors to tell me?  What's in it for them?  Excuse me for sounding like a crazy conspiracy theorist.   Did I mention this medication just so happens to be around $3,000 a month?  Plus, there are extreme risks associated with it.  So, it begs the question:  who benefits from this pill?  It certainly doesn't seem like it would be ME.

So here goes.....

Sutent ("the chemo pill") metabolizes in the liver.  The first of many intense side-effects being damage to the liver.  There is a huge risk to the liver and it says so several times on the drug's website.*  According to my latest blood tests taken on October 2nd, my liver is showing signs of damage.  This is the first time my blood tests have come back abnormal, meaning my liver is being impacted by the chemo embolizations.  Results from the Oct 2nd blood tests show my alkaline phosphatase levels to be 182.  The normal range is 28-111.  My ATL (76) and AST (67) levels were also high.  These tests determine liver damage and high numbers indicate damage.  If you peruse through the drug's website, it warns of the liver damage (and death) several times.

I'm of the opinion more damage should NOT be done to my liver.  Shrug, shrug, eyebrows raised.  I can apparently live and function without a pancreas, but replacing my liver would be much more harrowing.  According to UCH, a live-doner transplant is off the table and it's not promising to be on the transplant wait list.  As much as possible, focus should be on keeping my current liver as healthy as possible.  

The side effect inventory continues.  It includes issues with heart function.  I've been down this road before, my heart has already undergone a procedure to "fix" it.  I found this on the Mayo clinic's web-site, (see the 6th and 7th paragraph-- and all the paragraphs):  heart side effects.  As with my liver, I'm going to advocate for my heart.  She has been through quite enough and doesn't need a chemo pill, with a measly 9% chance of shrinking my pancreatic tumor, messing her up again.  Plus, I kind of need a heart for, you know, living.... that silly little detail.

In summation, notice "can cause liver problems" is immediately followed by "including death."

Liver risks=scary
Heart risks=scarier
Death risks=scariest

Cancer, you have me an impasse.  I don't know what to do.  I'm sure I'll figure it out but right now, I'm stumped.  

Cancer 1, Lindsey 0

*Reminder:  while you read on the websites linked above or any website, keep in mind my cancer is pancreatic NET (neuroendocrine tumor.)

This post is dedicated to my mom, Jennifer Drahota.  Mom, you could easily pass for someone much younger!  Please don't misconstrue my anger at this man who walked into my appointment and started talking to you as though you are the 32-year-old patient as anything but a human who made a mistake with the wrong Cancer who can't let it go.  You have been really wonderful during all of this.  I can't imagine doing any of it without you taking care of me, your little girl, as you always have. 

Busy Bee

My to-do list:

1.  Buy a walker now that I'm 90 years old.

By no means do I intend to offend any person advanced in age.  In contrast, I'm quite jealous and applaud your strength.  Congratulations on achieving old age.  Our commonalities are not things most people my age find routine.  Like, for example, walking slowly or riding the elevator.  Eating like a bird and doing so around 4:00.  Going to bed around 8 o'clock.  Or even 7....  alright, alright, OR even earlier sometimes.  The time we arise is probably comparable as well if you're getting up before the sun... and your alarm.  Oh, you don't have to set an alarm since you're retired?  Retirement.  Here is something we do not share, much to my dismay.  How lovely to attend appointments by the thousands, face treatment after treatment, sleep when exhausted, and rest when in pain without the constant anguish of using sick days.  How does one get money without having to work?  

2.  Figure out how to get money without having to work. 

3.  Buy tennis balls for my walker.

4.  Invent a new word for thank you.

At the risk of sounding redundant, I have a lot of people to thank.  However, I lack adequate means to accomplish this task.  "Thank you."  Ack- boring.  It's Marty McFly's fading image in the photograph he carries in Back to the Future.  I'm over it.  I need a shiny, new method of showing my gratitude!

A Turkish proverb states:  thorns and roses grow on the same bush.  This is the most accurate reflection of my current situation.  One of my bright, cheery roses is a slimmer body in a size I haven't been since before middle school!  I'm definitely not bragging.  I'd much rather be my usual shape and healthy...  but it's freaking fantastic to buy jeans in the same size as your girlfriend who you look at thinking, "Dang she's skinny."  Another colorful rose is remaining healthy looking and keeping my hair.  I'm incredibly grateful for this.  I sound shallow and frivolous but having no control over the happenings in your body where cancerous cells are rapidly dividing and obliterating your internal organs will do this to you.  I'm very often in pain or feeling discomfort so at least I can look well on the outside.  Finally, the colossal, exceptionally fragrant rose is the uncommon opportunity to find out how many people in this world love you.  Truly, I don't think people stop to realize how much love surrounds them at all times.  Presently, I know.  And I'm thankful.  __(insert new word here)__ for the cards, love, hugs, prayers, thoughts, care packages, love, chats, presents, prayer quilts, love, blog-reading, flowers, smiles, and love.

5.  Create zillions of cards with my new word for thank you.  

Become a zillionaire.  Cross off #2.

6.  Blunder into a cartoon-like situation where the zany, scientific character creates a way to enhance brain power thereby giving me the capacity to make life-altering decisions with ease.

I'm Gollum-like obsessed with the few remaining brain cells I posses.  My precious lone troopers and I are faced with some pretty harrowing decisions.  It's taken some time, major convincing AND a trip to meet with the "experts in their fields" at the University of Colorado hospital (one of the best hospitals in the nation has apparently just been sitting right under my nose this whole time.) but I'm going to go ahead with surgery.  I had hoped to be referred to Mayo or John's Hopkins.  No, I'll simply drive to Aurora, a Denver suburb not exactly known for its aesthetics and tolerance, a trip typically only reserved for passage to the airport.  During my consolation, the leading expert in all things pancreas Dr. _______ (I forgot his name), several other doctors and my surgeon, Dr. Weinfeld, will form a panel and review my case.  Since I have a wildly rare cancer, it's good to hear what everyone has to say on the matter.  The process will last the entire day so I shall don a tiara and sash reading, "Queen for the Day" and assume everyone is at my whim.

The surgery in discussion will considerably alter my life.  Surprise!  Maybe at this point I should just be used to having life-altering news flashed in my face.  My surgeon doesn't think there will be enough of my pancreas to salvage.  If there is, it won't be much and not enough for it to operate at normal capacity.  I was reverently assured you can live without a pancreas, a large hurdle for me to leap as I was convinced of the opposite.  Following this extraction, I'll be rendered diabetic.  A diabetic is a person with a pancreas that doesn't function or functions poorly.  I'll be a person without a pancreas that doesn't function.  After my pancreas checks out, I'll take over its job of providing the digestive process with insulin and enzymes.  I'm already taking enzymes every time I eat so this won't be new.  I had hoped to discontinue this practice post-cancer but I guess I'll just find new love for my little enzyme friends.  The insulin thing will be all new to me.

7.  Tackle insulin obstacle when I get there.

The surgery is tentatively being placed sometime at the beginning of November.  Dr. Weinfeld, who just recently started sporting a goatee, and I will be in the operating room for 8+ hours.  I assume he'll head home after this to watch football and eat wings on the couch while I hang at the hospital for awhile.  More to come on this as I don't know the all the details of what happens after surgery, for Weinfeld or myself.  Maybe instead of wings he'll have popcorn and watch the Voice.  Perhaps it will be a sandwich and a John Hughes movie.  I just won't know until I can investigate further.

8.  Check into Weinfeld's post-survey routine.

First up is the panel at University hospital, then figuring out time off of work, then surgery.  Baby steps.  Just like Bob.

This post is dedicated to Joseph Davis.  He lost his mother to cancer yesterday.  I write a lot of words about myself and yet I have none to give him.  In the absence of the right words, I offer these.  Jos, I love you.  I haven't stopped thinking about you since you gave me the news earlier today.  And I will not stop thinking of you.  Betsy put it best when she said you have an ability to handle things in a higher way than we do.  You do.

Through the Grapevine

Round two of chemo is in the bag. 

This time, at least, I didn't terrify my nurse at 3:00am by breaking down in tears.... Instead, when I awoke through the night, I was able to snuggle up to my new best friend, give him a little squeeze, and drift peacefully back to sleep. This ally I speak of, this supporter, giver of light, and companion is a stop-light green button which dispenses morphine.  Oh Morphine Pump, my comrade... how I miss thee.

Morphine Pump and I were introduced shortly after I was delivered back to my room.  My liver's second chemo embolization was complete.  From what I can remember through the pain and drugs, the situation went like this: 

I emerged from the anesthesia.  Shards of searing pain ripped through my abdomen like a high-speed train tearing its way across the terrain, fiery sparks flying from the wheels as they barely retain their grip on the tracks.  I vomited.  Clear liquid filled the forest-green bag they held to my face.  A strange, tingling in my legs could only be construed, in my not-so-cognizant state as, "SOMETHING IS SO SERIOUSLY WRONG I'M BECOMING PARALYZED."  Pain.  I may or may not have been little hysterical.  More pain.  Epic thirst levels. A bright light appeared and I started to walk towards it.  More pain. 

Before I reached the warm, white glow, it was decided a morphine drip would be put in place.  So, I remained, for the time being, a member of Earth.  The chemo (probably) wouldn't have killed me.  But since it was trying it's damnedest to do just that, Morphine Pump intervened and came to my rescue. Insert super hero anthem here.  Round Two of chemo has proven infinitely worse than his predecessor.  MP kept me from doing my best Bond villain and popping the syaniade capsule I hide in my hair.  After round one I napped a little, ate dinner my sister brought to me, read until midnight, tried unsuccessfully to sleep, and went home grumpy in the morning.  Not so much this time.

As Morphine Pump and I became acquainted, I slept straight through the post-procedure hours I must spend lying still so my vein clots.  This was a perk as these hours draaaaaaaaagggggged by the first time.  At the 4-hour mark, I woke up long enough for them to change my bedding as I went to the bathroom.  Another perk of sleeping (or more accurately: being drugged into slumber) through those hours is not having to use the bed pan.... ugh, enough said.  Any time I needed to get up, which wasn't often, it was quite a production.  The odd little pumps on my legs to correct the tingling had to be detached, my oxygen nose piece removed, the IV pole rolled with me, etc.  Another benefit of this round was sleeping.  Anytime I awoke, Morphine Pump was there with a smile to gently chuck me under the chin and guide me back to dreamland.   I could not eat.  At a certain point, my father lovingly told me I was going to eat.  I'd declined all day due to my preoccupation with my current, dismal situation.  A banana seemed like an innocent choice.  One bite and I vomited.  Another forest green bag was filled with clear liquid.  What didn't make it into the bag was promptly whisked away once the nurse was buzzed and my bedding/gown changed... again.  Although it didn't seem like I would, I made it through the night.

My pain medication has unrelenting side effects.  I have yet to figure out how or why people use this drug recreationally.  My post-chemo pain levels were apocalyptic.  Even facing ominous suffering, I hesitated to use the Oxycodone prescribed to me.  This is the alternative to Dilaudid, which I was given the first time around.  I staunchly refuse to take that drug again.  This alternative has proven to be an epic failure on my rating scale of pain meds.  I'm only allowed certain medications that do NOT metabolize in the liver.  Of the three I've experienced so far my rating scale is as such:
BEST PAIN MEDICATION EVER = Morphine.  Ahhh, I have warm-fuzzies just thinking about it.
WORST PAIN MEDICATION EVER = anything else.  I know I'm biased since Morphine Pump and I became so close but I still think this scale is fairly scientific.  So, upon my release from the hospital and an agonizing good-bye with MP, I was forced to use the Oxycodone to attempt to alleviate some of my pain.  And boy was there pain.  Did I have an 'Aliens' situation on my hands where an extraterrestrial being was mutilating my insides as it prepared to claw it's way out of my midriff (click here if you don't know what I'm referencing)?  Did they do the chemo wrong and all of my internal organs were dissolving?  Had I been sawed in half during a magic show gone wrong?  My only hope of some respite from this torment was to pop a pill.  Following this action I would have to find a quite, dark space where I could wait out the incapacitating migraine.  Sleep was my reprieve so I took long naps.  And this is how I passed my days.  Pain, pill, wait out the side effects.  Lather, rinse, repeat.  This medication is a narcotic, the same category shared with meth.  Forget any desire to eat.  Forget the end result of eating as narcotics notoriously cause constipation.  Interestingly, I felt itchy while taking this medication which explains why meth users are always scratching and are riddled with open sores- I was coming close to the same look.  Eventually the pain lessened enough I could just tough it out.  Or perhaps I just decided the pain medication was no longer for me.  I still have pain but no longer take the prescription meds.

Disclaimer: to those who were actually around during these events, if I've misreported them in any way I apologize. I'm merely giving the account as I recall and let's face it, I was crazy with pain and heavily drugged.  I'm not trying to enter into an Oprah vs. James Fray situation so we'll just pretend this is exactly what happened.  Appreciated, Lins 

Following chemo I'm ten years old.  During my harrowing recovery, I regressed to being driven around, cooked for and generally brought anything I needed to remain alive.  I barely had to lift a finger (by doctors orders- I'm not allowed to lift more than 10 pounds for two weeks while the clot in my vein heals.)  And now I no longer know how to be a grown-up.  Where will my next lunch come from?  How do I get water in my cup?  What pj's should I wear to bed?  The Disney Princesses ones?  I agree.