(16-10-22) Perseverance Award

There were days … scratch that, weeks … scratch that, MONTHS … where dealing with my employer literally added to my illness.  The ongoing struggles with Jen, Adam, and HR led to so many additional problems: medication-resistant insomnia, gastrointestinal problems, decreased appetite from stress, increased drinking, crying spells, bouts of hopelessness, nausea and dizzy spells on the way to work, and a growing disinterest in being the best teacher i could be for my students.  Then there were the financial battles for a little while, as my supervisors continually forced me to take whole days off without pay for appointments that would only take an hour from my workday.  On top of that, the staph infection i got there in July led to a 3-month-and-still-going battle with getting a radiation wound to close properly, and this battle even caused me to permanently lose one of my implants.  I never stopped fighting – partly out of principle and partly because i had so many people pushing me to KEEP GOING  – but i will admit this: There were many times i didn’t believe i would win the fight, many times i questioned myself, “What’s the POINT?”

The point is that we should never stop doing what we feel is right and just and ethical.  Yeah, there are consequences to fighting, and sometimes it feels like we lose more than we gain … but we never really know that for sure, do we?  I mean, in the moment, we have no idea what the long-term results are going to be.  We get caught up in the stress and the loss of the moment, but that’s just a small piece of the puzzle of life we are all trying to put together.  Had i given up in the moment, i would not be in this same spot that i’m in now: cancer-free, with a house still being paid for by a job that i still have but don’t even have to go to at this time.  And six other employees at ADJC wouldn’t have gotten their jobs back.  And Governor Ducey wouldn’t be looking into other state agencies like DES, agencies that were pulling the same personnel reform bullshit that ADJC was.  And other state employees wouldn’t be following in my footsteps and taking their unjust firings to the media.  And i wouldn’t have received this awesome plaque at the AZCOPS Convention this weekend, recognizing me for my perseverance, despite a difficult administration.

I’ve been feeling kind of stuck these past few weeks because now it’s time to rebuild my life.  I need to rebuild the lost toning and muscle mass in my body. I need to get my house back in order, now that i have the strength and energy to deal with it.  I need to put myself back on a high-protein health kick to try to help this wound close up.  I need to get back into the “early to bed, early to rise” habit.  I’ll need to return to work soon.  There’s a LOT of rebuilding to do, after a person beats cancer, so much so that it’s overwhelming and leaves me wanting to just spend days in bed not doing anything at all.  But that’s not fighting; that’s not perseverance.  That’s not Tarah.  So… i’m working on it.

(16-10-19) Biologicals

“Now, just so you know, this never happened.”

He says this with such a serious tone that i think he’s serious.  Wait – he *is* serious.

Technically, doctors are not supposed to experiment on their patients with drug samples … but when a professional acquaintance offered my doctor some free donated human allograft tissue, my doctor couldn’t resist.  He took the sample and bumped up my appointment 20 hours; apparently, amniotic fluid from a person’s placenta has a pretty short shelf-life.  They kept it on dry ice until i arrived, and only after i was there … only after my clothes were off, and the needles were brought out, and the vials had been thawed out from being vigorously rubbed between the hands of two nurses … only then did he tell me that (1) “… this never happened” and (2) “This is going to hurt.”

Seriously?

Luckily, I talked him into at least putting Lidocaine on my skin before he inserted the amniotic fluid, and the pain ended up being minimal.  I could feel the needle rummaging around beneath my skin, bumping into scar tissue so heavy that my doctor had to take a break in between vials because it was hurting his hand.  I resisted the urge to crack an inappropriate joke about sexual orientation and hand muscles, and i resisted ANOTHER urge when he said that poking through my scar tissue was like trying to poke wood.

I could feel the needle moving underneath my skin even hours after the procedure.

Hopefully, this helps.  The purpose is to try to reboot my tissue cells into regenerating themselves, as we continue to try to collapse the hole with external pressure.  If you’re confused, trust me: You are not alone.

 

(16-10-17) PET Scan Results

Pet scan was negative – no evidence of cancer!

 

NEXT STEPS:

(1) Get on Dr. Dhillon’s case until he figures out how to fix this open hole in my body (by the way, there are two holes now…).

(2) Take the last three Herceptin infusions: October 27, November 17, and December 8.

(3) Continue taking Tamoxifen (oral medication) for 9.5 more years.

(4) Get PET scans every 6 months for the next 2-3 years.

 

This list is MUCH less overwhelming than it used to be.

(16-10-14) PET Scan

My PET scan is scheduled for Monday morning at 10:00.

I spoke at length with a doctor about what i was allowed to eat the 36 hours leading up to my PET scan: raw nuts, avocado, eggs, green leafy vegetables, raw broccoli, raw cauliflower, and water.  That’s it.

They’ll also be dosing me up with anti-anxiety meds so that my claustrophobic ass doesn’t lose her shit once they put me in that enclosed machine.

~ update to follow ~

(16-10-13) Follow-up with Dr. Dhillon

I kind of expected that Dr. Dhillon would tell me it was time to move on to trying the KCI Vac Machine.  I have spent a week and a half now trapped inside a compression bra that feels like it’s doing a remarkable job of cutting off my circulation but not much else.  I’m annoyed.  The bra is uncomfortable.  The open wound leaks through my gauze and my bandages, and it smells after a day or two.  I’m tired of wearing black underwear every day (‘cuz, you know, i still have to MATCH), and even though the machine sounds terribly inconvenient, i am ready to take the next step.

But there will be no vac machine – at least not yet.  Dr. Dhillon noticed that one small area inside the wound had closed a whopping one centimeter, so he wants to continue down this path of trying to get the tissue to collapse on itself from the pressure of the sports bra and all the crazy padding we added to the cup.  The hole itself got larger, and there was no change in the bottom half of the hole … but that one centimeter in that one section was apparently enough for Dr. Dhillon.  In case you can’t tell, i don’t agree with this reasoning, but what do i know?  I’m just an impatient patient who has spent the last three months with a gaping hole in her chest and is, at this point, willing to do whatever it takes to close this fucker up so that i can move on with my life.

(16-10-10) Intimacy (UPDATED W/LINK)

castphoto

BACK ROW: Katie (sound), Adam, Marion, Monique, Elizabeth, Rohini, me, Matt, Gracie
FRONT ROW: Jessica’s daughter, Jessica, Alicia, Julieanne

Today, i made the 6-hour trek to California, in order to speak at this storytelling event. I didn’t want to do it. Public speaking … standing on a stage … sharing my personal business with a bunch of complete strangers – these are all things i strive to avoid whenever possible. However, i am following through on some promises i made to a friend a couple months ago: Let people in to help when they offer, and say yes when i would rather say no. So… YES, i will stand up on a stage in Palisades, CA and tell 120 strangers a story about my boobs. No problem.

People keep asking me how it went. Honestly, i am not sure. The hours leading up to the event were nerve-wracking. I had three familiar faces in the audience that night, and all three of them were going out of their way to reassure me that everything would be fine. They were sweet. It didn’t help, but i appreciated their efforts. Once the event itself started, i was placed in the delightful position of listening to six of the other seven speakers go first, each time feeling the butterflies in my stomach breed and multiply, fantasizing about their ever-increasing wing power lifting my body right up and out of the theater. It didn’t happen. When the sound tech cued my music (“Conqueror,” from the TV show Empire), i counted three Mississippi’s, choked back my nausea, and walked on stage. I couldn’t tell you if i was loud enough, or if i paused in the right places, or if my speech was still clear in those moments when i purposely sped up. I remember looking out into the audience and seeing pitch blackness all before me, and the next nine minutes were a blur.

Afterwards, a generous handful of people came up to me and congratulated me. I was later told that my discomfort was written all over my face, but i managed to thank each and every one of them for coming, WITHOUT throwing up all over them. No one asked me personal questions relating to my story, which was surprising but a definite relief. When the energy in the reception got too overwhelming for me, Sacha, Megane, and i all dipped out.

The next night, Megane and i were walking down a sidewalk in Santa Monica, on our way to meet Julieanne at some bourgeois hotel for dinner. We were stopped in the street by a man and a womyn. The man asked me, “Are you the lady who spoke at that spoken word event last night?” He proceeded to give me props for having the courage to tell such an impactful story … and while i was totally flustered in the moment, i felt good about it afterwards. I reached some people. My story was heard. This was the point, right?

LINK TO AUDIO RECORDING – http://www.sparkoffrose.com/audio-2016.php#intimacy

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(16-10-09) Race For the Cure

Today, i attended the Susan G. Komen Race for the first time.  Of course, i couldn’t just walk in it like everyone else.  Nope … i had to go big or go home, so i ended up giving a speech, participating in a live interview with Channel 3 News, and then running for half of the 5K walk.  Afterwards, my awesome roommate treated me and her girlfriend to mimosas and protein-filled breakfasts at The Daily Dose, where i ran into an old boss i haven’t seen in at least six years.  He proceeded to straight up tell me that whenever i was ready to go back to teaching at his school, to let him know.  After brunch, i went to The Polish Room to treat my tired, somewhat blistering feet to a pedicure, and the owner handed me a $300 gift certificate on my way out the door.

Yup – today was a splendid day.

One speech down, one to go ….

 

LINK TO THE CHANNEL 3 NEWS VIDEO
http://www.azfamily.com/clip/12799545/race-for-the-cure-steps-off-in-phoenix

 

ROUGH TRANSCRIPT OF MY SPEECH
(I was told not to bring the speech or notecards up with me but instead to have a conversation with the audience … so i’m sure i deviated from this draft at least a couple of times.)

I was the little girl who, at the age of 3, already drove my mother crazy because i insisted on picking out my own outfits – every day.

I was the adolescent who left home at 17 to go to college in a state 989 miles away.

I was the college graduate who moved clear across the country to teach in Arizona, a state where i had no family or friends.

I was the teacher whom Teach for America assigned to take on the most difficult job position open that year: a self-contained classroom for middle-school students with emotional and behavioral disorders.

I was the womyn who made national headlines when I was fired from Imagine Schools for refusing to remove bumper stickers on my car.

I am self-confident.  I am unbreakable.  Always have been, always will be.

 

And then i got cancer.

 

I approached my diagnosis the same way i approach everything else in life – head on.  Confidently.  With strength.

The day I received confirmation that I really did have breast cancer, I drove right from my doctor’s office to ASU Gammage Theatre, where I watched the Book of Mormon Broadway musical with a friend, never giving the slightest indication that I had just received devastating news that would impact the rest of my life.

When I had my double mastectomy, I refused to let anyone know which hospital I was at, and I didn’t even tell my parents about the procedure until I was about to be released.

I drove myself to most of my medical appointments – as many as six in a week.

I stayed on top of all the paperwork constantly being requested by two insurance companies, three hospitals, eight medical offices, and my employer.

I kept a smile on my face when in my classroom, teaching my students.

I started a blog, to keep my family and friends across the country updated.

I educated myself on every step of my cancer treatment – mastectomy, chemotherapy, radiation, hormone therapy, and reconstruction.

I did all the things that i assumed any competent, strong, and confident adult would do.  Plus, I was getting all the “normal” types of help.

  • United Healthcare enrolled me in a resource program for cancer patients.
  • The Cancer Support Community of Arizona provided me with free Zumba, free make-up tutorials for when I would lose my hair, and free cooking classes to help address my affected appetite and new nutritional needs.
  • My dad flew all the way across the country just to spend a week with me during one of my chemotherapy sessions.
  • My coworkers kept my classroom disinfected, subbed for me when i was too sick to teach, and wore pink paraphernalia every Monday in solidarity.
  • Cancer survivors crawled out of the woodwork to validate and encourage me at random times, on random days – my favorite instance being 8-year-old Mia Bryant, a brain cancer survivor who came up to me at a restaurant one day to bond with me over finishing chemotherapy and getting our hair to grow back.
  • And my friends … geezus, I could spend this entire day talking about the H.E.A.L. fundraising event they spent three months prepping for, and the cards they sent me weekly, and the outings they took me on when I was weak, and the presents … so many presents.

That’s fine, universe – give me cancer.  Not only will I annihilate it, but I will be a stronger and better person afterwards.  Stronger Tarah. Count me in.  

 

… but even when i was doing everything i thought i was supposed to do, there were things that still weren’t working out.  So the real truth is this: Cancer chipped away at my strength and confidence ANYWAY.  It happened little by little, in such small doses that I didn’t even notice at first.

 

  • One of my chemotherapy sessions got delayed, after my white blood cell count dipped too low.  CHIP
  • I lost my hair, my skin turned yellow, and my muscle mass deteriorated from being too weak to keep up any sort of gym regimen.  CHIP CHIP CHIP
  • My girlfriend – the one who got me to change my mind and agree to traditional cancer treatment in the first place, the one who promised to stay with me every step of the way, changed her mind two months in. CHIP
  • My incisions from my mastectomy surgery split open – twice.  CHIP CHIP
  • Radiation caused so much skin damage that it led to staph infection and unforeseen medical complications.  CHIP CHIP
  • My health insurance decided that one of my hospitalizations wasn’t “medically necessary,” so they sent me a $21,000 bill.  CHIP
  • Three surgeries in a row didn’t work, and i lost the right implant completely.  CHIP CHIP CHIP.  CHIP

 

And then one thing happened that officially broke me: I got fired.

The staph infection and the multiple hospitalizations kept me out of work even after i ran out of sick days.  My employer had the option of letting me stay employed on a “Leave Without Pay” status until i was medically cleared to return to work.

Instead, they decided to let me go.

Suddenly, I felt my strength fall in puddles beneath my feet.

Gone was the job I had been at for five years, a place where I had won an award for my teaching and where I had the highest scores from state evaluators for three years in a row.

Gone was my income.

Gone was the health insurance that was paying for all my cancer treatment.

Gone was my retirement plan.

Gone was my confidence.

Gone was my fighting.

Gone was my strength.

It’s easy to believe in your own strength when most things are going your way… but when everything around you crumbles, you start to see the depth of your own strength … and I am not as strong as I thought I was.

 

Luckily, a whole city decided to rise up together and keep fighting *for* me.

It started with advice from a lawyer: “The quickest way to get your job back is to shame them.”

It continued with validation from an AZ Republic reporter, Craig Harris.  My interview with him was a game-changer – privately and publicly.  Up until now, I had the support all around me; so many of my coworkers, friends, and family knew that how I was being treated was cruel and callous.  So I had the support; I just didn’t have any POWER.

Craig handed me that power.

He shared my story.  The videos and articles started trending.  Thousands of people all across the country were watching, responding, offering to help, and contacting the governor’s office to request intervention.  A GoFundMe account was established; it raised over $6,000 in a matter of days.  And only two days later, I found myself lying in a hospital bed talking to a representative from the governor’s office, and i was listening to him tell me words i almost wouldn’t let myself believe.

“You have been completely reinstated to your position, retroactive to August 8.  When you are ready to come back to work, please let me know, and i will make the appropriate arrangements.  In the meantime, please only worry about getting healthy.”

 

It really did take a whole village to raise up this one child.  Systems are just systems, and sometimes they don’t work out for us … and that’s why it is so crucial for us as people to pay attention, get involved, use more of our time to help others, and stand up to fight injustice.  After all, not everyone gets rescued like i did … but what if they COULD?

 

 

 

 

(16-10-01) Susan G. Komen Event

In eight days, i will be joining thousands of other people to walk and/or run through the designated streets of downtown Phoenix, raising awareness and funding for breast cancer.

Earlier this week, my T-shirts and participant numbers arrived in the mail.  It was a bittersweet moment.  I was excited to be receiving a pink shirt that recognizes me as a “survivor” … and then i realized i am not sure if that is actually true.  Back when i signed up for the race, i checked the box on the form that identified me as a survivor.  At the time, i had just finished with radiation, and i had no idea whether the cancer cells were completely gone; i decided to check the box anyway, thinking to myself, “By the time this race comes around, i’ll know for sure whether the cancer is still here.  If it’s not, i’ll wear the pink shirt; if it is, i’ll wear the white.”  I was supposed to be able to get a PET scan in late July, to check on the status of the cancer cells.  And then the incisions split open … and the wound got infected with staph … and i was hospitalized three times … and now here it is, three months later, and i still can’t get the PET scan because i am still dealing with this open wound.  Yeah, yeah, i know – i’m supposed to be working on my patience.

Then something else about the T-shirts hit me.  9,048.  The white shirt came attached with Participant #9048.  That’s a lot of effin people.  Did i mention that i will be speaking before the race starts?  Um…yeah.  A spokesperson for the Susan G. Komen Foundation contacted me two weeks ago and asked me if i would be one of three speakers at the event.  I agreed to write an 8-minute personal story about how my experience ties into the importance of community involvement.  AT the time, i was NOT aware that over 9,000 people had signed up to walk/run in this event … not sure i would have agreed had i known that, but it’s too late now!  Tomorrow i meet with Meghan Finnerty, a professional storyteller and AZ Republic journalist, who will help me fine tune the draft i wrote.  An audience of thousands … professional writers critiquing my work … no pressure there, right?