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.


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.
Seriously. Rest.
Drink lots of water.
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.

Monday, May 23, 2016

Red. 3 Hearts.

"Excuse me. I'm sorry to interrupt you ..."

It was Saturday, mid-morning, and I was sitting in the middle of my favorite café - Real Food - reading on my Kindle and enjoying an omelet (avocado, bacon, Monterey Jack) with toast.  I'm reading the fourth book in The Wheel of Time series by Robert Jordan and was concentrating on Rand al'Thor's escapades so it took a few seconds for me to realize the woman was talking to me.  I looked up and saw a thin blonde woman, my age or a bit older, holding a to-go container, and wearing a blue-checked shirt and dangly earrings. 

           - she continued -

"... but I was sitting over there and ... well, I read energies..."

Say what?  What is happening?  Who is this person? At least, these are the questions I'm fairly certain were written across my face.

"... and you have SO MUCH energy surrounding you.  I just wanted to tell you.  And I drew what it looks like."

My attention is fully on the woman now.  It isn't every day that a stranger comes up to you and tells you that you have lots of energy surrounding you.  And certainly not when you're wondering when in the day your most recent round of chemotherapy is going to zap your ... well ...  energy for the day.

My cancer was caught early but it's an aggressive form and I'm half-way through treatment.  I'm bald, anemic, and my feet hurt.  To say this was not the 2016 I expected is an understatement.

The woman produced a napkin on which she had written:  "Red. 3 Hearts."  And then she drew the same along with an eye peeking up from just beneath the hearts.

"So much energy.  It's a good thing."

I was stunned.  I know I said, "Thank you," but hadn't even begun to process what had just happened before she was gone.  Poof.  Out the door. 

She was leaving and already putting her to-go container in a little red car directly in front of the café when I realized that I would regret not thanking her again for this odd but fantastic little exchange.

I got up, weaved my way through the tables, went outside and asked if I could thank her again.  We hugged.  I told her that her words meant a lot to me, especially with "this" - my "this" included a general wave toward my head and its vague yet explanatory baldness.

She stopped, looked me directly in the eyes and said with a self-possessed confidence of one secure in their knowledge, "Oh ... you're going to be fine."

And just like that, I believed her.

What a wonderful gift to give a complete stranger.  God bless her. 

And God bless the color red, three hearts, and a shot of hope during a rough year. 

Friday, May 20, 2016

Drumroll please .....

It's here. That day.

No .... not THAT day but still a good one.

After my infusion this morning, I'M HALF-WAY DONE WITH CHEMOTHERAPY!

                        *frantic happy dance*

Okay ....but really *happy but slow head toggle to an invisible beat*

This will be number 8 of 16 total. 

I'm heading there soon with my little sister.  Here's hoping for good blood numbers, an easy port access, and completely uneventful icing, drugging time. 

Plus, my new home is looking better and better thanks to all of my fantastic help moving and setting things up.  I hand in my old keys later today.  I see much unpacking in my weekend.

But first ... chemo.

Water? Check!

Star Wars chemo quilt? Check!

Cryotherapy study week-long questi........ uh....... well shit.

                         *looks around at boxes

Wish me luck!

Tuesday, May 17, 2016

The Sleeper Must Awaken ...

"Without change, something sleeps inside us, and seldom awakens. The sleeper must awaken." ~ Duke Leto Atreides in DUNE by Frank Herbert
I'm sleeping.

That's what it feels like, this post three of twelve Taxol infusions.  I realized recently that I've not written anything here this month.  My final thoughts on cancer were of my fear of my first Taxol treatment - the unknown.  My final writing was about Robin - her death, her memorial, her loss - and how she still feels present.

Robin's memorial was beautiful.  People gathered in shared emotion, some spoke, many listened, and throughout it all, life seemed surreal.  What a year it has been.  Facing the truth of mortality - your own or that of a loved one - is at once surreal and terrible.  Comforting where the circumstances ensure that continued survival of a loved one means pain and suffering with no complete healing.  I'm 45 years old - prime middle-age (if such a thing exists) - so I'd love nothing more than to ignore mortality.  Most of us do most of the time.

We walk though our days without a thought of death being around the corner.  We make breakfast, drink our coffee, half-listen to the news of the continued horrors of war and famine then jerk in greater recognition of a threat of snow in May.  We scurry to jobs, fret over bills, and wonder what to do next. But so often it seems we are only blurred images of ourselves.  Have you ever had the experience of being fully present in a moment?  Some of you are surely better at this than I am.  I'll find myself sitting - perhaps drinking a coffee - and suddenly feel completely present.  A ladybug crawling up the side of a table outside Starbucks jumps into my consciousness and becomes one of the most substantial things I've seen in a long time.  I remember that moment.  Why did that moment make itself felt? What was different?

Taxol is messing with my reality.  Cancer is messing with my reality.  My focus right now is - and I've been reminded repeatedly that it must be - on getting through treatment, trudging through each day and staying "healthy" (she writes with a grimace).  Healthy means not getting ill on top of the chemotherapy side effects; healthy does NOT mean staying in any form of decent shape it seems.

Right now, chemo demands that I lather feet and hands in Cetaphil Cream to curb damage from the drugs.  My mouth, primarily my tongue, feels foreign, thick and sore.  Not horribly so, just annoyingly so.  I rinse my mouth multiple times a day with a combination of water, baking soda, and salt to curb any sores (thankfully I've had none of those).  I put organic coconut oil on my scars - the 5 inch one under my arm from checking my lymph nodes and the roughly 12 inch winding road scar surrounding Frankeboob - and on top of my bald head.  I have hair that keeps trying to grow, bless it, but it is sparse, course, and/or in patches, which will not do pig, no, not at all so I occasionally shave it.  I was relatively pleased with my head when I first lost my hair. 

Now I just want my hair back.

I want to not feel like Varys from Game of Thrones anymore.

[No offense to the talented Conleth Hill.]   

Perhaps I'd feel differently if the Grand Rapids Comic Con were around the corner.  But it's not.  And I want my hair back.  And energy.  And the ability to walk long distances without putting $&#*ing cream on my feet. 

I'm sleeping.  I'm going through the motions of each day, both amazed and appalled at how quickly time is passing.  Amazed because it means an end to treatment.  Appalled because I wonder where on earth the time has gone.  Probably the same place my body has gone.  My mind, too.  Away. 

I'm in a holding pattern except the hole I have to dig myself out of at the end just keeps getting deeper.  I long for a day that I pick in the future when I'm back to normal - with hair, without my current amount of body fat, with energy - when I can truly celebrate being back.  Being present.  Being awake.  I don't feel like I can set a date for this now because, quite frankly, I don't want to jinx myself. 

The people surrounding me during this time continue to be amazing.  My family, friends, coworkers have repeatedly humbled me with support.  I know what Robin meant when she tried to describe how difficult it was to accept the support.  I'm truly doing nothing more than what I need to do to survive.  We do what we must.  You would, too. 

Chemotherapy for me continues into July.  After that, I'll have six weeks of radiation.  After that, a Dr. Livingston will lift Bride of Frankenboob (my right breast) to look at the same horizon as Frankenboob (what's left of my left).  I'll try desperately (and fail) not to say, "Dr. Livingston(e), I presume?" when I first meet him.  Finally, I'll have a new "base" mammogram taken next January or so.

The new normal.  With changes.  The sleeper must awaken.

And awaken I will.

With non-lopsided boobs. 

And hair.

Lots of hair.