What really makes me sick.

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I lost over 12 pounds in one week. I was extremely food averse, wearing diapers, afraid to even venture to my oncologist’s office because I was pretty certain I would soil myself. Recovering from this bout of chemo induced hell has been tough.    I have migraines, vision problems, dizziness and generally stunning muscle weakness.

And despite all of this I’m kind of proud and excited about being skinny.

That sucks.  It really sucks.

There is this worm that has crawled into my psyche and refuses to die.    I throw slogans and mantras at it about power and body pride.    I believe in strength, in powerful women, in outrageous confidence and originality.

And yet there it is.  This nasty little invertebrate that is a bit disappointed that I’m gaining weight again (a sign of HEALTH!),   It’s excited about the coat hanger look I’m sporting, even though it means a simple beach walk of more than 2 kilometers is kicking my butt.

How is there any hope of recovery from these worms society has seeded in us?  These micromessages of inadequacy seep into our genome and embed themselves so deeply into our physical sense of self that as a stage IV cancer survivor, who knows that death and weight loss are hopelessly entwined,  I am still haunted by …what?  Pride? …as I lose my healthy self to a sore infested, skin peeling, diahrrea stricken skeletal look.

I think of women struggling with eating disorders.  I think of friends struggling with systemic discrimination cutting them with messages about not simply their sexual attractiveness, but their very worthiness.

There is no cure for us infected.  Like survivors of a chronic illness, we need to work every single day to support ourselves and each other against the unhealthy messages that have become part of us.  Our cancer.

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How am I going to be?

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Food aversion is what really makes me feel like a sick person.

I mean, here I am, sitting in my diaper on a bucket list trip to Hawaii, carrying around a small paper bag in case my body decides to offer a sudden “readjustment.” My hands, feet and lips are tender to the touch. But I FEEL GREAT. I had a lovely Beecher’s cheese sandwich, complete with ham and special sauce. I sipped a delightful tropical fruit drink (the non-alcoholic option to the complimentary Alaska Airlines Mai-Tai). I’m well rested and happy and grateful.

Four weeks ago, when I started this treatment, the food aversion was immediate. My appetite was gone. Bam. Five little pills and…Nothing sounded good to eat. I’m so grateful that Peter and Kristi Middleton-Youngs took me out to eat the night at Monsoon before I began this. (Monsoon, by the way, is just simply superbe. One of my favorites of all time. And it’s right here in downtown Bellevue!) I didn’t feel bad those first few days, though.
But the lack of appetite along with the food aversion was first. Then a general feeling of malaise, like morning sickness with my first child. Then a bit of vomiting, despite anti-nausea meds. And the onslaught of the big “D.” Then came Armageddon – burned lips, feet too tender to stand on, vomiting (nausea was controlled by meds), and the BIG “D.”

At the first sign of food aversion, I was already asking myself the question “how am I going to BE with this?” It was a mixed up complicated emotional question, filled with identity angst at stopping work, at becoming a “sick” person for the rest of my life – and a search for direction. I thought, at first, that my angst was about figuring out a new identity, a new path forward in this clearly-too-sick-to-work phase.

One of my best friends, who takes care of her wife, kids, library, food bank, book drives and MANY other fulltime jobs, had some really good suggestions for things I could do within my new non-working status. It was immediately clear that even one of her activities would be too much commitment for me. It helped me realized I was on the wrong path.

My community at work and the work of teaching itself gave me so much fulfillment on so many levels. I’m stopping work because I can no longer work, not because I am looking for something new in my life. In fact, I probably should have stopped three months ago. So starting a new job …including a new identity, isn’t really going to work. Small ahah.

Then came the storm. Physically, I was a small one woman kayak caught in roaring rapids, banging against rocks, rolling upside down and gulping air between waves of water in my face. Every day, as things got worse, I would think of my parents.

My dad’s struggle with cancer was horrific. He lived for a couple of YEARS in the agony I spent this one week. His lips were dry and cracked. He could barely walk. His key staples were Ensure milkshakes and lip balm. My normally “robust” 260 pound Dad was probably all of 90 pounds when he insisted on buying the riding lawn mower for my parents’ 10′ x 40′ lawn. (Me to lawnmower sales rep: “How much do you have to weight to trigger that safety turn off? Are you SURE the sensor will know if a 90-pound man falls off?”) Dad actually did drive off the edge of the lawn in his 90-pound state and got stuck. His 85-year old neighbor rescued him.

Dad was FIGHTING. And he was determined to win — to the point where his body was frozen into place, skeletal and withered, leathered and hard, on his bed. He refused to take more than a minimum of pain meds or anti-anxiety medication because he didn’t want to let down his guard. He sipped small tastes of water through a straw and kept his heart beating with a pacemaker defibrillator.

I’m not going to go that way, fighting death at the expense of embracing life.

This week, with the Xeloda nightmare, I saw that line. I asked myself, “if this were the only treatment that would work to combat my cancer and these side effects were unavoidable, would I continue to treat it?”

The answer was easy. No.

Nope.

No. no. no.

I’m not at that all or nothing point. So maybe the question is not a real question. It felt real while I was experiencing the side effects. As it is, we’re running a test to see if I have a genetic inability to metabolize Xeloda and if that’s not a problem, we’ll try a much lower dose. And, the drugs that can really help me, Perject and Herceptin, are still clear options on the table with negligible side effects.

But these last few weeks were the first time I understood what people mean when they say someone “fought hard” against cancer.

I don’t want that.

I want to be my mother.

My mother never fought her disease. The woman had so many near death experiences she could be the star of her own TV medical drama series – emergency quintuple bypasses, severe allergic reactions, rare bacterial infections of the throat, massive internal bleeds (my mother could make the most gruesome bloody vomit scene on Grey’s Anatomy look commonplace), insulin shock, and what should have been massive general organ failure.

But mom was never a fighter. She was a “liver.” Ha ha. OK. Sorry. See, that’s funny because she ended up dying of liver failure brought on by a rare autoimmune disease called Primary Biliary Cirrhosis.

The point is, mom LIVED.

She woke up one each of her worst days intending to love her people, taste good food, cuddle her dogs and laugh at bad jokes. She had good days. She had bad days. She had some fighting days, too. These were days when she wanted to be present with us, her daughters and her grandkids, despite maybe not feeling so well. She’d rally her energy, find her love and beam out a smile.

But most of the time, she kept her energy and her body as balanced as she could to enjoy living as much as she could. She worked to live. She didn’t fight dying – or die fighting. And she told me, multiple times, that she wasn’t afraid of dying.

 

My mom loved white river rafting. She took a guided tour down the Deschutes with 4 (maybe even 5?) class rapids and was dumped right out of the boat. You know that picture they snap of the group going over the big rapids on the tour? In our picture, you can see mom’s foot sticking up out of the water.

She got trapped under the boat and she thought she was going to die. So she reached into herself and calmed herself down. She stilled her mind and her body and stretched herself out straight.

And she popped right up to the surface. We’ve a happy ending to an exciting adventure rather than a morbid picture of my mother’s dying foot lifted high in the water.

I will not fight.

I will still myself, find calm and peace where I can.

And sometimes I will be taken up in dangerous rapids, I will fall out of the boat and will have to hold myself tight and just hope a boulder doesn’t come crashing into my head. I don’t think I get a helmet on this trip.

But my big aha this week was that figuring out what do do or who to be with all of these transitions is really all about figuring out how to stop trying.  Just be.

And I supposed, it’s really the same “ah-hah” I’ve been having over and over.

A really good meditation group seems like my first post-work commitment.

The Village

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This week was my first big stumble.  It was so gratifying to have so many people available, ready with wishes and good cheer, and also ready to lend a hand, an arm, or whatever else was needed.    When I posted about my bad chemo spell last week, it was like falling into pillows.  I felt supported, warmed.

I didn’t need everyone’s help right away, but I felt you there.  I felt your support and your willingness to be available.

It feels really good.  Healing.

There’s a small army of parents and friends taking care of my kids this week.   And I really haven’t been on top of anything, so I barely had a complete plan ready at 10pm last night.   I hacked out a typed letter of instructions for the caretaking parents, friends and neighbors (It’s a team of eight!) and sent it out at midnight.    There are a lot of gaps.  There’s a lot of undone stuff.    But you know that saying “lean in”?  Well, my friends are leaning in.   And I’m leaning back against their support.

It feels good.

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Diapers are Awesome

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Putting my first diaper on was like immersing my butt into a warm, loving hug. Why would any toddler want to stop wearing these guys? They are just cuddly comfy.
I thought I was done with the big D, but seems he just likes to lay and wait, lurking in a shadowy corner of my physiologic wellbeing for that moment when my guard is down.

I’m learning, too, that willpower is not a good thing for the physiologically impaired. By the time we figured out we could pull off this trip to Hawaii, I was way behind in my task list. The team of parents caring for my kids didn’t even receive instructions before midnight last night. And this morning, bleary eyed and dried out, I rushed around getting ready to leave and left the house without eating.

My body doesn’t like it when I don’t eat. All that water I’d been trying to down before getting on the plane came gushing out in a surprise attack. No warning! Boom. Like a baby spitting up. Just like that. Note to self: include an empty paper bag in the self-care kit.

Now this happened to be at the ONE moment when Francois had left me with the luggage while he ran off for one last trip to the restroom before boarding. So I’m sitting there helpless in my little puddle with all of the bags at my feet. Thank God it was just water.

But I’m seated now in seat 26D. I’m hydrated. Sipping apple juice along with that water so I don’t overwhelm myself. I had a delicious Beecher’s breakfast sandwich and a small nap.
I feel MAH-VEL-OUS.

And I’m on my way to Kauai!

Flavors of Pain

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It’s been a crappy cancer week. Digestive discomfort — food aversion, mouth pain and diarrhea have gotten progressively worse, day by day.

Think acid. Burned, blistered, peeling lips. Think multiple changes of clothes each day due to unpredictable explosions. Think a diet reduced, by the end of the week, to small spoons of applesauce and liters of Gatorade through a straw.

Each day I awoke with the expectation that this was it, TODAY, the side effects would ease. TODAY I would go to work. TODAY I would be able to run an errand and actually get out of the car without fear of a sudden public disaster.

And each day it got worse.

And this is my week OFF of chemo.

Lessons:

  1. Yoga pants are really absorbent.
  2. Vaseline is the best.  Plain, simple and adds no additional layers of pain.
  3. Q-tips for all ointment applications.  It’s like having a little disposable artist brush in your hands.  Delicate strokes.
  4.  You know the happy yellow mustard poo your infant produced when it was a “good day”?   (Bad days were green and acidy.)  Yellow still hurts like acid.
  5. MoliCare Super Plus Adult Diapers are the best rated no matter what review you choose.
  6. “Pain” is a really complex concept.

When I was pregnant with my first child, Delphine, I had this amazing prenatal instructor who taught us that managing pain was really a question of figuring out our own relationship with pain.    We learned that most of the pain we experience is really a stress response and if we could understand that stress response, we might be able to control, to some extent, the pain.

It’s an interesting conversation starter.  For many of the people closest to me, the physical discomfort of pain itself is the stress.  And the fear of more pain or continued pain exacerbates it.  So pain relief is usually always the best pain response.

Physical discomfort is not my biggest stress response with pain.  My biggest stress response is that the pain signifies that something is WRONG.  Pain is my body communicating to me that something needs to STOP or CHANGE because things are NOT OK.    So once I understood the physicality of childbirth, exactly how my muscles in my uterus worked, how the cervix opened, and such, I no longer thought of it as pain, but rather discomfort.  Now this was a “discomfort” that had me doubled over and gripping the bed sheets with closed tight fists, mind you.

So I’m realizing that when my medical staff asks if I’m in pain, I really only report things that scare me or that I don’t understand.  Up until this point, that’s primarily been bone pain.  And it’s been pretty much gone since the Fall of 2014.

When I think I understand my pain, I think of it as data.  And not having that data makes me nervous  So when my oncologist recommended a light narcotic for the pain I was experiencing with the side effects of this chemo, I thought I’d wait.  I felt a need to feel the pain in my lips so I wouldn’t hurt them further by opening my mouth too wide.  I felt a need to feel the pain in my feet so I wouldn’t work them too hard.

It’s probably a good idea not to stretch horribly blistered lips out over a big grin.  But I’ve realized now that I have no data to say that ignoring the pain in my feet would ever be a problem.  In fact, inactivity for a week might be more of a problem.  Pain probably doesn’t mean what I’ve  be trained to believe it means anymore.

I definitely called the lips and the feet “pain.”  There’s a clear burning trauma that makes it an easy call.  But there’s another thing I stopped that I hadn’t really considered as a result of pain.  I stopped eating.  I called it a food aversion.  But what a food aversion really is, I think now, is a pain response to eating.

The diarrhea was still getting worse on Friday.  I was looking into my travel insurance and what I was going to have to do to cancel my planned bucket list trip to Hawaii with my husband.  And then I read that sometimes doctors prescribe painkillers for diarrhea because it slows down the gut.

So Saturday morning I tried a painkiller.

And I suddenly had appetite.    I had the feeling that my burned, tormented gut had been cured.  I ate a quesadilla with beans and cheese (cut into tiny 1 cm pieces to avoid my lips).   I felt CURED.

I wasn’t cured.   I vomited three times to add the the joys of the ever present big D.  But I FELT better.  Before,  I hadn’t felt like I *could* do the Hawaii trip with Francois.  I thought it was because it’s just uncomfortable and nasty to be incontinent and food averse.  But with painkillers, I was suddenly researching adult diapers…and eating.   The vomiting, actually, only happened when I let my stomach stay empty too long.

And today, I AM better.    It could be coincidence.   Maybe it just took this long for my body to heal.  But I was getting worse and worse every day — and now suddenly I’m getting better.     Today there’s been no sign of the big D and it’s almost noon.

So I’ve learned that I need to consider any “discomfort” as “pain.”  And when “discomfort” interrupts my life, addressing the “pain” first instead of only focusing on the cause might be the best approach forward.  Because there are a lot of nuances to pain that I am just not very literate with.

And developing that literacy can really be life altering for me now.

I am feeling SO MUCH BETTER.

And grateful to the pharmaceutical companies that have made that possible.

 

 

 

 

 

Science, Love, White Light and Prayers

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Here’s our starting line.  That increasingly haunting feeling of decay over the last three months in right there in the almost vertical upward slope measuring tumor markers.

It’s definitely felt like a vertical three months.

My body tells me we’re heading back down now.

The scientific research that has brought me HER2+ targeted therapies like Perjeta and Herceptin, and uniquely acting chemos like Xeloda, is working.

And I predict we’ll see those results documented in our next blood draw on March 22nd.

But here’s what you can do for me today.

Pray.  Send that White Light.  Fold out your love.    Send your healing energy.

Visualize those cancer cells and alter their course with that love.

Apparently it’s really rare to have a cancer like mine suddenly change from HER2- to HER2+, to move from 6-month prognosis to a heck-who-knows-anything-is-possible space.     And we don’t have scientific explanations for that yet.

The more of my cancer that transforms to HER2+ the better my outlook.

So today I’m going to visualize that transformation  to HER2+ as powered by your love pushing gently on the course of a raging biological river, sending it over to a new landscape with a better horizon.

 

 

Feeling GREAT on a Potato Diet

I have to smear on the Carmex before I smile or I crack my lips and end up looking like the clown from Stephen King’s  It.

The tiny wannabe blisters in my mouth scream at the hint of salt on anything.

Despite a strict diet of ONLY bananas, rice, toast, yogurt and peeled white potatoes, predicting my digestive adventures for the day is.(forgive me) a crapshoot.

And I feel GREAT.

I.  FEEL.  GREAT.

My energy is rising.

There’s a systemic shift.

I finally found an image to describe this to you.

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OK.  Now that I think about it, maybe this isn’t the best image.  I’ve never really thought about how much E.T. looks like a dying breast cancer survivor — bald, boobless, skinny, muscles atrophied, sunken eyes from dehydration, swollen belly from ascites, skin leathered from radiation.

Forget that image!

Here’s today’s image for you instead:

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OK.  Sorry.  I had to run out of the room there for a moment and barf.  It was just a little barf.  I take Prilosec and Pepcid in the mornings now so didn’t think I needed that Zofran dose. Well now we know!  I still have to eat a bit of potatoes to put something in my stomach. I’ll right back.

OK.  Back.

God, I love potatoes.

ANYWAY…

I.  FEEL. GREAT.

Imagine that part of the E.T. movie when everyone thinks E.T. is dead.  You remember it.  Elliot (or is that Pete’s Dragon’s friend?) is bent over his incubator/casket sobbing and then suddenly his heart/love/soul center turns on.

That’s what it feels like.

About two weeks ago, I started taking a painkiller in the evenings to suspend the grinding, chronic, pain of decay.  I could feel my liver sputtering and my body responding with cramps, myalgia, fatigue, and, well, a special kind of stomach discomfort that reminded me of morning sickness in pregnancy.

But now there’s a light of life and growth, an energy and a comfort, even in my side-effect discomforts, of a body growing healthier.    Sleep is restorative.   Muscles beg for exercise.  Lungs breath deeply and freely.  I have NO PAIN.  Zero.  Nada.

I’m taking stairs and still able to talk at the top.  I’m going for gradually longer walks and finding muscles that need practice rather than a body that needs respite.

We’ll figure out the side effect stuff.  It’s small potatoes.

And believe me, this week, I know my potatoes.