Go Afinitor! Tumor markers DOWN by about 1/3! (Why am I grumpy?)

I found out on Tuesday that my tumor markers are down by 1/3.  That's really good news.  It means I get to stay on Afinitor, which has been a pretty easy treatment for me so far.   

I am only sharing this now, though, because I have been pretty dang grumpy and really didn't feel like celebrating with you all.

"It's good news, but I'm not happy and I don't know why and I don't feel like being around celebration so just leave me alone."  (My evening greeting to my PATIENT husband.)

On Tuesday, I was having issues with mouth sores (side effect of Afinitor) -- which pretty much cured my sugar addiction overnight.  Chocolate was the worst!  The melted chocolate stung and burn my mouth.  So maybe that was part of my grumpiness?

Dr. Wahl told me the steroid rinse she prescribed to help with my mouth issues would cause tooth decay. She told me I would need to be meticulous with my oral hygiene.  So I bought my first sonic toothbrush at Costco on the way home.

THAT THING IS AWESOME!  I have no idea why, but that thing works like a magic wand for my mouth pain.  Anytime I have a flare up, I just pop the toothbrush in and HEAVENLY RELIEF!  Not only that, my sores have HEALED.

Brushing my teeth has become this new addictive sensual pleasure!  And I can again eat ANYTHING.  Hawaiian Luau, here I come!

I haven't even picked up the steroid rinse from the pharmacy.

But I still didn't feel like celebrating the tumor markers.

So I thought about what I *do* like to celebrate.

I celebrate that at my June college reunion, I could not dance without some scary back pain.  But today I asked my best friends to go dancing with me because I can move like a TEENAGER!  (OK, a teenager with very poor dancing skills.)

I celebrate that today I hiked 8 miles with my husband, scampering up steep hills with a healthy pounding heart and inhaling the autumn air deeply and cleanly.  Just over a month ago, I pulled air through "smoky" lungs filled with cancer ditzels.

I celebrate that I can sleep in any position without absolutely no pain -- awkwardly cuddling my son after a nightmare, spooning my spouse, when for most of last year I have been sleeping on my back, without a pillow, so avoid positions that caused me pain.

I swim effortlessly for miles at a time, flip turning, diving, and then crawling over the side of the pool to get out.  In mid summer I was carefully and painfully moving through the pool, one lap at a time.  

I make love to my husband without pain -- something I thought that chemo induced menopause had made a permanent part of my life.

The treatments I have received at Swedish Cancer Institute have been restorative and healing.  I've been gifted with a healthy feeling body, a second youth.  

For all of this I celebrate.

But tumor markers just leave me feeling a bit pissed off.

Tumor markers measure the progression of my disease.   I expected my tumor markers to be down because I felt so good -- clear lungs, pain free.   And I expected to be HAPPY!  I thought the muddy fog that gathers before each oncology appointment would lift and I would return to brilliant blue skies.

But it didn't happen that way.  And that puzzled me for awhile.

Here's the thing.  When I swim, hike, dance, cuddle, and make love, I am ALIVE.  I am grateful for the pleasures of living.  And I can stay in this place of gratitude and ignore (deny) the cancer.  I CELEBRATE every day.

But tumor markers, even when they go down, are never about health.  They are simply about dying more slowly.   

I really enjoy knowing about my disease and my body.  I like the science.  I like visualizing my physiological self.  I like knowing as much as possible about what is going on.  It calms me.  It centers me.  

But it doesn't make me want to celebrate.

Tumor markers are about disease - an incurable, terminal disease.    

I used to picture fighting cancer a bit like solving a crime in one of those TV shows like CSI or Criminal Minds.  We'd have a team doctors who, much like the imaginary crime teams in these shows, would investigate this particular cancer, watch it, scope out it's behavior, monitor its strategy and then swoop in with their own clever strategy to arrest.

But despite all of the great advances and innovation, we can't really see cancer clearly enough yet to do that kind of behavior analysis.  Cancer gets smart and learns how to adapt to our strategies and treatments, but we all we can really do it throw another attack at it and hope the cancer doesn't already have a strategy to work around it right away.

There is no control over the war monitored by tumor markers.   A dip is just a lull - and we all know how the final battle ends.

I am grateful for these moments of peace, when cancer retreats or stalls.  

But I don't feel like celebrating right away.  

But I'm OK now.   Let's celebrate today.

Survivor Thrill

Ever since my stormy weekend, I have been feeling strong, beautiful, healthy, hopeful and radiant.  My Afinitor finally arrived and instead of horrible mouth blisters and skin sores, I feel AWESOME.  No bone met pain, no lung cloudiness, no liver tenderness...   My body feels well oiled and supple.  I can't even imagine illness today.

So I have had a hard time writing. 

Because, while feeling this good,  I have been receiving beautiful, loving gifts from friends in the mail -- flowers from a respected and admired colleague, Rebecca Baldwin, a beautiful Japanese tea cup from my 8th grade teacher and world changing social activist Misa Joo, a matching kimono (arriving on the same day by chance!) from my heart-soul-sister-cousin Kerstin Peterson -- and gourmet salts and music and a palm reading kit.

At work my colleagues are nurturing, kind, supportive and attentive. 

So I didn't know how to write about this.     Is it OK to feel so good and get so much positive attention?  It's like every day is my birthday!    Am I feeling guilty?  Survivor's guilt?

No.  Actually, I am not feeling guilty. 

I am feeling THRILLED!  Some week's you all make having cancer really really FUN.

And I've finally decided that that's OK. 

Much love to you all -
Suzy

Fuck You's and Flowers

Emotions are so slippery now.    They can blow in and knock me over without warning.  Laughter rises easily and bubbles over when Paul and I talk about the speed with which farting can propel you in space.  A "fuck you" is lobbed almost lazily across the dinner table towards my teen.

Emotions used to rise slowly and steadily for me,  unnoticed until I was immersed and suffocating beneath the tide.  

The emotion that overwhelmed me at Friday's retreat was a tsunami.  I felt the space of emptiness and confusion opening just before it hit.  

Am I supposed to be here?  Do I even matter here?  Will I feel this afternoon is time well spent?  Is the goal feasible?  Am I committed to the goal?  Should I be out enjoying this beautiful weather?

The questions cross all of our minds.  

I had never noticed before the energy it takes to suspend our concerns and fatigue with each other (and with meetings, in general).  We are like aircraft controllers, keeping our worries in a holding pattern, fueling them in the air with our limited patience.

  

What if the new treatment makes my skin so dry and sensitive that it will be too difficult to make love?   What if I feel nauseated or fatigued and don't want to focus on my kids?  Do I read enough to my son?  Should I be reading right now to my son?  Should I be making love to my husband?  Should I be working more to engage with my ever-more-distant-daughter?  

These thoughts are heavy orbiting debris, falling, flaming, down, carving craters in my heart.

I have made the wrong decision.  I shouldn't be here.

I push it away.  I listen.  I try to find some gratitude to hang on to.

Each of the colleagues present is so valuable.  These are my world-changing peers, my-let's-not-be-satisfied-until-the-world-is-just peers.   These are my let's redesign-the-whole-dang-system-if-we-need-to heart driven peers.

And they are driving me fucking nuts.  At some point, as a group, we got the idealism tangled up briefly in that performance-ego-stroking game where we cite theorists and nod knowingly.

Anyone who knows me also knows that I am definitely the pot calling the kettle black here.  I have definitely been known for getting high and righteous on acts of academic performance.  So there is no blame game here.

But today, for me, the game-triggered rumblings of doubt and deathly anxiety coalesce into a pretty strong magnitude.  

Shaky, I try to focus on our motivation.  Isn't this, as my colleague from psyshology Deepti pointed out, about ensuring our international speakers of English are supported in a way that allows them to use language confidently?  Isn't it about curtailing the language shaming that can go on in some classrooms?  Is there something concrete we can do towards this goal in two quarters?  

The castles we've spun in the air so far with our goal setting and brainstorming seem so out of reach.

Yes, BUT.

That's how we talk in academia.  It's never just yes.  It's always YES BUT.  Or WELL...    We are trained to add insight, adjust perspective, throw in a little twist of critique.  

Mental masturbation.

Unfortunately, the woman who offers this at this point, is someone who tries so hard, every minute, to not be academically lewd.  She reflects, meditates, questions, listens, absorbs, reads, thinks, reflects, incorporates, and acts according to all of this.  Watching the discipline and sincerity with which she does this exhausts me.

And it's her "And also..."  

"I agree with everything you've said, " I respond. "I know the ideal is valuable and I also need to say this emotion rising up isn't related to anything or anyone here..."

"I am emotional, as well, for reasons not related to what is here," she (empathizes?)

"I AM GOING TO BE DEAD BEFORE ANY PROGRESS IS MADE TOWARDS THESE IDEALS."

I am crying now.

I'm sorry, I have to go.  I have to go and take care of myself.  I don't know where this is coming from.

(I have no idea what I am going to say next.  I feel dangerous.)

A nod of sympathy from the meeting coordinator and I'm running out the door.  My colleagues' gazes are planted on the desk in front of them, some with sadness, others with discomfort.  

I jump into my mini-van and start driving away...  My most-sincere colleague is running after me.  She waves at me to stop - to come back.  I use my hand to brush her away, mouthing...

NNNNNNNNOOOOOOOOOOOOOOOoooooOOooooo!  

In slow motion.

I have never left a professional event in a tantrum before.  I have witnessed others do so.  I think the behavior is unprofessional and inappropriate.  I apologized to my peers and they have been gracious in their acceptance of my apology.

When I got home, I found the most spectacular bouquet of flowers I have ever received.  A colleague from my early days at the college, Rebecca Baldwin, had sent them to me, out of the blue.  She is another incredibly disciplined, thoughtful, integrated and intentional person who taught me that economics is all about studying how people value things, emotions, experiences, events, others...

I was overwhelmed by those flowers.  What a perfect moment.

I think my most-sincere-colleague and I might need some Fuck You's and Flowers to get past this.

The Story of the Traveling Leather Lymphadema Gloves

It's been emotionally cloudy lately, with wind gusts, occasional thunder storms, sun breaks and rain. 

It's exhausting.

And keeping my emotional umbrella up feels a bit like fighting off a sadness-cold.  The sadness is minor, benign, nagging and irritating -- and seems to hang on forever.

I get to ring the all-done bell today.  It's a big loud muster bell on the wall for patients to ring when they finish their radiation treatments.  It's a thing, apparently. 

I'm a good sport.  So I push through my emotional congestion, muster some bravado and really pull off a big pealing

{{BONG!!}}

Clears the sinuses a bit, that does!

The cheers and the smiles from the medical staff and patients touring the halls buoy me.

But there is a moment of pure transformation that happens right as I am about to leave.    Emotional Hawaii.

I don't if she's coming from or going to her radiation therapy, but she walks with the slightly shocked look of the-first-time-through.    Her breast cancer diagnosis is advertised by the lymphedema wrap she wears on her arm. 

Oh!  I wore that!  I say.  Hated it.  What a pain, right?

And look at me now!  I show her my muscled, lean arm, completely free of any swelling.

We talked about the bandaging, the wrapping and dealing with the dirty bandages and wraps.

I reminisced about my beautiful leather fingerless gloves, hand-made by a Pike Market artist and purchased for me by my beautiful soul-sister cousin Kerstin.  They are spunky, beautiful, and practical.  With these gloves I was suddenly a hip woman with attitude -- not a survivor or a patient or a victim.

Give me your address!  I'm going to give them to you.

She protests a bit, offers money -- But we realize what we've got here.  We've got a new tradition. 

She agrees to pass the gloves on to someone who needs them when her lymphedema resolves. 

We'll all pay it forward together.

And imagine the stories those gloves will be collecting.

I am so happy. 

Advice from a survivor? Don't spike your cider and then email your oncologist.

Nobody told me this.  It just makes sense that alcohol and liver mets don't make a good mix.  So in general, I don't drink at all any more.

But when I got the news I would be starting Afinitor, I decided to allow myself a bit of wine for one evening.   Afinitor handouts specifically say that alcohol can interfere with its effectiveness.  And, well, it also causes blisters on the inside of your mouth.  Also not a good combo with alcohol.  

So I allowed myself the wine and a self-indulgent maudlin blog post.  A final celebration.

When I got the news that my insurance had denied my oncologist's request to start Afinitor, I decided to take it as an excuse to allow myself another drink-reward -- a bit of carmel apple vodka in my apple-spice tea.

Spiked cider in hand, I settled down to my computer and CHOSE to check my hospital MyChart portal.    I saw a note from Dr. Wahl asking about the Afinitor status.  Cue in long maudlin self-indulgent note to HER, a bunch of "bring-on-the-chemo-I'm-ready-to-fight-harder-please-help-me-see-my-kids-grow-up" blather.

Variable emotional weather, alcohol and computers are a DANGEROUS MIX.

I've been thinking about the work these professionals do at the Swedish Cancer Institute.

We are a bunch of fucked up emotional nutjobs at times.  Understandably so. 

These people aren't just healers.  They are harbors, shielding us from a few of the waves we create with our emotional winds. 

In response to my please-ignore-that-previous-note-I-see-my-therapist-tomorrow-note, Dr. Wahl wrote:
Hard to ignore that. It's a roller coaster, no doubt. Pace yourself Suzy - this is a marathon not a sprint. I know that you can handle chemotherapy if you need it and I have no aversion to prescribing it if I think it's the right thing. But I'm not there yet.
Hang in there.

What a PERFECT response.

On the emotional intelligence scale, this woman is a genius.

Let go.  Trust me.  Hang in there.  Walk the marathon.

And enjoy the scenery.

 

My pain isn't a bad thing. Seriously!

I've have come to realize that my last posts have led many people to believe I am living day by day and moment by moment crippled with pain or the fear of pain.

More evidence that I am *not* writing well on this blog!  

I am almost 100% certain that I am in less pain than probably 99% of other 47-ish adults on this campus.    That is what is so COOL about my treatment team!

I've dipped into some pain, at very specific moments and in very worldview-shifting ways but for very limit time periods.  But now, because of effective treatments, I have a tiny burning skin sensation on my lower back (radiation) and a slightly heavy pressure in my pelvis that reminds me of being pregnant (a good memory for me).  I take no pain killers at all.

But I will TALK about pain here a LOT.  Because it's now such an important mechanism for knowing.

We of the older-than-45 set have learned that age and aches and pains are all just par for the course. It's been a few years since  I've been able to sleep in a tent on the ground without taking some ibuprofen beforehand.

But I am 47-years old and I have times (still now, with this nasty diagnosis) where I am completely pain free.  My body feels well-oiled, balanced, tuned and centered.

When I peek inside of this body with all of these scans, I see healthy bones and joints -- no deterioration and no arthritis.  Based on my scans, if I didn't have cancer, I would be able to run this beautiful  machine for decades without any need for major tune ups.

Most of us, in this certain age, cannot say that!

What this creates for me is a fascination with my pain.  I struggle not to feel happy or healthy or comfortable.   I feel healthy, happy and comfortable.   I struggle to understand -- and then, when things flare briefly, to navigate the rupture to my psyche and emotions.

So when you meet me on campus -- and I look, well, so healthy, happy and comfortable...  It's because I am!

Isn't that amazing?

I totally think it's amazing.

The Swedes would be PROUD

The "Swedish Cancer Institute" (aka SCI) has a warm, inviting waiting room for radiology.  We are a fucked up bunch back there.  One woman has cancer in her brain and tilts when she walks.  She struggles to finish her sentences.  Another woman has an autoimmune disease that has suddenly riddled her 30-something body with tumors, cut her sight and reduced her mobility (she is recovering now and much better).  One woman has ovarian mets wrapping around her bones like vines, squeezing her and causing excruciating pain.

You can find us by following the laughter.

Every single person -- the nurse, the radiology tech, the doctor -- treats each patient with such kindness and concern.  It's a warm blanket of care.  It's a centered, careful, loving attention.

It's so easy to document our complaints.  How do we document the successes?

I'm going to try.

In radiology, the nurse sat with me and, well, she held me.  It wasn't a physical hold.  She held me with her attention and with her focus.  With her stillness and her heart, she explained to me that she felt that any patient who felt he or she shouldn't call for help was *her* failure.  Her job, she explained, was to ensure that every patient knew they can and should call at any moment for any concern.

The radiology techs greeted me with care and consideration.  Each time there was a shift in who would be on duty, they were sure to overlap and introduce me to the next on-duty tech.  When *one time* there was a small glitch with the computer and I had to sit for a few minutes on the radiation bed and wait, the tech was clearly upset -- not because he feared what would happen to him, but because he did not want *me* to suffer any anxiety.  He was so present and careful and caring.

Errors happen.  But what these radiology professionals illustrated was that it's all about caring how the *patient* feels.  It's not about the mistake or computer glitch or whatever.

The Issaquah Swedish Cancer Institute ROCKS.  I am so grateful I did not go anywhere else.

Imaging was good.  But "SCI" is AWESOME.

The patients I connected with in that radiology waiting space were so grateful for the warm space created for them.  Five of them, independently, and unsolicited, talked to me about how they dreaded treatment at first, but that after starting, starting looking forward to it each day.

I don't want the burns and scars that come with prolonged treatment.  But I have to admit that I will miss this women and the community they build back there.

We of the radiology waiting room are survivors.

Thank you, Issaquah Swedish cancer professionals, for supporting us.

Bravo.

In gratitude,
Suzy