Tuesday, September 13, 2016

The Radiation Queen

It's a queen. ~ Ripley, Aliens 3 (1992)
At least, that's what I thought when first confronted with the massive radiation machine on my first day of treatment.  In my mind, I saw this:




The Queen, ready to spawn thousands of aliens in Alien Resurrection (1997)


In reality, I encounter this brightly lit machine each weekday of my five weeks of radiation treatment:


The Radiation Machine aka The Queen
In quick recap of my 2016, I was diagnosed with a "bit" of triple negative breast cancer (TNBC) in January 2016 and ended that month with a lumpectomy/breast conserving surgery wherein my surgeon, the wonderful Dr. App, removed my tumors, moved around my breast tissue and relocated my nipple to form a slightly smaller yet relatively unmolested left breast.


I call her Frankenboob.
My right remains jealous.


I endured AC/T chemotherapy from March 3, 2016 through July 19, 2016, and am still recovering from the side effects.  My chemo port was removed August 5, 2016, so that I'm no longer a member of the Borg. And the following week, I met the "Queen" above to begin my daily radiation treatments.


I have one each day, Monday through Friday.  Do you see that table with what looks like molding along the top?  Here, let me show you a closer picture:


Radiation Table


Under the sheet is a "bean bag" that has been molded to my body.  During my initial appointment - my simulation appointment - the technicians placed the large bag underneath me and, once they had me in the desired therapy position (arms above my head), they sucked all of the air out of the bag in order to create a "mold" for my body to be used at each treatment.  It helps to ensure that I'm in the same position each time they aim that little beam.  As do my four new tattoos.


What? Tattoos? That's right.  I told the tech with the needle that she was giving me my gateway tattoos.  I'm sure this will lead down a path of elaborate sci-fi references and jaunty looking owls covering my pale flesh. 


That desk lamp looking contraption above me is actually a breathing tube.   

Right.  What?  A breathing tube?  Don't I just close my eyes and relax while any possible remaining cancer cells are zapped out of me?


Nope.  See?  I put my mouth around that large blue piece. 


Go ahead, try to convince me that a man didn't design that thing.

In the end, I look kinda like this:




Actually, I look exactly like this since this was taken by one of my technicians.  See?





Yep, that's me looking uber comfortable, right? Not at all like I'm being used to incubate an alien.  Actually, put me in a vat of water and I'm a bit more Luke Skywalker from Empire Strikes Back recovering from nearly becoming a snow monster's popsicle.  


Anyway, this is a fully interactive radiation.  Because my tumors (the main and its mini-me) were located in my left breast, my radiology oncologist opted to have me use the breath-hold technique when receiving radiation treatments. At that first appointment, they had me use the breathing tube to inhale as much as possible and measured my lung capacity.  Then they had me do it again.  And again.  After three large breaths, they used these measurements to find a range representing 75% of my lung capacity.  During treatment, I inhale until I reach that 75% range then hold my breath as the actual treatment takes place.  This creates extra space between the tissue being radiated and important parts like, oh, my heart.


But how can I know when I've reached that 75% range?


Well, as you can see above, along with the breath tube and tiny clamps closing off my nostrils, I also wear goggles during treatment.  Goggles that show me the computer screen being used by my techs.  And this is where it becomes like a video game.  A ridiculously easy video game but, really, those are the only kind I enjoy.  During treatment, when I look through those goggles, I see a screen like this:


Radiation Mock PC Screen - Breath Hold
The red line moves across the screen from left to right as the tube monitors my breathing.  First, I aim for my exhale to end within the gray bar across the bottom.  Once I've done that three times in a row, the tech is able to press the big green button, which causes the green bar to appear on the screen and I inhale until the line is within that green bar; then I hold my breath.  I hold my breath until the big red button lights up.  I usually do this three times during a treatment.  The first two times tend to be about 20 seconds each with the third coming in at about 10 seconds. 
I believe the longest I've held my breath doing this was during the simulation appointment at 34 or 35 seconds.
 

Now, before and between each of those breath holds, the radiation machine moves around me as my table also moves, putting the machine and me in specific positions for the radiation.  That circular part of the machine over my face in the picture?  That typically begins along my right side for the first zap then moves to my left side, down low, for the following two.  Three breath holds and I'm done with a treatment.


One treatment each day for 25 days.


As of today, I've finished 23 treatments.  My last ... LAST ... radiation treatment will be this Thursday, September 15, 2016. 


My skin held up really well until about treatment 21.  Sunday night, I realized that a large blister had formed and broken in the treatment area just under my left arm.  Fun times.  As of last night, other parts of the treatment area have started to peel like I had a really stupid time on spring break in Florida.  I cannot wait until Thursday.


My friends these days are called Aloe Vera (the clear kind) and Aquaphor.  I apply them generously and often.  Enemies include heat and ... well ... anything touching the area.  Since last Thursday, the worst hoodlum is called "bra." 


Thursday really cannot come soon enough.  Someone else can meet the Radiation Queen and play this video game of zapping cells.


I'm ready for Ripley 2.0 to head on down to earth.









Sunday, September 4, 2016

Brave and Inspiring

Not today.

Just. Not today.

You will hear the words "brave" and "inspiring" a lot during your treatment. You likely said them yourself when it was a friend or other loved one going through the same fight.

"You're so brave."

      "You inspire me."

                   "You are amazing."

  "You're so strong."

It's all a part of that support I've mentioned before. That immense support that can sometimes seem overwhelming and so unexpected.

You focus on recovering from surgery. You do your best to take care of yourself during chemotherapy. You learn all that you can about radiation. Each day, you take that next step forward.

And, if you're like me, you often don't feel all that strong.

You're more amazed at the time that's gone by than at yourself.

Inspiration? Bah. Brave?

Well, I sometimes feel brave to be seen in public with my cancer-altered body. Does that count?

If you're like me, there will be days when you just can't.
You can't be the brave, strong, amazing warrior that your world expects. You feel incapable of positivity. At this point - my point - you've finished chemotherapy but chemotherapy hasn't finished you.

                                   It just can't quit you.

Many side effects have blissfully gone away and your body is sprouting hair once again and often in places you really wish it wouldn't. Nose bleeds have ended and coughing is lessened. But ... fatigue continues and even worsens. Your toenails have yet to fall off and, what's this? Why are they itching?
What seems a minor inconvenience quickly invades your life.  Itch.

Itch.
                              Itch! Itch! Itchity Itch!

Still managing to ignore it? Well, let's add blisters. Many, watery, itching, burning blisters.
Jesus - Are these the elephant man's toes?

What. Is. Happening!?

Ask your doctor.  Perhaps, like me, you'll find out that it is "just part of the process." 

On that day, my friend, you'll not feel brave, or amazing, or inspiring. You'll feel like hitting something. Hard. Starting with the person who said, "just part of the process."

You'll feel like crying a lot. Except that, well, crying comes with a runny, stuffy nose and you'd rather not.

You might want to talk to someone. To vent. But ... this isn't brave. Or inspiring. You don't want to burden your loved ones when there's nothing they can do and little they can really understand. 
I remember this. I remember seeing this is my friend Robin's eyes but not knowing what it was exactly.  I'd ask how she's doing and she'd smile and say fine. I knew it wasn't fine. But I also didn't know what to say or what I could do for her. Looking back, I wish I would have simply said, "I wish there was something I could do for you."  But I digress.


Hopefully, like me, you've found a support group - whether it is live or online - it's important to have a group of people to whom you can vent. Share worries. Share experiences.  And sometimes they are your best lifeline. A group of people who are going through the same or similar treatment are invaluable. They know what you're going through. If they're not able to give suggestions for coping, they understand completely and sometimes that is the most needed thing in your life. True understanding. Acceptance of your bad days.

The days you say ... not today. There's no bravery, no inspiration.
Just. Not today.

I'd love to end this by saying that tomorrow is another day. That all will be well. That the sun will come out or some shit like that. But I'm waiting for my blistery toes to start driving me insane once again. I'm realizing that the holiday weekend is nearly over and I've neither visited friends or family nor gotten loads of work done. 

I've done ... really nothing.  Actually, wait, I've managed not to draw blood scratching. 

Right now, that's pretty fucking impressive. 

Screw brave and inspiring. 



Sunday, August 28, 2016

It's All Too Much

I can't believe that over a month has gone by since my farewell to Nurse L.  Time has flown since that last chemotherapy infusion on July 19th.  I saw my beloved Struts again in Cincinnati and am already half-way through my radiation treatments.  Most knowing me would have thought I'd have popped up a "final chemo" blog post within a day or two of that treatment.


I mean, really. FINAL chemo. That's huge. One step closer to being finished with treatment. 


All I can say - what I keep coming back to in terms of a "why" I didn't is - it's all too much.


Chemotherapy is a bitch.  You start out all "I'm gonna kick cancer's ass" and, at the end, you crawl to the edge of that boxing ring and barely allow the ref to raise your hand in victory before falling indelicately over the side and passing out.


The side-effects of chemo are cumulative.  You start out with some nausea and fatigue.  Then you lose your hair (the one everyone recognizes).  Then your feet hurt, your nose bleeds, your mouth tastes awful and you have to use special rinses to curb mouth sores.  Your digestive system is just pissed, and your toenails decide to chuck it all and give up.  Each side effect builds on the one before it.  And throughout all of it, the fatigue increases.


Walking into that building on my final chemotherapy day was a bit surreal - as this entire experience has been surreal.  Honestly, I think that is how I've coped; I'm focused on getting through this year and every step is surreal.  My stepmom, Pam, had come up again and went with me one final time.


I hadn't been in my chair that day for long before a few of my coworkers showed up with balloons, donuts, a cake, an awesome gift certificate to one of my favorite restaurants, and champagne.  God bless them.  Dan, Bonnie, Kim and her girls, all surprised me.  And then, when I returned from a bathroom break, I found my sister Linda (who was supposed to be back at work in Ohio) and my Dad; they'd driven up to surprise me, too.  And just when I'd hugged those two, I turned to find my sister Jenny (who was supposed to be back at work in Indianapolis), my Mom, and my aunt Berb had made the trip as well - AND brought her Texas sheet cake with her.  Too much. 


The family also brought up a pink poster with their hands drawn on it, waving goodbye to cancer. 


The Original Wavers - #ByeCancer


I later took the poster to work and had more people sign it.  It represents just some of the people who have supported me in so many ways during these months. 




Too much.


My sister Glenda stopped by as well.  And one of my bosses, Jim.  Meanwhile, I just tried to take it all in - and failed miserably.  But, honestly, that was probably for the best.  Again ... it's surreal. 


It was a gathering that I wasn't expecting and it meant more than I can adequately describe.  Yet, leaving the infusion center that day felt somehow anti-climactic.  You expect to be overcome with emotion.  You anticipate a feeling of victory or satisfaction somehow.  But you've just had another chemotherapy infusion and what you feel is a combination of steroids and poison coursing through your veins meant to rid your body of any spare cancer cells.


Leaving the building isn't the end of chemotherapy.  Your fresh dose has yet to begin to wreak havoc with your body, to add its own side effects to the mountain that has been accumulating the past five months. 


To try to absorb and recognize at that moment the enormity of my last chemotherapy infusion was to potentially fracture my carefully constructed "let's get through this" fa├žade.  Nope. 


Too much.


I think that is why it has taken me over a month to finally sit down and write this post.  And, frankly, my body is far from recovered from the side effects of chemotherapy.  My feet hurt, some nails are clinging on stubbornly despite the fact that there is no saving them now, and that fatigue.  Oh, the fatigue. 


I'm beginning to believe that "Fatigue" is the very worst "F" word out there. 


But my cough is finally gone, my nose bleeds have stopped, I can take deep breaths once more, and my hair - or at least the "advance team" for my hair - is about half an inch long now. 


If you're in the midst of chemotherapy right now or getting ready to begin it, as I've said before, you'll get through it.  I did.  Take it one day at a time.  Address side effects as they come up.  And rest.  Hydrate and rest.  Accept help.  Trust. 


You'll get through it and, in about a month or so, you'll look back and wonder how you did. 



Tuesday, July 19, 2016

Thank you, Nurse L

Nurse L,

That first day back on March 4, I waited anxiously to find out who my nurse would be for chemotherapy.  I remember worrying about whether I would like her (knowing only her name).  This would be the person who would answer my questions, calm my fears, handle the dangerous drugs - quite literally holding my life in her hands.  She would watch me closely for signs of the allergic reactions that could kill me.  I can't imagine going through this hell relying on someone I did not trust.

Thank God they gave me you.

You have been a joy, a balm, a voice of reason during a time when it is so easy to spin out of control.  You've listened calmly to each of my questions, anxieties, oddities, and answered them all. 

Do you truly understand just how important you are to the people sitting in those pods?  Our chemo nurses are our lifelines and often the first to get our questions - our real questions.  You hold our hands through one of the most difficult times we'll ever have in our lives.  Our hopefully long long lives.

You are loved.
 
You are respected.
 
And I am so incredibly grateful to you for helping to save my life.  You realize that is what you do each day, right?
 
You save lives.

Thank you for making the choice to become a nurse. Each and every one of your patients is blessed to have you.  And I am proud that I have been among them.


---------------------------------
I wrote the above in a thank you card today.  There have been so many people who have been essential to my treatment but some do stick out more - those bright lights amidst the gloom - and Nurse L was one of them.  All of the nurses I've encountered at Lemmen-Holton have been fantastic.  Our community is truly blessed to have them.


Oh ... and did I mention:  TODAY WAS MY LAST EFFIN' CHEMOTHERAPY!!


I'll write more on that later.


But now ... we dance! 

  


Friday, July 8, 2016

The Penultimate

Ah ... the penultimate.
"Last but one in a series of things; second to last." ~ Oxford Dictionaries
Last but one. My little sister reminded me of this word recently and I love it.  In television series, it often seems to mean the episode of the season, often better than the finale.  If you're a Game of Thrones fan, just think of the first three seasons: "Baelor," "Blackwater," and "The Rains of Castamere."  I'd explain why but ... I wouldn't want to ruin them for you. 

Plus I just like saying it.  Penultimate.

Today was my penultimate Taxol infusion. Only one remains. I mentioned last time the various side effects this drug can cause and which ones I've been "blessed" with during the past few months.  Everyone handles chemotherapy drugs differently and I seem rather susceptible to Taxol's evil nature despite doing weekly doses rather than the denser bi-weekly doses.  Despite icing my feet and hands during every infusion.  Even despite my doctor lowering my dose last Friday.

Penultimate. Just one more.

I'm so close. Getting this close to being finished while feeling the cumulative effects of the drug brings to mind a long race.  The literal uphill race.  Picture it ... you've ran long and far, you've had missteps along the way but you're still going and you can see it.  The finish line.  Your feet hurt, you're struggling for breath, but you know you can make it.  Just a bit further.  There's a ribbon to cross, cheering fans even, waiting for you. 

You keep going, step after step, and you notice that you're looking UP at the finish because the hill is getting steeper the closer you come to finally crossing that line. 
SERIOUSLY? There can't be a bit of a break in there? Some sort of relief?

Well, sometimes you make your own break, my friend, your own relief.

That's why my last chemo will not be next Friday, July 15.  It can't.  I won't be there.  I'll be "breaking" on Mackinac Island at the beautiful Lilac Tree Suites and Spa with my sisters (original and in law) and stepmom. 

Just a bit of a break.  But it's worth it. 

And then I'll be back for the finale - July 19th.  I'm pretty sure that one final side effect from Taxol is mushy emotional crap because I can't seem to think of that last infusion without leaking out of my eyes. I don't think I've ever wanted something OVER so much in my life. 

        And I include my divorce in that group.

For now though, I cheer my penultimate.  It sets up the finale, you see.  It a door finally cracking open and the light from outside just beginning to shine through.

It's the beginning of a voiced "You did ....." just waiting for the "...it!"

I'm so excited!  But first I need to hop a boat to an island and see a Pink Pony about an excellent steak while listening to music and watching boats out on beautiful blue water. 

You know .... as one does. 

2016 has been the hardest year of my life but dammit, I'm taking every bit of happy I can from it.  Cancer can suck it. 

           The "it" being big hairy donkey balls.

Ha!  Wow, that turned more violent than I intended.

Back to pretty boats floating in blue water. 

And waiting for the finale.

Cheers!


Tuesday, June 28, 2016

The New Normal.

I fill the measuring cup - 4 cups of hot water - and then again. I measure out Epson Salts - 1 cup total.  I  carefully remove last nights' bandages from my feet, and lean back as I relax for a 15-20 minute soak.

That's my current new normal. Twice a day.
_______________________________________ 

I've finished #9 or my 12 Taxol treatments or #13 of my total 16 chemotherapy infusions.  A week ago Sunday night, as I got ready for bed, something about my feet caught my notice.  Something looked weird.
Cue all SORTS of squinting, pulling back, never finding the right distance (i.e., I'm old and chemo is further affecting my eyesight); I took OFF my glasses for a closer look.
My first two toes of each foot - my big toe and next - looked off.  It appeared as if each nail was starting to lift OFF of the nail-bed.
I try not to freak OUT.  I try not to fucking freak out at the thought of one more thing changing.  What the bloody hell is THIS now?
I thought that I was mentally prepared for this freak show and the possibility of losing my hair during it.  That's largely a given when you're given the type of chemotherapy used in the treatment of breast cancer. I was NOT prepared for the possibility of losing toenails.

Or fingernails.
Okay ... maybe theoretically, I'd heard of the possibility but the reality of that ending looming over my head in June 2016?  I looked at my feet and thought, "SERIOUSLY?! You've never been more pampered in your fucking life and NOW you're going to decide to chuck it all and fall off?!"
I've been lathering my feet and hands in cream each day and night after the hand and foot syndrome scare post AC treatment and thought I was largely in the clear. 

They said Taxol was SO much easier.

They said Taxol was a breeze relative to AC. 

There are reasons quick consults don't exist and you won't get a direct answer to your, "How will Taxol affect me," google search.  I've said it before and I'll say it repeatedly:  It's ALL relative.

Some patients never have neuropathy. 
I do. I have a bit of tingling and numbness to my toes and feet.  Not so much with my hands (so far) but I have to keep an eye on it.
 
Some patients lose their eyebrows and eyelashes along with their hair.  So far, mine are holding on despite the bald head.  Actually, portions of my hair keep growing - I'm very soft and fluffy up top right now - but it is sporadic and I'll likely keep shaving it until the Taxol is officially finished.
And THEN I might still lose the eyebrows and eyelashes once that is done; some do.


Some lose their nails AFTER Taxol is finished. Some never have nail problems at all.


Some patients have real issues with their white blood cell counts and therapy is delayed because of it; thankfully, knock on wood, throw salt over my shoulder, I don't.


Some patients have real issues with mouth sores; thankfully, I don't. So far.  I rinse my mouth twice a day with a combination of salt/baking soda/water to stem off such things.  Mmmm ... tasty. But it has worked so far.


Some patients have changes to their vision. I do. I'll need to wait several months after chemotherapy is finished before getting an eye exam so that my vision can return to whatever 40-something mayhem it chooses.  For now, I keep reading glasses nearby.


The list of possible side-effects go on.  Some patients experience many, some few. 
It is amazing what you can put up with when you ... well ... have no choice.  You adapt. 
And you'll get through it.


I have THREE more infusions of Taxol to go.  July 1, July 8, and July 19.  It's so close I can taste it.
Seriously ... kinda metallic and icky (can't wait for THAT side-effect to go away).
Meanwhile, I'll pour my cup of Epson salts into my 8 cups of hot water and soak twice a day. I'll spray my nails with hydrogen peroxide to check for infection. I'll apply Organic Tea Tree Oil (because why not) to my nails and then add some antibiotic ointment if necessary then carefully wrap the four affected toes in bandages to help keep them clean.  The goal now is to avoid infection.


Avoid delay.


Push through and get it done.


That's my new normal on my last day of age 45. 
____________________________


If you're facing a new normal from cancer, from treatment, remember that you can handle more than you think in the beginning. No, really. You can. And you will. Take things one day at a time.  Make a point to focus on little things that make you happy each and every day.  Ask your doctor and nurse question after question until you feel they've answered your concerns. Be your own best advocate. Rest.
Rest.
Seriously. Rest.
Drink lots of water.
Repeat.
You can do this. I really do have no doubt.
How do I know?
Honey ...  because if I can do this, YOU can do this.

Tuesday, May 31, 2016

That Woman in the Mirror

This is the bottom, right?

You know that saying "scraping the bottom of the barrel"?  That idea of not being able to go any lower?  Actually, I don't know that I believe that's possible.  I think there is always a "lower" to reach.  We might not be able to conceive of it in the midst of some current horror, but, really ...

... there's always a lower.

But right now, I feel like I'm living the bottom of my life.  I might be wrong, certainly.  But ... relatively speaking, I'm living my barrel bottom.  And that's an odd feeling.  You might be surprised but this really isn't a negative nelly post. 

Really. NO.

Think about it.  If you truly feel that you're living the bottom, you truly have no way to go but up.

Chemo is changing me.  I look in the mirror these days and don't recognize myself. 

If you're in the midst of this mayhem, or if you're just beginning it, let me give you hope (even if it might not seem like I can at this point).  You'll get through this.  It might be the hardest thing you'll ever do ... but you will get through it and you'll be stronger when it is finished.

When you look at yourself in the mirror and laugh ... laugh because you can't imagine feeling worse about your appearance than you do at that moment, then that is one less thing life can take from you.  I looked at my reflection in the mirror and laughed.  It's truly ridiculous.  I've ballooned up in weight during treatment so far.  I'm at my heaviest ... EVER.

I should be a linebacker. 

And I'm bald. 

Fat and bald.  That oh so heavenly combination.

So what else will cancer do to me before the end?  Take a few toenails or finger nails?  That's possible on Taxol.  Bring it. 

More pain?  Fine. 

Weird eyesight?  Tingling pain in my hands and feet?  Possible.

Life is surreal at the moment.  I never would have thought I'd be in this shape:  bald, fat, with tingling feet, an often bloody nose, and twitching right eyelid. 

You know what?  When life becomes this, I say fuck it.

Okay ... life, you can mess me up.  So now what?  Seriously, what are you going to do to me now?

Take it all?

There's something oddly freeing about that thought.  The idea that I feel so foreign from myself.  I never imagined ever seeing this image in the mirror.

That woman in the mirror?  She's going to get stronger. It's not going to be easy.  Sadly, it won't be a movie-like montage ending with me in the best shape of my life. 

That woman in the mirror?  She's taking it one week at a time.  Seven more Taxol treatments to go. 

Often, she's taking it one day at a time. 

One hour at a time.

Putting one foot in front of another.  [I was NOT expecting Santa Claus is Coming to Town to flash into my head just now but you get the idea.] 


That woman in the mirror?  Soon she'll be walking out the door.