Fortress

I'm lying in bed with my eyes closed, breathing slowly, trying to keep the panic at bay.

This happens sometimes, when it just hits me ... oh my God I have cancer, I have cancer, am I going to be okay ... and my mind goes into overdrive, certain that my demise is imminent.  Faith and hope fall away and I'm left with only cold despair.

I have no reason to think that everything won't turn out okay, but sometimes I can't keep my awfulizing brain from running away from me.

So I lie in bed, breath, and reach deep.

Deep down into the core of me, the part of me that is strong and fear cannot penetrate.  I picture it like a fortress of stone - smooth walls, secret entrance - no way for the fear to claw its way in.

I sit in my smooth, safe sanctuary and I wait for my heart to stop racing, for my breathing to slow to normal.   Sometimes I talk to God here.  I don't ask Him for anything; that feels selfish and wrong.   Instead I have a little conversation, a Hey-How-Are-Ya kind of thing.  I update God on my beautiful family, on all that I'm grateful for. Then I say hi to my Dad, tell him how much I miss him.

Eventually, it feels safe to come out.   I'm still a Mom With Cancer, but the winds of peril have died down, and I am able to go about my day with gratitude and peace.

I will not let the fear be stronger than me.  I will not.

It's sneaky, though.  It hits me during the tender moments, the extra-special-loving ones, and it infuriates me that it tarnishes sweetness with its cold fingers.  

Finn slipped his hand into mine the other day as we were walking across a parking lot.  He hasn't done this voluntarily in a while.  "I love you, Momma," he said, looking up at me with a grin.  I grin back at him, my heart bursting with love and then WHAM - the cold finger runs down my spine:  don't love me too much kid.  I don't know if I'm gonna make it.  


It makes me angry, that fear is robbing me of a tender moment, and I fight back: well, I'm here now, dammit, and you don't get to own this one.  This one is all mine.  

It's hard to feel positive; I'm almost superstitious about it.  I don't want to presume that I'll be fine, maybe that's my way of protecting myself, keeping my expectations low, so if I get bad news after the surgery I won't have as far to fall?

I know, intellectually, how ridiculous this line of thinking is.  I try hard not to taint the moments I have here and now with this mental jockeying - if I think this, then that will happen - because it's exhausting and futile and it pushes me away from all the beauty that's in front of me right now.

The bottom line is I will have surgery on April 4th to remove what is left of the tumor, and then we will know if it's all gone, mostly gone, or if further treatment will be necessary.   It's up to me how I fill my mental space between now and then, and I'm trying to keep it full of hope, but it's hard and it takes constant vigilance.

I was watching Greta run through the yard yesterday, her long, coltish legs pumping with strength and speed.  Finn ran behind her, laughing with his head thrown back:  wait up, Sissy, you're too FAST.   They collapsed onto the lawn in a pile of giggles, arms and legs akimbo, soaking in the unseasonably warm weather.

I took a mental snapshot of that moment, that pure, innocent beautiful moment, and I stuck it up on the wall of my sanctuary, one more arrow in my quiver against fear and despair.

It's okay that I can't be strong all the time, that sometimes the fear grabs me and won't let go.  As long as I keep pushing back, keep replacing fear with faith as much as I can.

Cancer is scary.  Of course I feel fear.  I have to remind myself of that - I can't always be a serene, grateful, poster-child-for-how-to-handle-shit person.  I have to accept the fear, roll with it, through it.

When the tears need to fall, I let them fall.  When the laughter comes, it comes from deep inside of me, from a place of real gratitude and hope.  That's what cancer does: it hones everything down to its essential parts - the scary ones and the beautiful ones.  Everything becomes so real.

So I spend my days with this constant push-pull between fear and hope.  I try to soak up the beautiful moments, leave them untainted by fear. I pray and I try to let it all go.  

Sometimes it works. Sometimes it doesn't.  And life marches on either way.

Just An Update on Where My Head And My Heart Are These Days

I don't have any profound writing in me today, so this is just an update.

We consulted with the Head & Neck Oncology Surgeon (one of the best in the country) last Friday, and we are all in agreement that the remaining lump in my neck needs to be surgically removed.  I'm four weeks post treatment now, and it is still the size of a small almond.

The doctor explained that this surgery is made a little trickier because we're doing it after radiation, so the skin and the tissues involved aren't in tip-top shape; this will likely prolong my recovery period slightly, too.   He then went on to say quite casually that he will remove the lump, the lymph nodes surrounding the lump, and my jugular vein on that side.

My brain went white at this news, and I placed a hand gingerly on my neck.

"Isn't the jugular vein something you need?"  I asked, fearfully.

"Nope," he answered, calmly. "You don't need two, and we're just taking one of them. In fact, it used to be standard procedure to remove the jugular vein during this procedure, now we only do it depending on the placement of the mass".

Right. Whew. For a second I was concerned.   READ:  sarcasm

I will have another CT scan and pre-op physical the week before the surgery, which is scheduled for April 4th. The external skin on my neck is completely healed, at least as far as I can see, but I still have a lot of internal mouth/throat pain from sores/burns, so those will need to heal up more for us to stay on track and have surgery on the 4th.

I will be in the hospital for two or three days, and then likely in full recovery mode for a couple of weeks after that.

These are all the facts, all straightforward and simple-sounding.  They don't touch how I feel about all this, which I'm still trying to sort through.

I'm mostly tired. Emotionally tired. I'm tired of feeling like there's just one more thing between me and recovery.  I'm tired of worrying.  The fact that the chemo and radiation didn't fully destroy the tumor worries me.   The surgery, while I'm in the best hands possible, sounds draconian and scary to me.   The voices that whisper bad outcomes to me are harder to keep at bay.  

I'm tired of pain. The inside of my mouth and throat are in near-constant pain.  The medication I take helps a lot, but it doesn't get rid of all of it (which I'm grateful for, actually, because I do not feel like a drooling vegetable on this pain medication).   I still receive most of my calories through the feeding tube, but on occasion I have a drinkable yogurt, cream of wheat or some finely diced scrambled eggs.    I can only drink water and - interestingly - Pepsi - comfortably.

Basically, this has been going on since early October (when I found the lump) and I'm Just. Plain. Tired.

It's hard to sustain strength, hope and positivity that long.   The longer this goes on, the more my worrying gets a foothold.  Did I mention I'm also tired of worrying?

There is one thing I'm not, though, and for this I'm grateful.  Despite how this post may sound, I'm not feeling sorry for myself ... feeling like "why me?".    I haven't felt that way once through this whole thing.   It's my turn, and I'm going to stand up and face it without whining about the unfairness of it all.  This sort of thing is NEVER fair - why would it be more fair to wish that it happened to someone other than me?

And so I'm in a waiting period, again.  I'm hoping that my mouth/throat do heal enough to allow me to have surgery on the 4th.  In the meantime, I will do what I've been doing: sleeping, reading, making jewelry and praying.  

I did end up losing most of my hair in the end.  After radiation was complete, which was a real kick-in-the-pants.  I'm not bald on top, but it's so thin there is very little I can do with it but wait for it to grow out.  There is too much hair on top for a wig, but not enough hair on the bottom to NOT look like a cancer patient.

For some reason I wrote that last paragraph with tears streaming down my face.  That's how close to the edge I am these days.

On a positive note, though?  Yesterday my Mom took me shopping and I slip easily into a size that I haven't worn since high school.  I'm not gaunt - at least not yet - but I am damn skinny and it's nice to walk into a store and have every. damn. thing. look good on me.

So that is where I am.  Thank you all for listening to me, for hanging in there with me.  It helps to vent it all here, although I'm also tired of coming here and writing about cancer.

Someday I will write about what it's like on the other side of cancer, though, right?  Right?

That is my wish.

What It's Like To Be A Mother With Cancer

Having cancer has changed just about everything about what it means to me to be a Mom.

There are the more obvious, expected changes of knee dropping gratitude that I get to have these small people in my life.  When the definition of 'forever' suddenly changes on you, and you realize you may not have all the time that you thought you'd have, gratitude for what I do have is more powerful, more meaningful, than it ever was.

I find myself  watching them play, overcome with awe and their mere existence.  How is it possible that they are even here?

Before cancer I would have moments like that, but they were fleeting and they weren't felt all the way deep down in the core of me.  And the moments of annoyance, irritation or frustration far outweighed the moments of awe.  I mean far outweighed them.

I can only think of one time in the past two months where I got really angry, and it was because Finn had dumped toothpaste all over Greta right before bedtime.  Getting angry in that circumstance is good parenting.  I used to get frustrated if they didn't move fast enough to get in the car, if they made a mess while they drew, if they bickered over some imaginary game they were playing together.  Basically, I was a Mom who was 'short' most of the time, now that I can look back at it objectively.  Having to fill a long Sunday with no plans was a chore; I would lie in bed with a pit in my stomach and think, how am I going to get from one end of this day to the other?   Now, that same Sunday is a gift.  Pure and simple.

I am also more of an absent Mom.  Maybe that is why it's easier for me to have patience when we are together, or at least part of why.  I was determined that my kids wouldn't have to endure a sick, sleeping Mom more than they absolutely had to.  It brought back too many horrible flashbacks of a sick Mom who slept all the time because she was hungover.  I didn't want my kids to go through that again.

I'm lucky to have help; my Mom comes almost every day, and we have a fabulous sitter who shows up after school everyday around 3:30pm to get the kids off the bus, get their homework started, play with them when they are done.   I am upstairs napping every day from 3:30 to about 5pm.  I need a big morning nap, too, from about 9am to 11am.  My body is so slow to recover from the ravages of chemotherapy and radiation (although no slower than most, I'm told this fatigue is normal) that I need this much sleep during the day - plus a full ten hours at night - for me to function.

This means I spend a lot of time upstairs listening to my kids play with other people - with my Mom, the sitter, Steve.  I lie in bed and hear their giggles as they tickle each other, their shouts of triumph when they figure out a homework problem, their smack talk as they play their favorite game - Stratego - all without me.  Nowadays when they need something, they are more apt to call for Dad, or Mimi (my Mom) than me, even if I'm sitting right in front of them.

I try to make sure I sit around the table with them every night for dinner, even though I can't eat, so I can hear about their day; much of which transpired right beneath me as I slept.  They babble on about doing things I used to do with them.  Every now and then Finn will thoughtfully cock his head to the side and say, "Don't worry, Momma. You can play wif us again when you're done wif the cancer."

The thing that amazes me the most is that I'm not resentful or angry that I can't be with them more.   I think it has been good for all of us to have me not be the focal point of everything.  A lot of my previous anger and resentment came from having to be in the middle of everything, all the time ... from being the Keeper of All Knowledge, whether it was where the socks and shoes are, to where the dentist's office is - all this information was packed into my head, alone.

Now Steve can do all the things I used to do.  And more.

The kids are more autonomous without me running around behind them all the time, pretending to let them do everything on their own but basically leaping in every time they didn't do something fast enough, or to my liking.  They are much more independent, and because of this their self-confidence has never been higher.

The old me (or at least my perception of the old me) would have had a hard time letting go, I think.  I had a love/hate relationship with being the center of it all.  It gave me a sense of being needed, for sure, but that was purely for me, really.  It held the kids - and Steve - back, because they could never do anything as well as I could, or at least that is how I made them feel with my constant corrections, or jumping in and doing it myself.

At the end of the day, when the kids plop on my bed and we read stories and exchange back scratches, I am moved almost to tears (and sometimes all the way to tears) at how lucky I am, how blessed we are.   I do have moments when I wish I could be more present for them, but I know my job now is to heal.  I can't do it all; I never could.

Being sick has taught me to stop trying to be everything to everyone, to do it all.  My little family is far more capable than I ever gave them credit for.

In the darker moments I'm glad for this, because - God forbid - what if they have to learn to do it all without me?   I expect to fully recover from cancer; I hope and pray everyday that I do.  But it's such an odd thing to sit and watch Finn - his little face screwed up with concentration - put his shoe on all by himself and think: good job, kid. There's one less thing you need me for.

I can't help it; that's where my mind goes.  I'm able to move past the darker thoughts, eventually, but sometimes when I'm lying up in my bed, trying to nap, all I think is "I have cancer.  I have CANCER."

That's part of my reality, too, one that I may never fully adjust to.  But I'm trying.

I'm Still Here

Two weeks after the end of radiation and chemotherapy, and I'm already stamping my impatient existential foot.

I want to feel better so badly.  But how long this takes is not up to me.

I'm starting to notice small - very small - improvements here and there.  A little more strength, a little less tired.  I have to remember when I have a good day that it doesn't mean that I'll have nothing but better days from here on out.  Because the next day I can backslide again.

The doctors have been right about everything else, and they were right about how frustrating this stage of the process is, too.

There are still hurdles to overcome in the future, although I try not to dwell too much on anything that isn't directly in front of me.  The lump is still there, which could mean a number of things, but hopefully means that it is "rubble" from the tumor imploding in on itself after all the radiation.

To find out if it's rubble or if it's more, I will likely have surgery in about a month to remove the lump.  After everything else I have been through, I'm hoping the surgery won't feel like too big a deal.  But it's one more obstacle between me and DONE.

I am not going to talk about what happens if they find cancer in the lump after they remove it.  I have to work hard to keep the awfulizing at bay.  Why is it so much easier to be certain of the worst outcome?   Faith doesn't come easily to me these days.  I wish the truth were different, but I have to work at faith.  When I feel it settle over me like a gossamer cloak, I wish I didn't have to struggle so hard to find it.

But I'm not going to stop trying.

I am pouring myself back into my jewelry; it's one of the only places I turn that brain of mine off for a while.  I made myself a pretty little copper bangle, stamped with lyrics to a Jeffrey Steele song that I love (modified somewhat for space requirements) to help me remember that it is through the darker parts in life that we grow, that we find grace and peace:

"there is a door to light and grace/keys are in the darkest place"

If you like this bangle and want to customize one for yourself (or a friend), you can find it in my Etsy shop by clicking here.

I'm so grateful for the ability to create, to watch my hands mold wire or metal and create something from nothing.

Other than making jewelry, I wait.  I wait for consultations with surgeons.  I wait for the energy to return so I can go out and experience the world for a bit.  I wait for the pain to subside, for the good days to outnumber the bad ones.

And they will.  Soon, I hope. They will.

Waiting to Unfurl

The past couple of weeks I curled into myself, tightened up into a ball, hardened my shell.   

First it was to get through the last part of treatment.  Being snapped into that radiation mask those last few times was the hardest thing I've done through this cancer journey.  Climbing up onto that table when every cell in your body and mind is screaming RUN! required me to dig deep, use every tool I've got.   

But I did it, and I'm proud of myself for that.

The doctors told me I wouldn't feel better once treatment stopped.  They said I may even feel worse for a couple of weeks, because my expectation would be that I should be getting better day by day.  "It will be at least three weeks before you start noticing daily differences in how you feel,"  they said.

They were right.  Both that I don't actually feel better now that treatment has stopped, and that my expectations  that I should feel better are making me feel worse, at least mentally.

I'm so, so tired.  I'm tired of fighting.  I'm tired of brave and strong. 

I just want to get up in the morning and fix my kids' breakfast, go to the gym and then do some grocery shopping.  I want to drive my car.  I want to bite into a crisp apple or a gooey slice of pizza.   I want to cradle a toasty Starbuck's latte between my hands and anticipate its deliciousness.  

I start to unfurl, sometimes; I'll peek out from behind this self-protective and simple world I've created for myself and see the world whizzing by like usual, people rushing from here to there and from there to here.  It exhausts me, and I tuck my head back down to wait.

One thing I know for sure is that the woman who will emerge from this cocoon is not the same woman who began this journey.  Just about everything about me has changed, at least mentally and emotionally.  Even physically - I've lost so much weight that I weigh what I did my senior year in high school.   

I believe, though, that the woman who emerges at the end of all this is the real me - stripped of pretenses, of bravado.  All of my priorities have shifted.  I have spent so much time unable to be present for my children, upstairs curled in my ball and listening to them laugh with sitters, play games with my Mom or have movie night with Steve - even if I todder downstairs for these things I'm not really present, I'm so very tired - that being with them without Cancer in the way will be the biggest gift of recovery.   I want to be there NOW, and I still have to wait.

I'm not online much.  If you have sent me an email, tweet or Facebook message and haven't heard back - I'm sorry.  I am reading them all, and your support makes this part of my recovery tolerable, makes me less isolated, less depressed.  But I can't respond to everyone, and for this I'm sorry.  I drift off to sleep after about four minutes of typing, wake up and can't remember what I was doing.

The woman who emerges from this cocoon will be stripped down to the raw essence of who she is and what she wants.  I suppose this is a gift, because for so long I navel-gazed about the meaning of it all, what I want to do with my life, how I can make the most impact in the world.  

I don't care about any of that anymore. To make the most impact in the world I need to hug my children. And what do I want to do with my life?  Live it.  The meaning of it all?  Appreciate everything you have while you have it.  Always.

It's so simple it's almost laughable.  I knew these things before, of course, but I couldn't feel them. 

For now, I will stay curled up in my safe little ball for a while longer, waiting.  I have faith in the doctors, and if they tell me it takes three weeks before I start to feel better, then I will wait three weeks.  I will wait longer if I have to, but I hope I don't have to.  

I can't wait to be back in my life.  To laugh on the couch with my kids, to have a family dinner, to make oodles and oodles of new jewelry.   

The simple things that were always my biggest gifts, it just took the jarring experience of cancer for me to notice.

What Do Vlogging and Kung-Fu Movies Have in Common? THIS:

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I tried to Vlog  (for the one or two not in the know... "Vlogging" is when you Video a Blog.  Hence:  VLOG.

I don't think I'll be vlogging again, but now that it's done I'm too stubborn to back down, and I'm posting it "as is".  The sound doesn't track to how my lips are moving, which gives it an interesting artsy Japanese Kung-Fu  movie effect. I'm just gonna pretend that's exactly what I was going for.  

If it gets too disorienting, you may find it easiest to close your eyes and just listen.  And avoid operating heavy machinery for 2-4 weeks.  Like carpools to the kids' events or vacuum cleaners.  Certainly not those.

Anyway, this is my attempt at a big, giant, in-person THANK YOU for all the support you have given me and my family over the past few months.  You guys ROCK.

Someday soon I hope to be back on track, blogging away (the traditional way) with my usual insatiable enthusiasm. 

Until then, please know you are in my mind and on my heart.  Thank you.

-Ellie

Thank You, Cancer

As I lie on the bathroom floor in the middle of night, sick to my stomach and pressing my face into the welcome cool of the tiles, it is hard to think of getting cancer as a gift.

And again, when I'm strapped down into the radiation mask and it is digging into my increasingly red and sore neck - the idea that cancer is a gift can seem very far away indeed.

I'm tired all the time.  Typing this post will take me several hours, because I can only get a few sentences in before I drift off to sleep.

The worst of the symptoms are in full swing now, as I head into the home stretch.  I count that I have only seven more radiation treatments, and the thought of strapping myself onto that radiation table seven. more. times. is almost more than I can bear.   Yesterday, I had a panic attack in the mask; I'm surprised it took me this long.  I just couldn't take one more second of the screeching sounds and searing heat.

The feeding tube was put in place last week; I finally have hang of how the feedings work, and am grateful for the extra energy getting enough calories (or almost enough) provides.   But I will never, never, get used to the idea that I have a tube that goes directly into my stomach.  It's kind of cute, actually - it's called a "Mickey Button" and it lies flush with my skin, which is nice.  It comes with all kinds of tubes and attachments  - the food is gravity fed, flowing from the top of a tall IV pole next to my bed directly into my belly.  

I try to sit with Steve and the kids as much as I can while they eat their dinner; sometimes it's the only way I get caught up on the kids' busy days.  But sometimes the smell of food is too much, and I just need to curl up and sleep until dinner is over.

The world swirls around me, moving at its usual hectic pace, and I feel frozen in place, taking it all in, from a mental space that is very far removed from everyone else's reality.

Cancer has reduced me, as a corporeal being, down to four bare essentials:  eating, sleeping, medicine and pain.  My body is weary, and the most basic task can reduce me to tears of pain or frustration in an instant. My body is not enjoying this cancer experience one bit.

But getting cancer is the best gift my spirit has ever received.   I don't know if I can adequately describe how it feels like the scales have fallen from my eyes, how I see everything so much more clearly now.  I see what a miracle my kids are, how lucky I am to have them in my life.  I see how profoundly blessed we are - with each other, with friendships, with a comfy house on a pretty tree lined street.

I don't want for anything. Everything in my life is perfect just the way it is, even with the cancer, because the cancer is the instrument that shows me - like a treasure map - how valuable every single moment truly is.

I know how hokey that sounds; how Hallmark Card-y.  But it's absolutely true:  cancer has enabled me to treasure my life, my family in a way I'm not sure I could have without it.  Cancer brought me right up to the this-could-be-taken-from-you-edge, and instead of fear, what I found was gratitude and grace.

God willing I will come out on the other side of this cancer-free some day.  But I will come out a changed person.  I will be more joyful, more patient, more loving.  I won't be too busy - ever again - to notice how lucky I am.  How lucky we are.

Cancer is taking a profound physical toll on my body, which I expected... dreaded, even.   What I did not expect was this feeling of completeness, of understanding that I have all that I need, right here, right now, and that I always did.