#RadiationCountdown

 

As Day 1 of radiation grew closer, friends, co-workers, and my school community made sure to surround me with love…. so much love.

This WAS prickly pear jelly….. thank you, Steph and Wally. YUM!

Tuesday, Sept 11, 2018

#1/20 radiation treatment!

Whole appointment was about 70 minutes long. Actual radiation treatment part was about 12-15 minutes. Once a week (or more, if needed) will be long like this one because they’ll do lots of imaging. There are CT images taken every day before treatment to make sure I am lined up correctly for the radiation and to just check to make sure nothing is too different from the day before. Tuesdays will be my “Doctor Day” which means I’ll see my radiation oncologist after the imaging and treatment, which adds another 20 – 30 minutes. Today we were there for just short of 2 hours. Oncologist feels the severe breast pain I’m still experiencing is likely related to my fibromyalgia. Staying on increased nerve medication.

My type of radiation therapy is called VMAT: Volumetric Arc Therapy.  VMAT delivers radiation on a linear accelerator using a cone beam that continuously rotates around the patient. Each rotation is called an arc and one or more arcs might be used. During each rotation, the cone beam is continuously shaped (or modulated) by the multi-leaf collimator. In addition, the dose rate (how much radiation delivered for each second) and gantry speed (how fast the beam rotates) are also optimized to generate highly conformal dose distributions. The radiation is delivered to the intended area only, allowing the radiation oncologist to spare more of the surrounding healthy tissue. Both VAMT and IMRT (Intensity Modulated Radio Therapy) are equally effective for normal tissue sparing. However, the treatment time for VMAT is significantly shorter, thus VMAT benefits patients who require longer (30 minutes or more) treatment time.   https://radiationoncology.weillcornell.org/clinical-services-and-technologies/external-beam-radiation-therapy/vmat

If you look closely at the photo on the far right, you’ll see part of a breathing tube. For this type of radiation and imaging, I used a breathing tube (with nose clips) to keep my chest and body still while taking images and delivering the radiation. A still body allows for a more precise radiation dosage to my breast (partial breast radiation therapy). The breathing tube is like a snorkle – I have to bite down on the the inside of it to hold it in place, then I have to make a tight seal around the outside. When directed by my radiation therapists (who are in another room), I push a button (called the “panic button” – which is kind of opposite because if I panic, I let go of the button, instead of push it), then I take a deep breath and when I have a taken a deep enough breath (measured by the machine, a spirometer – if you’ve ever been tested for asthma, you have used a spirometer), then the valve shuts (quickly!) and I hold my breath. I hold my breath either until they tell me to breath and the valve opens, or until I can’t hold any more and I let go of the button. If I let go of the button and stop holding my breath, the machine stops the imaging or the radiation (whichever is happening at the time).  I am attempting to hold my breath for anywhere from 15 to 40 seconds…. we’ll see how I do. I am kind of worried about this set-up because of my asthma and my vocal cord dysfunction, and because I hold all my stress and anxiety in my jaw and neck area…. kind of concerned.

While doing this, I am lying on my back with my right arm (affected side) up over my head in a pretty unnatural position and my head is lying on a metal headrest bar, tilted to the left at, again, a pretty unnatural position. Day 1 ended with quite the nasty headache from the stress on my head, neck, and jaw. Hope it gets better.

 

It’s a good thing I’m in the right place….. be a shame if I showed up at a “Low Radiation Area”.

The robe made me feel like a “prize fighter” ….. “‘gonna knock you out, cancer!”

 

I have such a desire to write a blog post, or two, or three – but no freakin’ energy. Must sleep.
Thanks for all the support, friends. 1 down, 19 to go.

Wednesday, Sept 12, 2018

#2/20  Radiation Countdown Continues ….

 

….feeling overwhelmed
… on my bed….. insane headache #2 on day #2.
Another 60 min plus session. The breathing technique and the angle and pressure on my arm, neck, and head are tough. My sweet guy surprised me and met me there before treatment….. and sat in the waiting room the whole time…. just to give me a kiss before and after. ❤
Got kinda woozy from the headache while driving home and had to pull over for a few minutes. Ugh. Now, lying down feeling like crap.

 Thank you, Annette for the reminder to just keep riding on.

 

 

 

 

Thursday, Sept 13, 2018

#3/20

Cried thru treatment today. Sigh. Still counts, though…. 3 down, 17 to go.

Friday, Sept 14, 2018

#4/20 Feeling optimistic!

Apparently this cream is THE STUFF to use during radiation….. thankful to the women who’ve shared this important, hard-earned knowledge. 

Other than fatigue, my most persistent side effect so far is being insanely short of breath…. and now, a cough. A lot of coughs. Damn.
Honestly, thought side effects would wait a week or so…..

 

 

Saturday, Sept 15, 2018

Saturday, otherwise known as Napper-Day.                                                                        Overwhelmed by the love. I now have special, love-filled notes to open on each day of my treatment. All the way from Pennsylvania!
Thanks, Ceci, Lincoln, Andrew, and Cathleen.
💜❤💜❤

Monday, Sept 17, 2018

#5/20  Loved my “radiation vacation” this weekend – gotta get back to it today.

Long, (65+min on the table) rough session today. Radiation therapists joked I must’ve put my skin on crooked today – they had difficulty getting everything lined up correctly.  We did three full sets of images (each taking about 8-10 minutes) before getting everything right. Had to wait for the physicist and then the radiation oncologist to check things out. Had to get up and start all over before it finally was correct. I am grateful to the therapists for being so patient, knowledgeable, and precise. My head, on the other hand, was not happy to be in that position on that metal bar for all that time.  I started with a regular headache (daily now) and ended with a monstrous headache.
Thankfully, we were able to finish and treatment still counts.

Tuesday, Sept 18, 2018

#6/20 Really tired this morning. The lillies from Lily keep blooming – they are stunning…. I gotta keep blooming.

 

Thank you, Holly.  ❤💜  You were my good luck charm this afternoon – my shortest treatment time so far!! I love you and am so very grateful for our 17 years of friendship.   Radiation oncologist suggested today that I start taking anti-anxiety meds to help  reduce headaches and stress during my treatments. Sigh. This means I will need drivers to and from treatment now. 

Wednesday, Sept 19, 2018

#7/20 A gift of a new day!  I keep getting new days!  Thanks, Kathy and Rachel for the flowers and the goodies!

 

#7/20 I seem to be making a habit of really nasty headaches following treatment. Short of breath and nasty cough this evening, too. Rest is good. Grateful for patient and supportive co-workers and so much love from my school community.

 

Thursday, Sept 20, 2018

#8/20  Intense cough and shortness of breath, so I’m taking a rest day from school. Radiation treatment later this afternoon.

 

Napped, napped more, showered, coughed through treatment (but apparently kept in place on the table – still counts!), headache (again), more napping. Talking triggers the coughing – grrr, been here, done that before. And now, I am supposed to add cough suppression medication before treatments…. will make me even more sleepy. Now, I really need drivers.

Friday, Sept 21, 2018

#9/20  Sean, Rosemary, Cole, and Issac….. THANK YOU for coming to play today!! I LOVE you for the sweet and silly visit! ❤❤❤  (I’d post the video of them playing in the gym but then I’d have to $pay$ for this blog site…. don’t want to have to pay!)

Saturday, Sept 22, 2018

In the almost 3 years we’ve lived in this house, the rose bush has only ever blossomed cream-colored roses…… this morning I go out, and there are PINK roses. Are you kidding me? Even my rose bushes are Kickin’ Cancer’s Ass!

 

#whyididntreport – This has nothing to do with my radiation treatments, but it does have to do with what’s going on in our country right now… and it affects our state of mind, our emotions, and our ability to function in the midst of the insanity. I am sharing these again, because it matters.

#whyididntreport….

• Because, in college, I wasn’t a slut, and I didn’t want to be called one.
• Because in my younger, family life when it happened and no one listened or did anything except protect him, it “trained” me to accept that. So, when it happened in college, I made the same choice to just “let it go” and move on. I did not need the label “slut” added to the other things most of my sorority sisters thought of me because I had to work 30+ hours a week and because I didn’t have the family money most of them had.
• Because I needed to get away, stay away, and create and live a life that didn’t include him.
• Because I didn’t want my beloved, incredible, amazing friends – friends I still have today, 40+ years later – to think less of me. Think less of ME? Of ME? How crazy is that? But that’s what our culture has done to women and girls.
• Because no one ever believes girls and women anyway.
• Because when I told the people who were supposed to protect me, they protected him instead. What good would it do to tell anyone else?
• Because he beat the crap out of me for no good reason. What in the world might he have done had I told?
• Because, to this day, I fear he will kill me.

Sunday, Sept 23, 2018

(morning) Yesterday, Saturday,  I had good energy, felt good, stayed awake …. Toby and I took a long walk. It was a nice day.
Today, I feel completely crappy.

(late afternoon) Crappy day turned wonderful ….  I took myself for a pedicure at Vivi’s, a Deluxe +plus extra massage……. kind, attentive, caring pedicurist (who also happens to be a single mom who has her honors BS in BioChemistry and is awaiting her admission to PA school!) took a teary-eyed, tired, anxious Paula and tender-loving-cared me into a happy, relaxed Paula! I even got lady bug big toes! Plus, a lovely 4 year old preschooler sat next to me for about 20 minutes and we chatted about life in preschool, big sister love (she has an “itty bitty baby sister” at home), and her incredible flower toenails! Came back home a complete 180 from when I dragged myself out the door.

Monday, Sept 24, 2018

GOOD MORNING!!
#10/20 radiation treatments – as of this afternoon, I should be halfway!

#10/20 HALFWAY!!!! I can do this!
Thank you to my sweet smart friend Kay who drove me today, visited with me, and lovingly reached out to another patient – the people we come across in our lives – there are clearly reasons we are where we are.

Tuesday, Sept 25, 2018

One of those days…. I just “couldn’t” today…. couldn’t wake up, couldn’t get going, couldn’t get headache to go away, couldn’t find my appetite, couldn’t do anything except sleep. I even showered and got dressed for school – then fell back asleep. After calling school, I slept another 4-1/2 hours.

Probably would still be in bed if I didn’t have to be here.
I miss my kiddos.

#11/20, plus the Simulation for my “boost” treatments starting next Tuesday. Simulation, also called a “planning session” is when the radiation therapists and physicists map out the area to be treated. Treatment planning usually involves positioning your body, making marks on your skin, and taking imaging scans. The radiation therapy team determines whether you’ll lie on your back, stomach or side during treatment. It’s crucial to find a position that optimizes your treatment, but is comfortable enough to hold for 15 to 45 minutes. A variety of immobilizers may be used to ensure you’ll be in the same position for each radiation therapy treatment.  (https://www.mayoclinic.org/diseases-conditions/cancer/multimedia/radiation-therapy/sls-20076358) Lucky for me, my final 5 treatments – “boost” treatments – do NOT involve a snorkle!

Wednesday, Sept 26, 2018

#12/20  Another PT appointment with lymphedema specialist and then on to treatment. My PT specialist is phenomenal …. she is a certified yoga instructor, as well as a mulit-certified physical therapist. She “gets” me and she offers great relief to my swelling and nerve pain.                                                                                                                                  Thanks to my sweet friend Terry, for the ride this afternoon! I meant to get a selfie with my lovely friend… darn! 

Thursday, Sept 27, 2018

Another pink rose blooming. Day started off well – excited for a break from radiation today and for the chance to see all my Thursday students!

I wasn’t sure I would make the whole day at school, … but I really wanted to.
By first recess I was pretty beat, and by lunch I was done. Sigh.
Came home, then I slept.  A lot.
I’ll try again tomorrow.  

 

Thank you to everyone who is loving me through this. 

Friday, Sept 28, 2018

#13/20   Trying again! A new day, a new chance to spend time doing what I love – teaching.

#13/20  Today was another pretty emotional treatment …. for lots of reasons. I cried (big surprise). I was blessed to watch and cheer for a fellow breast cancer patient as she “rang the bell”, signaling the end of her treatments. We met passing each other in the dressing area over the past few weeks – mainly saying “hey” in passing, but Monday we hugged, along with my friend Kay, as she cried and shared her worries, frustrations and pain. I was so happy to get to witness her bell ringing. Then, a few minutes later as I lay on the table, the tears started flowing. Several other reasons swirling through my heart and head this afternoon as I cried…. but, treatment still counts no matter how many tears you shed. 

I found out this afternoon that I am no longer eligible for our district’s short term disability plan – Sick Leave Bank – meaning almost all the leave I have used so far this school year (almost 9 full days at this point, plus more to come) will be unpaid leave. The reason why I am not eligible is because I have exhausted the district’s career allowance for paid benefits. I have used Sick Leave Bank 4 times over the length of my 27 years with APS. This is pretty much all proof of what happens when you :  a) are one of the inaugural members of Sick Leave Bank (25 years ago), b) have a long-ass career (27th year) with the same district, and 3) are a survivor of a LOT of hard, life altering experiences.  I am very grateful to have been able to access these benefits over the years. Very grateful. The next few paychecks will be pretty much decimated – but, this too shall pass. Everyone keeps telling me – “it’s just money”….. sigh. It is, that’s true. It’ll be okay – as I’ve learned over the last several years, especially the last few months – there are definitely worse things.

Why the pink boob cupcakes, you ask? I’m pretty sure I have discovered the reason for all the “pink” surrounding breast cancer….. yeah, yeah, yeah – breast cancer mainly strikes females and pink is symbolic for females. Whatever. I think I know the real reason: because radiation causes our breasts and nipples to turn pink – really, really pink.

One of my radiation therapists at MD Anderson Rust, Brandon, knows I like to listen to Michael Jackson during treatment. We can’t crank it up like I’d like because I have to be able to hear them tell me to take those damn breaths and hold – but it’s loud enough. I was rather teary and emotional this afternoon. He started Michael for me and I don’t even remember the first songs that played during imaging, but as soon as we started the radiation treatment, “Beat It” came on. Have you ever really listened to the words? Well, as I was holding my breath and the tears were running down my face, I listened to the words. Really listened.

They told him don’t you ever come around here
Don’t want to see your face, you better disappear
The fire’s in their eyes and their words are really clear
So beat it, just beat it

You better run, you better do what you can
Don’t want to see no blood, don’t be a macho man
You want to be tough, better do what you can
So beat it, but you want to be bad

Just beat it, beat it, beat it, beat it
No one wants to be defeated
Showin’ how funky and strong is your fight
It doesn’t matter who’s wrong or right
Just beat it, beat it
Just beat it, beat it
Just beat it, beat it
Just beat it, beat it

They’re out to get you, better leave while you can
Don’t want to be a boy, you want to be a man
You want to stay alive, better do what you can
So beat it, just beat it

You have to show them that you’re really not scared
You’re playin’ with your life, this ain’t no truth or dare
They’ll kick you, then they beat you,
Then they’ll tell you it’s fair
So beat it, but you want to be bad

Just beat it, beat it, beat it, beat it
No one wants to be defeated
Showin’ how funky and strong is your fight
It doesn’t matter who’s wrong or right
Just beat it, beat it
Beat it, beat it, beat it

Saturday, Sept 29, 2018

I made a new friend through an online support group for folks with breast cancer, Ladies of Light. She is a fierce survivor. Fierce! This is from her:

I just wanted to thank Donna Marlow Contreras and my Blissful Spirits family for the amazing fundraiser we had today. Our Blissful family raised $1100 today for Making Strides Against Breast Cancer. My heart is so full of gratitude and love!! Our sculpt class was amazing today, the energy was so positive and so strong!! Why were you on your mat today?? I was on my mat for my mom, for Paula Jackson, for those fighting breast cancer right now and for myself!! I am a survivor, I am a voice, and I will make a difference!! Thank you to all of you who supported our fundraiser!! Much love to you all! 🧘🏼‍♀️💕💪🏻🤟🏼💖✌🏼

 

Monday, Oct 1, 2018

#14/20
October.
The “pink” month. You’ll see “pink” everywhere – ribbons, posters, sports jerseys and athletic socks, footballs, pink hair bows, arm bands, caps, bandanas, coffee mugs, tote bags, t-shirts……….
It’s really not about the “pink”.
It’s about the fight, and the will to survive this beast and to live more, laugh more, love more. So much more.
It’s about remembering and honoring those who didn’t survive their fight, those whom we love more and more at the same time we dearly miss their laugh and desperately long to feel their love.
“Pink” is cool. I’ve always loved the color pink. I’ve always loved how I look in the color “pink”.                                                                                                                                                   It’s always just been a color.                                                                                                           I’ll never look at “pink” the same way again ….. I’m sure of that. 

Thank you, Kay for my radiation rides!!

#feelinthelove

Thanks, Kay for the ride again today…..  And, thanks to everyone who has been sending me all the incredible cards. I am definitely #feelinthelove ♥

Tuesday, Oct 2, 2018

#15/20  Made it thru my lunch recess duty today…. I was experiencing pretty intense breast pain. I needed to take stronger meds to help the pain ….. so, I’ve come home for a bit to rest before treatment.

#15/20 Done with that damn snorkel and nose clips!! Woo!! Hoo!! It’s my last view of the linear accelerator at this particular angle. Radiation oncologist isn’t overly concerned about the pain… he thinks it’s still my fibromyalgia continuing to cause problems, and he wants me to keep taking the pain meds to my tolerance.  Thank you to my kind friend Bev for the radiation ride…. again!

Thank you, Bev for the radiation ride… again!

My final view from this angle!

One of my radiation therapists at MD Anderson.. they are amazing!

THANK GOODNESS I am DONE with this stinking snorkle!

 

Wednesday, Oct 3, 2018

Bone Density Scan – Very SOLID results! (haha)  ….. excellent bone density in pelvis, vertebrae, and hips. Yay!  No radiation treatment today….. love my little “radiation vacations”!

Thursday, October 4, 2018

#16/20   Today started out rough – I felt like total crud this morning: horrible headache, raw and sore throat, serious cough, and very froggy-almost-gone voice. I opted to stay home and sleep….. must have been the right choice because I slept until 12 noon! Around 2:30 this afternoon, my headache seemed to be calming down. Thanks to Terry Storch (again) for the ride to treatment and the lovely conversation that really helped pull me out of today’s slump. And now, only 4 more to go!!

Today’s “boost” was so quick and easy compared the all the previous treatments….. wow!

Friday, October 5, 2018

#17/20 ….Only 3 more treatments…. goodness. I made it all day today until I left for treatment – the first day in a while I have stayed so long at school with my students. It was wonderful!  Happy weekend, everyone. Happy Balloon Fiesta, Abq peeps! Thanks to my sweet Sean for radiation rides the last 3 Fridays.  

Saturday, October 6, 2018

“At times, our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.” – Albert Schweitzer

Thank you, Roni. 💗💗

I spent a wonderful day with excellent educators doing excellent educator things! (I’m even using excellent words to describe my excellent experience with excellent educators!) I am full of deep gratitude.

 

 

Sunday, Oct 7, 2018

I finally retrieved the mail from the mail box today – 3 days’ worth of mail….. and it was so worth it…..  thanks, Kassidi! ♥

“To let go means to give up coercing, resisting, or struggling, in exchange for something more powerful and wholesome which comes out of allowing things to be as they are without getting caught up in your attraction to or rejection of them.”         – “Wherever You Go, There You Are”

Monday, Oct 8, 2018

#18/20   Happy Birthday, Katie!!! 25 years ago you made me a “mama”….. best job I’ve ever had!

#18/20

Voice – gone.                                                                                                                                      Throat – raw and scratchy.                                                                                                        Sinuses – yucky.                                                                                                                              Fever – low grade.                                                                                                                                Ugh. Stayed home, in bed, and slept.

Slept until time for treatment….. only 3 to go.

Tuesday, Oct 9, 2018

#19/20

I made it through the whole day until it was time to leave for treatment. Pretty tired, but it felt really good to be at school and be with my students.

And now, I only have ONE MORE TREATMENT remaining!!

Wednesday, Oct 10, 2018

#20/20     An early morning – it was very tough to get out of bed this morning, I felt like complete and total crap – but, it was International Walk and Roll to School Day and I had kiddos and volunteers counting on me. So, after sitting on the edge of my bed for 15 minutes doing my best to find the energy to merely stand up, I showered, dressed, and drove to school. I am so very grateful to all our volunteers, plus two Monte Vista colleagues, who showed up and helped make this fun morning happen. This afternoon was also our World Hoop Day @Monte Vista….. by lunch recess I had found some energy and had fun hula hooping with my silly students. Yes, that’s a green tutu! If you know me, you won’t be even one bit surprised!

Came home after school to finish my gifts for the staff and radiation therapists at the cancer center. When I’ve had the energy, I’ve been baking for them… pumpkin bread, cookies…. and this time, cupcake “boobs”. I’m not sure I even have the words to express how I feel toward these people – they have helped save my life. They have been kind, generous, smart, and professional in the most compassionate way. I have been greeted by name every single time I have walked into the cancer center after the first appointment. They have been gentle, they have given me hugs when I didn’t even know I needed them, tissues when it was very apparent that I needed them, and laughter at the best times. They have been knowledgeable in every way I needed, and in so many ways I didn’t even know existed. They have taught me.

And, they have saved me.

So, a bunch of strawberry and chocolate “boobie” cupcakes seemed like the least I could do! hahaha   Not all boobs are “pink”, ya know?  Not sure if they ended up looking like “boobies”….. but they sure did taste good!

I did it! The final treatment is done! And, yes…. I cried like a big baby.  In case you’re wondering…. the stickers were for treatment alignment. For awhile I had blue “x” stickers, then blue and green, and then just the green.

And now, no stickers at all! None! Cause I am done!

Remember the bell ringing? Well, today it was MY TURN to ring that bell!

And to prove that I am done, here is the evidence of all those message board numbers : 20-19-18-17-16-15-14-13-12-11-10-9-8-7-6-5-4-3-2-1 and DONE!

Thank you everyone for all your love, friendship, and continuing compassion….. not sure I could have made it through these treatments without you…. ALL of you.  ♥

Next step in treatment is starting Letrozole – the aromatase inhibitor, hormone suppression medication. I start that right away tomorrow – I’m really hoping it’s an easy ride. We’ll see……

…. but for now, I’m going to continue to celebrate the fact that I made it through all my radiation treatments! Woo! Hoo! ♥

Beat It!

One of my radiation therapists at MD Anderson Rust, Brandon, knows I like to listen to Michael Jackson during treatment. We can’t crank it up like I’d like because I have to be able to hear them tell me to take those damn breaths and hold – but it’s loud enough. This past Friday I was rather teary and emotional. He started Michael for me and I don’t even remember the first songs that played during imaging, but as soon as we started the radiation treatment, “Beat It” came on.

Have you ever really listened to the words? Well, as I was holding my breath and the tears were running down my face, I listened to the words. Really listened.

They told him don’t you ever come around here
Don’t want to see your face, you better disappear
The fire’s in their eyes and their words are really clear
So beat it, just beat it
You better run, you better do what you can
Don’t want to see no blood, don’t be a macho man
You want to be tough, better do what you can
So beat it, but you want to be bad
Just beat it, beat it, beat it, beat it
No one wants to be defeated
Showin’ how funky and strong is your fight
It doesn’t matter who’s wrong or right
Just beat it, beat it
Just beat it, beat it
Just beat it, beat it
Just beat it, beat it
They’re out to get you, better leave while you can
Don’t want to be a boy, you want to be a man
You want to stay alive, better do what you can
So beat it, just beat it
You have to show them that you’re really not scared
You’re playin’ with your life, this ain’t no truth or dare
They’ll kick you, then they beat you,
Then they’ll tell you it’s fair
So beat it, but you want to be bad
Just beat it, beat it, beat it, beat it
No one wants to be defeated
Showin’ how funky and strong is your fight
It doesn’t matter who’s wrong or right
Just beat it, beat it, beat it, beat it
No one wants to be defeated
Just beat it, beat it
Beat it, beat it, beat it

Thank you, Michael. ♥

Time to Catch Up, Part 1

 

It was not my intention to go 28 days between blog posts. Of course, it wasn’t my intention to get cancer, either – –  as Mick Jagger sings,        “You can’t always get what you want…”

 

So much has happened over the past 28 days – when I think about it all, it makes sense why I haven’t had (made?) time to blog more often. If you are my friend on Facebook, then you have likely kept up with stuff going on and, for the rest of you, I’m going to do my best to bring you up to speed here …….

• Wednesday, August 29

TEEDLER! RERISER! RERERISER! REBOING! SNOOPZILLA! Scrabble with Toby, Sean, Asher, and Rosemary – more fun than I had had in a long time. A LONG time!! I laughed so much! It was a dose of much-needed medicine…. especially because the two hooligans were headed off within the next few days (Sean to Germany) and the next week (Asher to Japan).  And, … I beat Sean! He claims he was “off his game due to the shenanigans!” Who cares?! I won! But mostly? I laughed my silly ass off! I love these people. ♥

• Thursday and Friday, August 30, 31

Radiation Oncology Fun at MD Anderson Rust! Looong appointment on Thursday to talk and learn about radiation options, plans, procedures, side effects, and get blood work done, schedule bone scan, etc.  Also we were surprised – SURPRISE! – by being told my simulation appointment was the very next day, right smack dab in the middle of the day, making going to work in the morning or the afternoon (including the time spent driving back and forth across town) not really feasible. So, another day missing school. (I’m making a frown face – you can’t see it, but believe me, it’s there.) Yes. I could have requested it be changed – but it would then delay starting my radiation treatments by at least a whole week, and frankly, we were ready to get this party started. Friday was my Simulation appointment – which included lots and lots of CT imaging, Sharpie “X’s” marking the spots on my breast, node area, and torso to line up the linear accelerator beams, and answering my twenty million questions – all so my team of radiation therapists and physicists could get my individualized “set-up” prepared. Then, over the next 11 days, the physicists would get to work on completing my very precise radiation plan using VMAT – Volumetric Modulated Arc radioTherapy (more about that in Time to Catch Up, Part 2).  That appointment was informative – but stressful, if I’m being completely honest. Very scary to think we would be purposely exposing myself to that much radiation…. I mean, I am a sunscreen nutso – just ask my children! And here I am, doing this. On purpose. Very. Stressful. Indeed. And, yes, duh, I cried.

• Friday night… right as we were getting ready to head to bed, August 31

DING! DONG! SURPRISE!!! Katie surprised us at 10:15 pm … she flew in from Missoula – complete and total surprise!! ……CRAZY! and INCREDIBLE! and AMAZING! While she was in school 4 hours away at NMSU,  she surprised us a few times like that…. just unlocked the front door and walked in on a Friday night like all was normal and watched us all freak out just a little bit with pure joy. As the door was being unlocked, Sean and Toby and I would be looking at each other and counting like, wait….. we’re all here, aren’t we?? I had just been thinking earlier this week that her sweet surprise visits would probably never happen again – I mean, she’s married, she’s teaching and working and attending school, she lives in freaking Montana! BAM! She proves me wrong again! ♥ The mama love I felt was huge as I heard her tell Sean, “You didn’t think I was gonna let you leave for a whole year to Europe without saying ‘goodbye’, did you?” ♥

 

Katie’s Home!!! HUGE surprise at 10:15 pm on Friday, August 31.

Pedicure girly time with my girl!

 

• Sunday, September 2

Bon Voyage, Sean! We love you and are so excited for you and your Germany adventure…. 11 months studying at the University of Heidelberg. Big deal for this young man – he hasn’t flown in more than 5 years, has never traveled on his own, and has never been out of the country…… he’s done his research, prepared as much as possible, and now it was time to send him on his way. Desperately going to miss him, but so very thrilled for all he’s going to learn.

Off he goes! We love you! It’s gonna be a long 11 months for this mama!

After saying goodbye to Sean, we now had a few days of “bonus time” with Katie!

• Monday, September 3

Sean arrives safely in Frankfurt, Germany…. let the games begin! Some day – when you really want some hysterical story telling – ask Sean about his adventures navigating his way from Frankfurt – the 3rd busiest airport/train station in Europe to his student residence in Heidelberg. And, remember – the only train station experience he had prior to this journey were the Rail Runner stations in Albuquerque and Santa Fe.

 

 

Compare that to the Frankfurt Airport/Train Station….

     Hmmmmmm…… kind of a culture shock!

 

• Tuesday, September 4

Katie left the 90 degree, sunny warmth of Albuquerque and returned to Missoula’s wet, rainy 60 degrees. (A week earlier – before the end of August – Montana received it’s first snow!) I missed her as soon as she walked into the Sunport. ♥

• Week of September 4 – 7

The week continued with tons and tons of texting, WhatsApp-ing, and phone calls with  Sean – and, since Germany is 8 hours ahead of Albuquerque, most of that was during our late night hours or the wee hours of the morning…. making for a tired and worried mama and papa. Mostly though, a very stressed Sean, as it turned out the exchange program at the University of Heidelberg was not a good match for him. It “felt wrong” to him pretty much from the beginning. Then, add in the the SURPRISE of finding out about additional, rather large financial responsibilities that no one made us aware of – not the UNM GEO office, nor University of Heidelberg. As stressful as it was for Sean, we were very proud of him for deciding the correct choice for him was to come back home – cutting his 11 month journey to 8 days. It was his choice whether to return or not – we’d do our best to help figure out the financial stuff if he wanted to stay – but as it had been his choice to go to Germany, it was also his choice to return. We trust him to trust his own gut. As parents, we needed to trust his feelings. If we forced him to stay or tried to talk him out of it, then all we would have been doing was teaching him to not trust his own gut. And that would be just wrong. Sometimes all we have is our “gut”…. we have to learn to listen to it and trust it. And, as happens some times in life, if our “gut” is wrong, well, then – we learn a lesson then, as well. We’ve been very lucky – they’ve always had really good instincts and we’ve been able to trust our children…. not all parents can say that.

At school, as I was still dealing with severe breast pain, headaches, and low energy – all exacerbated by my fibromyalgia, I was getting prepared for radiation to start the following week, and was doing my best to get our after school enrichment program of 10 classes off and running for the semester. I am the coordinator of the after school program and usually also teach a class or two ….. not this semester. I wisely decided to take a break from running any classes or clubs this semester – the coordinator position will keep me busy enough …. pretty sure I was going to need naps a lot more than needing to be at school a couple of extra hours each day.  I also wanted to get as many of my ducks in a row as I could before beginning my 20 radiation treatments on September 11 ….. class schedules rearranged, daily radiation appointments set, additional appointments and procedures scheduled, substitutes arranged, and lessons planned.  And, I had offered to read and score some last minute Golden Apple applications. And the best way to deal with all of that?

Scoodle Play!

• Sunday, September 9 at 11:15 pm

Frankfurt to Manchester, free night’s accommodations at airport!

Manchester to JFK, free tour of BUSY airport!

JFK to Abq….. home.

Sean is now back home in Albuquerque. He is working out the details with UNM as to whether he will be deferring the whole semester or attending second 8-week classes. Luckily, Stone Age told him when he left they would be happy to welcome him back when he returned from Germany…. they just thought it would be next August, not the following week!

And, as Mick continues to sing, “….  you find you get what you need.” Apparently,          I needed:

• Scrabble silliness with my lovely crowd
• to be SURPRISED by Katie at least one more time
• to help prepare Sean as much as I could for his journey and spend as much time with him as possible
• to let Sean leave
• to let go of “have to’s” and truly enjoy our BONUS time with Katie
• to be there for Sean at whatever time he needed to talk or text to figure out an insane train station or to figure out why or how to get back to Albuquerque – no matter the time of day or night…. that’s what mamas do.
• to get my AfterSchool Rocks! ready to rock and roll for the semester
• to get my schedule at school as ready as possible
• to be inspired by some shiny Golden Apple applicants
• to get “radiation ready”

 

Time to Catch Up, Part 2…… coming soon!  ♥

 

 

 

 

A Decision Made, Another Tumor Board, and a Garage Door!

A Decision:

I decided to go with traditional External Whole Breast Irradiation instead of Accelerated Partial Breast Irradiation with SAVI (APBI). From the first appointment with my radiation oncologist, APBI with SAVI was presented as a really great, easier, quicker option if I qualified. I did qualify – but, the more we learned about the process, combined with the increased pain and swelling I was having from surgery led us to realize it was NOT the greater, easier, quicker option for me.  A sweet friend who has survived her own hellish battle with breast cancer reminded me that just because I COULD “tough it out” didn’t mean I HAD to. Very wise words that in a way, gave me permission to make a better decision for myself instead of the one I “felt” my doctor wanted. Although, to be fair, my radiation oncologist did chime in that in light of the severe pain and swelling I had been having, he did suggest the SAVI might be too painful for me. He and the radiation techs answered a multitude of questions that day and I remembered thinking how “difficult” the process seemed, yet at the same time telling myself silently “I can do this. I can be tough. I can make it.”  (Very typical responses for a trauma victim, apparently. My therapist was quite pleased with the tremendous decision I was able to make by not taking the toughest route. She felt that was a monumental moment for reasons other than the decision itself. Yay me.) Well, SAVI was not for me. I am grateful I had the choice but I am REALLY grateful to my close confidantes who took the time to remind me I didn’t “have to” be tough (cancer is tough enough by itself!) and that just because the “accelerated path” is good for some women – it did not sound like a good idea for me.

Not for me:

• One or more incision(s) for the insertion of the device (I really do not want anyone else cutting into me right now!…. My surgeon, being worried about my pain, even suggested doing the device insertion in a surgical procedure instead of in the office – she was that concerned about my current pain and causing new pain … but then she was worried about how poorly I do with operations and that she’d likely be introducing 3 or 4 additional problems in her effort to reduce the intensity of one different issue.)
• MORE pain and more pain medication (standard treatment includes full doses of pain meds to help patients mange the constant discomfort and … well, pain.)
• SAVI device inserted into my tumor cavity along with the continually growing amount of fluid (seroma) in the cavity…. and the fluid would have to stay in the cavity ALONG WITH the device…… ouch! The fluid was causing so much pain on its own, I couldn’t imagine something ELSE being inserted into that space!
• SAVI device partially inside my body and partially hanging out….. for 10 days…. oh joy.
• Very large gauze dressing covering the outer part of the SAVI, under my arm in an area that was still hurting beyond belief…. uh, nope…. did I mention it would be for 10 days?
• 2 treatments a day for 5 days; including scans and adjustments of the device (adjustments = potential pain and/or increased meds)
• At least 1 course of antibiotics (increased risk of infection due to incision and a foreign device being inserted into my body… duh.)
• 10 days without a shower. (ugh. Yes. I’m a spoiled, privileged, American.)
• 10 days with very little movement (in an effort to keep the device in position because re-positioning causes well, pain.).
• Strong potential of headaches, neck, shoulder, and back pain from limiting movement (my headaches are infamous for being rather ugly.)
• Potential of doing almost all of this, not being able to complete it, and then still having to do the External Breast Radiation anyway. (sigh)
• Missing 8 full days of school ( which would use up ALMOST ALL of my paid sick leave for the school year before the first month is even over!)
• https://www.verywellhealth.com/savi-breast-brachytherapy-device-430391
• https://www.ciannamedical.com/savi/for-women/

What I Chose Instead:

• Whole Breast Irradiation, accelerated  https://www.breastcancer.org/research-news/accelerated-whole-breast-radiation-new-standard
• External Whole Breast Radiation   https://www.breastcancer.org/treatment/radiation/types/ext
• My treatment will likely be “accelerated”. Instead of the traditional 33 courses of treatment (treatments/days), I will have 15 to 21 treatments but with the same amount of radiation (accelerated dosage). Same amount of radiation over a shorter amount of time.
• I might not have to miss any school at all. I likely will…. but it’s not automatic that I will miss… it will depend on how I am feeling.
• 1 treatment a day. Late afternoon, only have to adjust 2 out of 42 classes each week,  for 3 to 5 weeks.
• No one is cutting into me.
• I won’t have a device hanging out of me. Isn’t that a goal for all of us, really?
• Did I say no one will be cutting into me??
• When I made the decision to go with the traditional External Whole Breast Radiation, a huge amount of stress was released. I felt better. No, I’m not overjoyed about the idea of doing radiation – but this option just felt better for me.
• Did I say no one will be cutting into me??

Another Tumor Board:

Last week, I found out my Oncotype dx score is “14”.  https://www.oncotypeiq.com/en-US  A “14” is in the low-intermediate range.  Prior to June 3, 2018 – yep just about 3 months ago – a “14” would have meant chemotherapy treatments (especially considering my high Ki-67 score of 56.8). What happened on June 3?

First, here’s a little bit about the Oncotype Dx test:

The Breast Recurrence Score test is a genomic test—it looks at the activity of tumor genes. Specifically, the test measures the activity of a group of cancer-related genes in your tumor tissue. The activity of these genes can provide information about how your tumor might behave in the future, including how likely it is to grow and spread or whether it is likely to respond to chemotherapy (in addition to hormonal therapy).

After the test, you’ll get a score between 0-100. A low score means the cancer has a lower chance of returning and you have a lower chance of benefiting from chemotherapy. A high score means the cancer has a higher chance of returning and you have a higher chance of benefiting from chemotherapy. Learn more about the test results.  (Currently, 0 – 10 is considered a “low” score. 11 – 25 is “intermediate”, and 26 – 100 is regarded as “high”.)

To date, the Breast Recurrence Score test has been ordered in over 850,000 patients. Many women who received high Recurrence Score results were able to choose chemotherapy as a potentially life-saving treatment. The majority of women with low Recurrence Score results were able to effectively pursue hormonal therapy and avoid the unnecessary side effects of chemotherapy.

Several studies have consistently proven that only the Breast Recurrence Score test can predict whether you will benefit from chemotherapy. Therefore, the Breast Recurrence Score test can help you and your physician tailor a treatment plan specifically for you.

On June 3, 2018 the results of the TAILORx clinical trial was released.   http://www.ascopost.com/News/58904

https://www.cancer.gov/news-events/press-releases/2018/tailorx-breast-cancer-chemotherapy

The federally funded, phase III TAILORx clinical trial showed that most women with hormone receptor (HR)–positive, HER2-negative, axillary node–negative early-stage breast cancer and a mid-range score on a 21-tumor gene expression assay (Oncotype DX^® Breast Recurrence Score) do not need chemotherapy after surgery. The study found no improvement in disease-free survival when chemotherapy was added to hormone therapy in this group, which accounts for about two-thirds of women who participated in the trial. The findings will have an immediate impact on clinical practice, sparing thousands of women the side effects of chemotherapy.

The TAILORx trial enrolled 10,273 women with hormone receptor–positive, HER2-negative, axillary node–negative breast cancer—the most common type of breast cancer. Of them, 6,711 had a mid-range recurrence score of between 11 and 25 and were randomly assigned to receive hormone therapy alone or hormone therapy and chemotherapy.

According to the authors, the findings suggest that chemotherapy may be spared in:

• All women older than 50 years with hormone receptor–positive, HER2-negative, node-negative breast cancer and a Recurrence Score of 0 to 25 (about 85% of women with breast cancer in this age group)  (This is me.)
• All women 50 years or younger with hormone receptor–positive, HER2-negative, node-negative breast cancer and a Recurrence Score of 0 to 15 (about 40% of women with breast cancer in this age group).

The primary endpoint was disease-free survival, defined as recurrence of cancer in the breast, regional lymph nodes, and/or distant organs; a second primary cancer in the opposite breast or another organ; or death from any cause.

Another cool thing about the TAILORx study?

It was funded, in part, by proceeds from breast cancer stamps. Since the stamp made its first appearance in 1998, it has helped raise more than $86 million for breast cancer research, according to the US Postal Service.

The stamp was also the first in the US to be sold at a surcharge in order to raise funds for a specific cause, the Associated Press reported, and its role in funding the TAILORx was critical. The initial $4.5 million of the cancer institute’s $36 million contribution — came from the stamp, said Dina Singer, who is involved in the institute’s use of stamp proceeds. The money was used to pay for the gene test, which costs more than $4,000 per person. FYI: I have been buying those stamps – A LOT OF THOSE STAMPS – since they were first released in 1998. Have you ever bought them? Apparently, A LOT of people have! If you have – THANK YOU!! Makes me think of what I tell my students about bringing fruit for Jog-a-Thon….. “If everyone brings a little, then we’ll have A LOT!”

Seems clear, right? No chemo for me. Yay.

Not so quick. Apparently, according to my oncologist, my age of barely-55 is really, really close to 50 for the purposes of these results, and in the big picture as compared to women in their 70’s or older. Also, I still have that really high Ki-67 score which means my breast cancer is a Luminal B cancer, which can often have a better longterm overall survival rate (OS) when treated with endocrine therapy AND chemotherapy. (Some studies have shown an 11% increase in OS if both chemo and endocrine therapy are added to radiation, as opposed to just chemo and radiation  or just endocrine therapy and radiation. To be fair, a lot of Luminal B cancers have other more aggressive factors than my cancer does and a lot of women with Luminal B cancers are younger than me. All good things to remember and consider.) So, it makes it not quite so clear. At least not to me.  Oncologists in the US don’t really use the Ki-67 score on its own for treatment decisions anymore. The oncotype dx has become the gold standard in the US for my type of breast cancer. The oncotype dx test includes Ki-67, but doesn’t rely solely on that score. Plus, the Ki-67 test has 3 different ways of being calculated – which can result in different results. So, it makes sense that oncologists don’t use it on its own anymore to develop treatment plans.

At least doctors in the US don’t use it on its own anymore. In Europe; however, it’s a different story apparently. Since the majority of healthcare in Europe is offered through “Universal Healthcare”, most women with breast cancer do not have the oncotype dx test performed unless they can pay for it themselves because the oncotype dx test is quite expensive. My Ki-67 score of 56.8 in Europe would mean chemo for sure.

You are probably thinking right now that I have spent WAAAAAY too much time reading about breast cancer, genomic tests, treatment options, etc, etc, etc on the internet…. and, you might be right. But, also, most of the time it helps me make sense of this thing that really doesn’t make any sense. And, before I get “too invested” in a study or something I’ve read, I do pass it by one of my docs  – find out if the study is reliable, current enough, and if I’m interpreting it correctly. Often, I have been on the right track. Sometimes, I’m not seeing the whole picture. Which, makes sense – I’m not an oncologist!

All that being said, my medical oncologist (MO) was also thinking that based on age, Ki-67 score, low-intermediate oncotype dx score, tumor size being almost 2 cm, luminal b category – that he would like to present my numbers and case to the Tumor Board again and see what their recommendations are for treatment: chemo, radiation, then endocrine therapy OR radiation then endocrine therapy? He asked me what I thought about my case going to Tumor Board again, I told him I thought that was a great idea. It’s not that I WANT to do chemo…. no one WANTS to do chemo, are you kidding me? But, I also don’t want to die. I don’t want a stage 4 metastatic recurrence.

Honestly, I don’t want any of this shit, but I’ve got it. So – I’m just trying to make sure we do everything we can that makes sense to us, to me, for us, for me.

You might be asking, then why not just do the chemo? Well, good question. Because chemo has a whole set of potential horrible side effects of its own to consider – many of which are worse than the breast cancer itself. And, factor in that both of my parents had terrible side effects to chemo. My father died from pneumonia and septicemia – brought on by 5 chemotherapy treatments for lymphoma. My mother was on methotrexate (a chemotherapeutic drug used widely for rheumatoid arthritis ) for almost 2 years during a clinical trial with Baylor School of Medicine. While she was on it, she literally went bat-shit crazy. Literally. (We also had an actual flying bat get into the house during that time – I was a teenager and it came in through the attic while the drop ladder was down – she went freaking BAT SHIT CRAZY trying to kill that bat with my Chris Everett wooden tennis racket.) She was taken off the medication after trying to kill herself. So…… I could maybe have a genetic predisposition to not doing so well on chemo. Who knows. Like I said, I don’t WANT to do chemo….. but neither did my friend who died this summer or my friend who died a few years ago – both from breast cancers very similar to mine and both who did not do chemo in the beginning, and both who had stage 4 metastatic recurrences within 2 years of initial diagnosis and both who died within a year after that. I don’t want that either. Of course, neither did they. No one does. My oncotype dx reports gave me a 2.5% chance of better outcome if I did chemo + hormone therapy than if I did hormone therapy alone. The margin of error is about 1.75% to almost 10%. had to think about that, as well.

So, my MO (Medical Oncologist, remember? Pay attention – there may be a test…. you don’t know… I mean I AM a teacher!) is presenting my case at a second Tumor Board at MD Anderson Rust tomorrow morning to get about 8 other “second opinions” from other oncologists and pathologists. We have decided to go with their recommendation. If they say “no chemo, radiation only” – then we schedule radiation. If they say, “chemo, then radiation”, then we start talking chemo. And then, we keep moving forward.

 

A Garage Door:

When I found out I had breast cancer, I had a friend who had been through it and she warned me about being distracted while driving. Honestly, I did have a few times the first few weeks where I caught myself with my mind wandering while driving. One time I sat at a green light longer than was necessary, because, well… it was a green light…. I like the color green. The second time (which was a bit more worrisome), I caught myself going only about 30 mph on the freeway….. just mind wandering, speed getting slower and slower. Um, not good.

Well, last week, I caught myself as I rolled s-l-o-w-l-y into one of our garage doors. Geez. Yep. Just rolled right into it. I’m okay and rental car is okay. The garage door and my pride are not. I had a hell of a headache and was just relieved to be home and in my driveway. I had no reason to doubt I had put the car in “park” – I mean, don’t I always put the car in “park” when I stop in my driveway? (Okay, so there was that other time about 8 years ago involving steroids, Wendy’s french fries, and the corner of our house by the garage door… but we’re not talking about that day, okay.) I placed my hands in my lap, lowered my head, closed my eyes and just breathed. I really did have an awful headache and wanted to just “be” before I got out into the sunshine.

Guess I was gonna “BE” surprised.

Guess what I didn’t know was that I had put the car into that weird 1st gear at the bottom of the gear shift, instead of “park” at the top of the gear shift. I heard a crunching noise and looked up and thought, “What? Where am I? Is that the garage door? Huh?”

Yep. I thought ALL of that BEFORE I thought to put my foot on the brake. My brain was truly in another place. Apparently, it’s fairly common for people going through cancer. MANY, MANY people on the support group feeds relayed their own stories of driver-dysfunction during this time. Oh well. I guess when Robert Frost said, “The only way out is through”… he didn’t mean literally through the garage door.

It was just a garage door, I am thankful for that. It can be repaired. I now, however, must be prepared for years and years of teasing from my family…… from where I sit right now – years and years of anything, including teasing from my family and friends, sounds just wonderful to me. ♥

 

Please Stop Telling Me to Not Worry About School.

This is my 34th year of doing what I love – teaching. Telling me to not worry or think about school is a waste of your sweet breath and energy. It ain’t gonna happen. If I didn’t love teaching, you can damn well be assured I would not still be doing it.

However, I will promise you that I will take breaks when I need to and if I have to take a whole day off, a few days, a week or more away from school to make sure I kill this freaking cancer, I will. If I need to retire to survive this cancer, I will.

But, I will not stop thinking about,  planning for, wondering about, and caring for my students and my school. It’s kind of not possible. If you truly know me, you know that’s the truth of it. I’ve been “teaching” in one way or another since I was 8 years old. I’ve been looking out for my students and working to help them make their lives better for most of my life. I’m not just gonna stop because I was diagnosed with cancer. And, it’s not a “control” thing. I got over the “control” part of it when my parents were ill and passed away and I was gone for almost the whole semester. I had no choice – I could barely get out of bed after my mother died, let alone make it to school or plan a lesson. I totally let go and the world kept turning and everyone survived – including me. In fact, I survived because I let go.

Letting go then made it easier to let go later, two years ago, when I had my three hip surgeries in one school year and missed 14 weeks of teaching. Again, I let go and the world kept turning, life went on, children were taught and kept safe, and we all survived – including me. In fact, I healed and am stronger now because I let go.

So, please trust me when I say I am able to let go when I must. I will let go when I must. When it’s time. I know cancer is serious. Trust me, I know. I feel the weight of it every day. I have felt the weight of it every day since my father died. His official cause of death was pneumonia and sepsis, which were a result of his immune system being completely thrashed by the chemotherapy treatments meant to kill his lymphoma. I feel the weight of it every day when I remember students I have known, loved, and lost to cancer. I feel the weight of it when my heart grieves for friends of my own or for friends and family of those I love who have struggled and fought their own battles. Cancer sucks. And, cancer is serious. I know. Believe me, I know.

Teaching is serious business, too. Just ask a teacher. I have a blast teaching. I do. But just because I have fun doesn’t mean I don’t take it seriously. The last few years I have made a serious choice to continue teaching, not being quite ready to retire. I’m still not ready to retire and that’s why I haven’t – even in the face of cancer. I feel I still have children to love, hope to offer,  joy to share, and lessons to learn.

Until then, thank you. Thank you for caring about me so much. Thank you for your compassion and acts of kindness. Thank you for wanting me to take care of myself. Thank you for checking in with me at every opportunity, for feeding us, for sending cards and messages. Thank you for trusting that I am taking care, that Toby is taking care, that I am taking time, that we are paying attention.

But, please know that no matter how many times you ask me, I will not stop worrying and thinking about school. ♥

 

 

I’m Pretty Pissed.

Yesterday, the anger hit. Hard.

Since the day of my biopsy 6 weeks ago, I have felt sadness, frustration, confusion, fear, physical pain, and loneliness – but I don’t think I felt anger until yesterday. I am pissed. Like, really, really mad. I don’t like to be mad. I know there are plenty of reasons in the world to be mad (just glance north to DC or south to our borders or right here in Abq to a certain judge) – but anger just feels too dark and too ugly to me. It takes me back to the fear I often felt as a child and adolescent; to the violent anger I witnessed between my brothers, the hurtful rage between my parents, and the pure evil my oldest brother demonstrated toward all of us – for years. I don’t like going “there”….. and one way to avoid that “place” is by sidestepping anger as much as possible. I do feel angry every once in a while, but not very often and not very deeply and not for very long. I have learned breathing and meditation techniques and have worked many years with therapists to learn how to not let the fear and anger overwhelm me.  I try to use strategies I’ve learned to direct the anger into action – proactive and cooperative tasks and goals which help transform the anger into something much less angry and much more productive.

Yesterday – I felt angry. Very angry. Along with all those other feelings – sadness, confusion, frustration, fear, physical pain, and loneliness…… mix them all together and you get about 3-1/2 hours of the deepest, ugliest, snottiest cry ever.

I am ever grateful to modern technology – 3 different phone calls and 5 crucial texts – helped me to finally catch my breath for good and calm down. Katie, Kassidi, Annette, Hanna, Jenny, and Toby – thank you.

Yesterday afternoon we went to High Resolution for an ultrasound and the sequel,  “Aspirating Fluid from My Breast – Part II”. Thankfully, Shannon – my own personal sonographer! – was there again in an all-important co-starring role. (Just barely! Poor thing had just returned from lunch where she fell smack dab on the concrete on both her knees and her scanning hand. She was clearly in pain, but didn’t want anyone else to be with me. ♥ ) Dr. Lewis aspirated 19 cc’s this time – less fluid collected over a longer period of days – which is good. (In my opinion, no fluid over an indefinite amount of time would be better, but I guess I’m not there yet.) The problem is when it fills up, it really starts hurting. Last night, when the lidocaine wore off it was extremely painful. Apparently some women – over a period of several months – have to go in every week to two weeks to have fluid removed. (Oh joy.) She also checked out my underarm area where my sentinel node had been removed during surgery. The pain has increased greatly over the last week and my mobility in that arm has decreased. My upper arm has been slightly swollen, underarm arm pretty puffy and very tender to any touch or movement, and my forearm and hand have been hurting – all beginning signs of lymphedema. Are you kidding me? I only had one node removed and a lumpectomy – not a full mastectomy, not several nodes. I’m not supposed to be having all this shit!  (https://www.breastcancer.org/treatment/lymphedema) There was fluid deep down in the node area but the radiologist felt getting the fluid out at this time was not worth the great deal of pain it would cause, seeing as how she could barely touch the area without me squirming in apparent discomfort. She did, however, immediately call my breast surgeon. (Last week, at the appointment with my breast surgeon, Dr. Bishop said, “See ya’ next year!” because she thought we were done for now with her specialty. Sigh.) By the time we got home, my surgeon’s office called with an appointment scheduled for next week (so much for next year), plus a referral to see a lymphedema specialist. I called them to schedule and the standard of care is 8 appointments, twice a week for 4 weeks, starting on Monday.

I think that’s what pushed me over the edge.

Believe me, I know how lucky and privileged I am to have insurance and to have all these specialists available to me. I know, truly I do. 99.99% of the time, I am hyper-aware of all of the privilege I am carrying with me through this cancer journey. I also wish everyone else who needed it had access to all of this care at the time they are in need – it just doesn’t seem right or humane to me. But, that’s for another blog for another time, I think.

I looked at my calendar and just got overwhelmed. 8 more appointments on top of everything else. And, my remaining treatments haven’t even been scheduled yet! Of course, none of these appointments care that I teach 200 children a day, 5 days a week. None of these appointments are available before 8 am or after 4 pm. In July, I could go to any appointment at any time  – I was on break. I knew this time would come, but I kept thinking, “I’ll deal with now now… thinking too far ahead makes me too anxious.” Well, now that future is my “now” and I am very anxious. (did that make any sense at all?) And angry.

It’s not a “Why me?” kind of mad – honestly, it’s not. I don’t care “Why me?’…. honestly,  I mean, “Why anybody?” Nobody deserves this. I even feel that way about somebody who had been smoking for 50 or 60 years who gets lung cancer. Yes, there’s a pretty clear reason why but I still wish that person didn’t have to have cancer. I’m not trying to “Why me?” my way out of it, …. I’m just mad.

I just wanna teach. I just wanna go to yoga and go on walks with Toby and my dogs. I want to play and go hiking and kayaking with Toby and friends, work in our yard, garden, ride my bike, and just be joyfully active doing all those things right now; and instead, I’m having to deal with this stupid-ass shit. And it pisses me off beyond belief.

Katie, Kassidi, Annette, Hanna, Jenny, and Toby all assured me this evening it’s okay for me to be so angry. In fact, it’s healthy. It means I’m fighting. So , I’m going to try and be okay with it when it hits. I’m going to do my best to remember their words of comfort and encouragement and reassurance. It’s all such a fucking inconvenience – I mean, really, it is, damn it.  I just want to be tired because it’s the first week of school with students – not tired because my breast and my arm hurt like hell or tired because I just had to have another giant-ass needle stuck in my breast and 19 cc’s of fluid drawn out of it. I don’t want to be tired because I get these insanely horrible shooting, jabbing pains in my breast and down my arm and in my armpit area over and over and over, and I don’t wanna be tired because I have to take huge doses of nerve medicine which knock me out and make it impossible to do freaking anything because I’m so damn tired. I’m just pissed. And, I haven’t even started the hard stuff yet! I mean, what the hell – really…… I still have radiation and probably chemo to go through. Oh, and then, the sweet joys of the endocrine therapy medications. (note the sarcasm)

And, I’m really mad because this is bringing up issues of other past traumas and I don’t want that shit coming up right now – I have enough to fucking deal with. I had a nightmare last week about my oldest brother, the one who abused and beat, tortured and traumatized me and my whole family for many years. I haven’t had a dream or nightmare about him in almost 2 years – it was just awful.  I’m sure it’s the “appearance” of the cancer making me think about him “reappearing” in my life – but damn, it sucks.

Kassidi reached out at a cosmically “perfect” time, yet again…. I am so grateful to her for listening to the wretched cries and sobs. Annette – who I haven’t texted with or talked to in a few weeks – just happened to text at just the right time last evening, with just the right words. Katie made me laugh and let me cry as she and Adam made their dinner far away in Montana – and all I wanted was to be there with them in person. Hanna chimed in with a cheery text right as I was plummeting, and in her brilliant and youthful wisdom reminded me that crying is not always a weakness but a sign of strength. Jenny and I played phone and text tag until finally connecting and talking for over an hour about the absurdities of this damn cancer. And Toby, he came when I called. He left the river and came home. To me. He held me and stroked my head while I sobbed and yelled and let the anger burst out of me.

And, then – I slept. Deeply. (yes, medicated… duh, have you not been paying attention?) And I woke feeling grateful for another day, another chance, more moments. Even though there are going to be more moments of anger, I’m grateful. I’m certain there will be more of them but I know more than anything, there will millions of moments of joy and gratitude, laughter and love, fun and friendship, peace and abundance. There will be so many more moments of those than of anger.

Like today, when I got home, I received my first “Blue Bag” from The Foye Belle Foundation. ( https://foyebelle.org/ )  If you haven’t heard of The Foye Belle Foundation, I urge you to go to their web site and check it out. Maybe donate money, possibly donate time, maybe even request a “Blue Bag” be sent to someone you know who is on this journey.

“The concept is really neat. Whenever you’re feeling blue, you pull out your bag and enjoy….and I hope they will make you feel a little less blue.”   Yep….. And, that’s exactly what happened today when I opened the Priority package…… I saw the Blue Bag, I pulled out the lavender polka dot socks and the Burt’s Bees lotions, and the ginger tea…. and I felt less blue.  I pulled out colored pencils, a blanket, some books and I felt less blue. I tell ‘ya – the universe is kind of amazing how it just keeps delivering the support I don’t even realize I need….. booby-sized ice packs, peaches, peaches and more peaches (yum!), good humans being good to me, oils rubbed on my neck and ridiculous jokes in the nurse’s office, flowers, steak and potatoes, someone to sit with Toby where no one has sat with him before, homes on the beach in Del Mar, hugs from children, a quilt made of “sea glass”, “cancer sucks” cards (because IT DOES!), phone calls at the most incredible time, laughter (often at myself!), hugs, permission to be angry, more permission to be angry, and lavender polka dot socks!

Not feeling very angry right now. Feeling blown away by the love and ready to keep on keepin’ on.  ♥

 

Abundance

This. Right here. Abundance.

An abundance of abundance, in fact.

I am feeling it. Cards and postcards continue to arrive in the mail – yes! real, live mail in the mailbox (incredible!), phone messages fill my voicemail daily, Facebook and Instagram messages ping me often throughout the days, visitors come to hug and chat with me… or talk quietly with Toby if I am sleeping, my colleagues at school were generously compassionate, helpful, and gentle with me at each and every turn this week, flowers bloom and change in their vases, green lovely succulents thrive in the sunshine … and the delicious meals arrive without hesitation every other day. Toby and Sean are especially thrilled with the meals! ( https://www.mealtrain.com/trains/5ymenz )

Thursday brought a tough doctor’s appointment and continued swelling and pain, lots of tears and a little bit of anger, two cards and a postcard in the mail (yay!), multiple texts and messages from Katie and other lovely folks in my tribe, chatty, relaxing visits from two dear friends, another yummy meal for Toby and Sean (including brownies!), this luscious lil’ pot of succulents, and two very long, really important, heart-affirming phone calls with women who mean a great deal to me. An abundance of abundance. ♥

And also yesterday, this quilt arrived. At the most perfect time.

Honestly, the timing was what I would call universal perfection. (A “God thing”, karmic vibrancy, beautiful coincidence, synchronicity, grace …… whatever you wish to call it.) And the quilt itself is perfection, as well. My sweet, funny, smart, loving, brave friend Kassidi started working on this as soon as I told her my diagnosis. She is a 5+ year survivor of a brutal, harsh breast cancer and we became friends as she was jumping, hopping, leaping back into the world post-treatment as Toby’s co-PE teacher at Maggie Cordova Elementary School in Rio Rancho.

She had asked my favorite colors last month – I remember wondering which artistic piece of joy she would share with me (she is a brilliant artist), but to be honest – as time went on, I completely forgot about it. My brain became filled with so much….. so much noise. I told her blues and greens… always been my faves. She was drawn to these “sea glass” colors of blues and greens, even though she kept thinking the colors should be brighter, bolder, and more vibrant (like me, she said. ♥ ) But, she “listened” to her inner voice (as well as her cool-as-heck daughter!) and went with the “sea glass” blues and greens, and even included the lavender – which also has a the-universe-is-connecting-us-even-more aspect to it. For her, though, she still wasn’t sure why she was being pulled in this way.

And then, she stumbled upon this quote:

“Cancer has shaped me like sea glass. Broken me, worn me down, but polished me in a way I could never achieve on my own. Shined me to a luminescence amidst stormy moments through unchartered waters and as I strive to wash up on the shore of some unknown destination I know the truth lies more in the journey than upon the grains of sand.” -Unknown

And, the answers became crystal sea glass clear, if I may – to her.

Well, the “sea glass” colors were the. most. perfect. choice. Perfect. Even the calming white – as soon as I began to pull it out of the box and saw the cool white fabric, a sense of calm and peace came over me. I hand’t even seen the front yet – and my heart was full.

See, all I really wanted to do this past summer was go to the beach. That’s really all I wanted to make happen – a visit to the beach. Pacific or Atlantic – I didn’t care. I was craving the waves, the beach, the sounds and the smells, the feel of my feet sinking into the wet sand as the waves wash over them and those crazy bubbles pop around my ankles. I wanted to walk and walk and walk. Collect shells and, yes – sea glass. I had talked about it to Toby since spring and we were in the process of making some plans (can’t rush this stuff) when cancer interrupted our summer.

I am still craving the sea – but, now, I have this calming, beautiful “sea glass” quilt to wrap myself in and breathe. And, cry. And, laugh. And, feel so loved. It makes a difference. A perfect difference.

The universal perfection part of this story continues …. Toby and I had just returned from an appointment and CT scan with my radiation oncologist and we had a decision to make. I had cried – like, the freaking ugly cry – almost all the way home from the appointment. I quieted a bit as Toby and I sat in the car in the driveway and talked. No decision was made and didn’t even need to be made right away. I, however, was so troubled by yet another decision that felt as heavy as life and death itself. We came in to the house and there was the package from Kassidi. The card she chose, the letter she wrote, the quilt itself – it was all so wonderful to receive. More tears – but this time, tears of abundance.

Toby returned to school and I went downstairs to rest; but instead of sleeping, decided to call Kassidi. I had texted her – but really, a text was just not enough. We spoke for almost 2 hours – about a lot of things – but she said a few things that really rang true. Things that opened my heart to myself. Things that helped release me from the expectations of this decision. It was simple, really. But folks like me, and Kassidi, and many women I know – are driven to always “push through” and to “tough it out” no matter what. A variety of reasons and experiences have led us to this drive; and sometimes, it serves us well. Sometimes, it only serves to make us work harder than we need to, suffer more than we have to, and expend energy worrying much more deeply than is healthy about our impact on those around us.

Instead of just listening to that voice. That voice in our hearts, or our heads, or even in our dreams and nightmares – it’s that voice we often shove down and purposely ignore because it seems to go so against the grain of that “drive” that often serves us so effectively. Kassidi reminded me of the value of listening to that voice. She echoed exactly what that voice was gently whispering to me but that I was pushing down and shutting out because I’m “supposed” to “push through” and “tough it out”. She gave me permission to listen to that voice.

And, if she hadn’t made that perfect quilt and it hadn’t arrived at the perfect time, I might still be struggling instead of listening.

See, I told you it arrived at the most perfect time. ♥

It’s Been A Month: Some Good News, Not-Sure News, 24cc, More Sleep ZZzzzz, and a Frozen Boob!

When I started this blog last month, I told myself I really wanted to post about every 3 to 4 days to keep people up and current and to keep engaged and not dwelling in depression… I did not want to have days and days in-between posts… of course, I really did not want o have cancer, either, but we all see how that turned out?! Anyway, it’s been 9 days since I posted last  – oops! I’d say it’s been a busy 9 days – and it has, sort of – but mainly it’s been 9 days of absolutely no energy and TONS of sleep.

Monday, July 30: Started having these incredibly painful – 20 on a scale of 0 to 10 – jabbing pains in my right breast (the one that had just had lumpectomy surgery, thankfully! If it had been the other one, Toby might have had to take me to the “other” kind of hospital!) I mean, “punch-you-in-your-gut”, “take-your-freakin’-breath-away” kind of pains…. just out of nowhere…. that would jab in different spots all around my breast for 20 to 60 minutes. And then, stop. Of course, by that time, my head would be about to explode again in a headache of major proportions, the nausea would be taking over, and I would be even more wiped out than I was when they began. By Monday morning, I had decided to start reducing the controlled prescription meds – Tramadol. (Side note (remember, highly distractible here! – I cannot take anything with real or synthetic codeine or morphine. Even filling the prescriptions would likely cause me severe headaches, nausea, vomiting – it’s not a pretty sight, I promise you.) Toby suggested going back to full dosage with Tramadol, but I was pretty certain my headaches were still so bad because of the Tramadol so I didn’t want to increase the dosage – I wanted my headaches to go away.These insane pains went on all day. My relief of choice? Ice packs. Really frozen, completely frigid, constantly rotating ice packs. And, some tylenol.

Tuesday, July 31: Called the breast surgeon to report the crazy jabbing breast pains – I figured it was likely nerve pain, but I wasn’t sure and I needed to be told what to do because the pain was really quite bad. Surgeon called back, listened, and told me she thought it probably was nerve pain but she was also concerned there might be fluid build-up that could be causing the intensity to be so severe. She told me I’d go to High Resolution the next day for an ultrasound and, if necessary, they would drain fluid from the area; although, she was hopeful that wouldn’t need to be done and that it was just nerve pain. We joked about how when it comes to the abundance of nerves in breast tissue, it’s all fun and games until someone brings out the scalpel! She added that she wanted me to “go back” to what I was doing 24 hours after surgery: full dosage of Tramadol, add in Tylenol and Advil round the clock, tons of water, full and complete rest, icing. I told her I hadn’t really been doing anything at all; like I wasn’t going shopping or out hiking or to yoga – she asked if I had taken a shower, I answered “yes” and she said, “See… you have been doing something!” Ha Ha Ha  So, on Tuesday we started back to full dosage of Tramadol, adding in Tylenol, Advil every 4 to 6 hours, plus all my other fibromyalgia and anxiety meds. (Side note: Over the last 6 months of being back to yoga, I had almost completely stopped any anxiety meds…. I’m not counting CBD oil in that, CBD oil is just like a daily multi-vitamin, right?)  Breast cancer has a way of bringing those lovely anxiety meds right smack dab back into your life again!  In-between bouts of jabbing breast pain, I slept. Or, had diarrhea. Or, was throwing up. Yep…. I sure do know how to have fun during my last week of summer break!

Ordered these from Amazon during one of my awake times: Perfect, booby-sized ice-packs!

 

 

Wednesday, August 1: Ultrasound to check for fluid. Sounds like I’m taking my car in to the shop…. “Fluid: Check! ”  Lots and lots of fluid, in fact. 24 cc. It was a stressful and very painful 90 minutes at High Resolution – thank goodness, my incredible sonographer Shannon was with me again. (I think of her as “my sonographer” now.)  Shannon located the fluid – it was a seroma completely filling up the cavity created by the lumpectomy. (https://breast-cancer.ca/seromsurgery/ ) From report: “An aspiration was performed for the palpable and painful 6.3 cm x 2.4 cm x 3.9 cm irregular shaped seroma located in the right breast at 12 o’clock middle depth 5 cm from the nipple. This was described on the previous ultrasound report…. Once the needle was documented to be in the correct location, 24 cc of bloody fluid was aspirated.”  Toby told me later it was “painful” for him just looking at the size of the 18 gauge needle the doctor used!  Now, you’d think once the fluid was gone that the pain would POOF! just stop….. yeah, you’d think that, but it wouldn’t be true. First of all, the doc poked around in there  injecting lidocaine and then pulling out fluid. Plus, it hadn’t even been a week since the lumpectomy, and let’s not forget about the nerve pain with the nerves that were getting some extra-special love and attention. And, nerves that are already on high alert with my fibromyalgia.  (https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780 ) Sigh. Needless to say, this was an exhausting and traumatic 90 minutes – I was wiped. And, still in pain. And, let’s not forget – highly medicated.

Later that evening, sweet amazing friend Holly brought incredible mac-n-cheese (she truly does make the BEST!) and hung out to visit – at least I think she did… I was kind of loopy, to say the least. When she arrived, I had already been icing my breast with the the big fabric ice packs inside my surgery “corset bra” – rotating about every 30 or 40  minutes, switching to a colder, icier one. Keep in mind, I had been doing this same thing since Monday when the jabbing pains began. I had been in pain so I was also “holding” the ice pack to my breast – kind of like how you hold your stomach when you have a cramp. Then, Holly left and our neighbors Suzy and Steve came over to chat and check on me. (I have an incredible tribe, I really do.) I switched to a colder ice pack again. And, I continued to “hold” it to my breast – it felt colder that way and it hurt less. Then, I went to the restroom and thought I would take out the ice pack and check it for coldness while in the bathroom. Ice pack was sort of cold, but the underneath of my boob was frozen! Like, FROZEN! (I have been searching for 30+ minutes for an accurate image on google and cannot find one – keeps giving me images of frozen chicken “breasts” or cool sculpting!) It was like a frozen, cold, chunk of crinkled fat …. crinkled in the shape of the ice pack. It was a weird, ghostly white-ish color (like an old, dead fish), it felt like a cold, dead guy (and yes, I HAVE touched a cold, dead guy), and it… well, it totally freaked me out! Long story, short (yes, I CAN shorten a story), it was just “frozen” from over-icing. Even though I had been doing the same icing protocol since Monday  -for some reason it picked right then and there to freeze up and freak me out! My neighbor is a PT and I called her into the bathroom and she checked it out (yes, ANOTHER person feeling me up!) and the more she touched and touched, the more it started to thaw and soften. Sigh. A few hours later, it was completely “thawed” and the skin was pretty red and burned from the cold. Yay me. Such a fun day.

Thursday, August 1: Heavily medicated, feeling like a zombie, headache, no appetite, diarrhea (how you ask? I have no appetite so there’s really no food to rapidly flush through my system??? Who the hell knows.)  Appointment in the afternoon with the medical oncologist – who unfortunately, didn’t know I had been having severe pain issues and had just had the aspiration done the day before. He felt really bad about bringing us in when he didn’t really have any new news for us and the physical moving around in order to attend the appointment seemed to stir up the nerve pain to new heights of jabbiness and I was pretty much miserable the whole time I was there. He agreed that I  needed to keep up with full pain meds and total rest, and he said we wouldn’t be doing any thing else treatment-wise until I healed and felt much better. I was also supposed to meet with the nutritionist after the appointment – that didn’t really happen; although, she did help work out a medication confusion – so that was good. Apparently, though, my medical oncologist did not communicate with my breast surgeon or my radiation oncologist – we’re quickly learning to remind them to communicate often.  Back a bit……  didn’t realize I never included this information – on July 18 we met Dr. Amit Garg, my radiation oncologist (RO). ( https://pmgdirectory.phs.org/details/1013/amit-garg-radiation_oncology-rio_rancho ) He told us I would probably be a good candidate for the Accelerated Partial Breast Irradiation ( https://www.cancercenter.com/breast-cancer/apbi/ ). He did mention that if I remained a good candidate that it would happen fairly quickly following surgery and after asking an assistant and a a scheduler some questions, we figured it would likely be the week of August 13 (the first week of students back to school). We knew there were still lots of “ifs” floating around this treatment option, but having some idea of maybe a plan felt better than no idea of no plan at all. So… last Thursday when my MO (medical oncologist) said “…nothing would happen until healing was complete and I was feeling stronger…”, we assumed that meant no APBI. We also assumed he knew the radiation oncologist was recommending APBI.

This is where the making sure the team communicates comes in.

Now, in their defense, I didn’t expect one doc to immediately walk next door and chat face-to-face with the other two docs about me as soon as I left the office. They have a lot going on. And, it’s not really THAT big of a deal – but it does seem as though that one minor detail might mean my radiation (IF I continue to be a candidate for APBI) will be a week later than we thought. And, that’s an issue because one of my bestest, most favorite people in the world has a break between jobs and was planning to come and be with me for the first 3 days of the radiation – if it’s the week of the 13th.

And, honestly, the sooner we can check another treatment off the To-Do list, the better I feel.

Friday, August 3: Starts with a phone call from the radiation oncologist’s assistant making an appointment for the scan for the APBI. She’s calling because the surgical pathology reports are in. Yay! All she tells me is that according to the reports I’m still a candidate for APBI. I tell her what the MO said, I suggest that maybe they should all be chatting (because apparently RO also didn’t know about the aspiration and the pain concerns) and she says she’ll check with them all and call me back. I sleep and rest a lot – pain seems to be subsiding a bit, YAY! My surgeon’s assistant calls to go over the results with me and confirm my Monday follow-up appointment with surgeon, I ask her a few questions, and then my breast surgeon calls and we talk about it all. I feel very attended to – which is good. I did not, however, receive a call back on Friday about the scan or radiation or the APBI…. so I figure we’ll just talk all the APBI scheduling at my follow-up appointment on Monday.

Speaking of results:

Clear Margins – YAY!   Node Negative – YAY!   Ki-67 56.8% – not yay. 

What do those mean? 

Clear margins means that when the surgeon removed the tumor, she also removed an area around the outside of the tumor (the margin). During surgery, they send a sample of that “margin” to the lab for a “quick check” for cancerous cells. If it comes back that there are cancer cells, then the surgeon can take a bigger margin right there during the same operation. If the “quick check” comes back clean, then the surgeon is done with removal of the tumor and continues with the rest of the operation. The tumor, including the “margins”, are then sent to pathology for all kinds of testing.  One of the tests is a much deeper, more intense look at the “margins” to make sure they really are clear, or “negative” – negative of disease, no disease. “Negative margins” also means “clear margins” – which is good news. If the margins were positive, then there would likely be another surgery to remove an even bigger “margin”. So… good news!!! (https://www.breastcancer.org/symptoms/diagnosis/margins)

Node Negative means that the lymph node that was removed during my surgery (Sentinel Node Biopsy https://www.cancer.net/research-and-advocacy/asco-care-and-treatment-recommendations-patients/sentinel-lymph-node-biopsy-early-stage-breast-cancer ) was found to be negative of any metastatic disease – which means, as far as they can tell, my breast cancer had not spread to or through my lymph nodes yet. This means it’s very, very unlikely that it has spread anywhere else in my body and that it was only right there in my right breast. (https://ww5.komen.org/BreastCancer/LymphNodeStatus.html ) Yay for early detection! Yay for mammograms!

Speaking of… have you done your monthly self-exams or your yearly mammogram yet? ( https://ww5.komen.org/BreastCancer/Getting-a-Mammogram.html )

Ki-67 is a a protein in cells that increases as they prepare to divide into new cells. The more positive cells there are, the more quickly they are dividing and forming new cells. In breast cancer, a result of less than 10% is considered low, 10-20% borderline, and high if more than 20%. So, 56.8 is a pretty high score. It is not a completely definitive score – especially since my tumor is early and small (grade 1, score of 5.  3 to 5 is grade 1, 5-7 is grade 2, 8-9 is grade 3.) It is, however, troubling. I spent almost 2 hours reading about Ki-67 and it’s correlation to my type of breast cancer, my age, my numbers, treatments, and oncotype dx scoring. The bottom line is this (and yes, I ran this past the doctor to see if it was a “correct” interpretation of what I read online and it is): Ki-67 is one of the 21 genes tested in the oncotype dx genomic test. It is the most heavily weighted gene, but there are 20 other genes included in the test. There is a pretty direct correlation between scores in the “high” range for Ki-67 and oncotype dx. If one of the two is in the “high” range, there’s a greater than 90% chance the other one will be in the “high” range, too. So, I have a pretty good chance my oncotype dx score will be high; and, if it’s high, that means I will be doing chemotherapy. There’s also a chance it won’t be high – I’m not forgetting that 10%. I am; however, being realistic and preparing myself for the news that chemo will be in my future. If the score comes back low – then, YAY!!! I’ll take it, but I’m also doing a little prepatory work for it to be “high”.  If chemo is needed to keep me alive and disease-free, then YAY! for chemo is the way I look at it. ( https://www.breastcancer.org/symptoms/diagnosis/rate_grade )

Here’s a clinical look at Ki-67, if you’re interested: (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5250608/)

Saturday and Sunday, August 4,5: I sleep. A lot. Not as much on Saturday – actually had a little bit of energy on Saturday. We messed around with getting a rental car so Sean can use one of our cars to drive around while he’s living back on the west side with us for a month before he leaves for Germany.  Also, I got a “haircut house call” from my sweet friend and teaching colleague, Alex. I really needed a trim or something but doc didn’t want me going out anywhere. Thankfully, Alex was able to come to me! It was really nice to see someone from school. And, her lovely daughter, a student of mine for 6 years, came along – which was a double treat for me! It also reminded me of how nervous I am about returning to school in my current state. Sigh. Otherwise, I pretty much slept. A lot. Like, several hours over night and several 2-hour “naps” during both days. All while keeping up with my medication; so while being quite sleepy, I’m also extremely loopy and very “out of it”. I’m thinking my body must be trying to catch up on the months of sleep I’ve missed due to pain and hot flashes and all the other crap that keeps us women awake at night. Or, maybe it just knows I need to sleep right now.

I’m really quite anxious about returning to school. Over the last several years, I’ve had more than one August where I had to return to school in a less-than-ready mental and physical state….. and it’s really, really difficult. Very, very difficult. August 2008 I returned after missing the last 8 weeks of the previous school year, having left school in an ambulance. Surgery just 3 weeks before school began. August 2009 I returned after having missed 9 weeks of the previous spring semester and still struggling to stay well. August 2014 I returned after having missed all but 3 weeks of the second semester and losing both of my parents. I really wasn’t sure I could ever teach again. August 2015 I returned after having lost my father-in-law in June, spending a month in TX getting Toby’s mom packed and ready to move to Abq with us, moving her here, finding a house to move us all in to for her purposes, working on and putting our house up for sale – all I wanted to do that August was run away to a beach and sleep. August 2016 I returned in severe pain from my work injured knee and my hips that had gone from bad to completely unbearable. I had a knee surgery scheduled for the second week of school, and the first hip surgery was soon to be scheduled for November. I hurt terribly and basically taught from my chair…… how pitiful is that for a Physical Education teacher?! And now this. Damn. Will I even be starting with the kids next week or will I be doing radiation? Will I have to do chemo and be a total wreck for months? Will I be me or a cranky, restless, tired, sick, inpatient version of me? I actually love engaging with and playing with and knowing my students. Right now, all I want to do is hide in my office. And, even that will be exhausting. I mean, writing this blog entry is the longest I have been awake during the day in probably 6 days. And, if I’m being completely honest, I took 2 different naps while writing this. How in the hell am I supposed to be at school all day? Thank goodness there are no students yet – will I really be able to be happy to see them? Will I really be able to play and teach and lead and manage 10 classes a day. every 30 minutes. I barely have an appetite. Friends have been bringing the most lovely food since surgery. I’m so grateful, as is Toby; although, I’ve actually eaten very little of it – I have no appetite and have lost 5 pounds this past week. I want to want to eat it. How will I work if I can’t make myself eat? I know I need to eat, I know I need the calories and the protein for energy. I know all of this. I know I need to return to work and that very likely, the work will help my healing. But, do I really have it in me to do this?

Tomorrow will be one month since receiving the malignant diagnosis. One month. Damn. I wonder what life will be like on September 6, or December 6, or in a year on July 6, 2019?

So, I’ve just read through this – quite long, boring, and a rather whiny ending. But, I’m going to go ahead and click “publish”… what the hell. It took two long naps over about 9 hours to write it, might as well click “publish”.

G’nite. Hope your Monday is happy. ♥

Sleeping. A lot. ZZzzzzzzz

My partial mastectomy and sentinel node biopsy was about 60 hours ago….. I have slept A LOT of those 60 hours. A lot.

Surgery went well, from what Dr. Bishop relayed to Toby. She removed the tumor and 1 lymph node in about 1 hour. It took several hours for me to wake up enough to be sent home. Several, as in more than 5. The recovery room staff – from what I remember – was extremely patient and kind in their efforts to wake me and keep me awake. I remember my head felt like it was going to explode at any moment and my breast and arm hurt a hell of a lot more than I expected.

My headache has continued; although, thankfully, it has eased up. I have stopped considering head-amputation as a method of pain relief.

My right breast, shoulder, arm pit, arm, wrist, and hand still hurt like crazy… for whatever ridiculous reason, I did not expect this much pain. I am quite grateful for the Tramadol. I have horrific reactions to anything codeine or morphine related, so Tramadol is pretty much it for me. Alternating Tramadol with Tylenol is kind of how I’ve been telling time for the past 2 days.

I did not vomit the day of or even the day after surgery – very cool! That’s a first! Way to go anesthesia team at Rust. Some nausea and I haven’t really had much of an appetite – I’ve had one grilled cheese sandwich and a few slices of garlic toast from Dion’s. Nothing else has tickled my fancy. I tried another grilled cheese and egg sandwich earlier today – but that came back up. Damn. And then, the diarrhea started. Mean, green, diarrhea machine – that’s me.  Stopped about 6 hours ago now – so hopefully, it’s done.

The sleeping; however, has not stopped. I wake up, sometimes get up and move around, and sometimes just fall right back asleep. I drink water and go to the bathroom, and then fall back asleep. I read a paragraph in my book, and then – you guessed it – fall right back asleep. Deb and Whitney brought food and came to visit this afternoon. I had just woken up when they got here and after they left…. I fell right back to sleep.

Oh! Yeah! I also showered today… and then fell right back asleep. Showers can be exhausting. And, I ate a lovely, juicy, perfectly ripe peach.

And, then fell back asleep. Eating that peach was tasty – and, exhausting.

Surgery Day Today

With my nasty headache, it’s easier to use pics than to write words …..

Rust Presbyterian Hospital, 7:30 am, 7.26.18; kinda stormy morning here on the west side. They took such good care of us.

My guy. Partner in just about everything since April, 1985.

Wendy – friend extraordinaire and a supremely brilliant Nasty Woman! She just appeared outta nowhere this morning to wait alongside Toby. No one has ever waited with Toby through any of my operations. This was, I believe, one of the most compassionate acts of kindest we’ve ever received. I wrote earlier about the importance of not being alone through all of this – well, he didn’t have to be alone today. Thank you, Wendy.❤

Pre- surgery….. waiting.

A little later…. more waiting. It was only about an hour and a half – filled with nurses, IVs, vitals, directions, bathroom trips with my ass hangin’ out and my saline bag along for the ride…… but it felt like hours.

See? Doesn’t it look like he feels it was hours?

No, this is not Jennifer Bishop MD, Fellowship trained breast surgeon. Duh. This is our sweet friend Dr. Jeff Brown who is also a surgeon at Rust. He was operating today (yay!) in OR 1 right next to me (and the earlier mentioned Dr. Bishop, and her team – including the lovely, compassionate nurses, Tracie and Chris, of course) in OR 2. It may be very silly – but knowing Jeff was there, doing surgeries, and so close by – made me feel better. Safer. We so adore Jeff – thanks for sharing him, Keri!!

Took my current book everywhere yesterday and today. Read about 2 paragraphs total – the same two paragraphs over and over!

Arrived home about 5:30 PM to these beauties. Thank you, Denise, Melanie, and our Blissful Spirits family. Wow!

Home by 5:30 pm. Yep…. surgery was about 75 minutes starting at 9:30 am. The rest of the time was me trying to wake up. Trying to keep my head from exploding off my body – although, that very well could have eliminated my severe headache pain. Trying not to pass out or vomit. Which – by the way – I did neither of this time!! Woo! Hoo!! Still have the headache – ugh – but no vomiting or fainting!

Scotty – lap cuddler professional. Doing double duty by lovin’ on me (very clean, by the way!) and hiding from the massive lightning storm!

What the hell? Where’d the pimple come from? I wake up and there’s a pimple.

And, where in the hell did it go? Weird. Wake up again, 45 minutes later and it’s gone??!

Gracie – rabies, etc. updated but not spa-day clean, yet. I’d love to say she was lovin’ on me but in all reality she was freaking out about the storm. Really freaking out – poor girl. Had to move her to the dark, small bathroom downstairs in an effort to help her relax …. and to most definitely help my exploding head.

Amy, friend of 15 years and exceptionally gifted educator colleague, brought food tonight for Toby. The toast was the BEST!! I’ve never eaten – never – on the day/evening of surgery, cannot ever tolerate anything …….. but the toast was perfect!! I ate two pieces. Score!

Bedtime. Soft, comfy, easy-on-and-off pajama top – thanks Target and Toby. And, check out my cool 70’s style tube top holding everything together! I had several of these in the 70’s….. short, midriff, long top, dress. Hahaha… look at me – I’m vintage!

Blue pee!! Even matches the Kleenex box!! (Don’t tell Toby I posted that….. 😜)

G’nite. Thank you all for holding me safely in your hearts today. ❤💜