Friday, April 27, 2012

The In-Between. And Before and After Pics.

Since hearing the news that I'm in remission, I feel like I'm living in some kind of in-between space.

I'm present, I'm doing all the same things I always did, but everything feels different.  I'm struggling to find the words to explain it.  

I have turned into an observer of the world, much more so than I ever was.  I exist here in my in-between space and I watch.  And I listen.

I watch the tired looking father snap at his two young girls to just hurry up already as they take their time, asking a million questions at once, getting out of the car at the post office.

I listen to the moms I don't know gossip about another women on the soccer side lines.  It's the worst kind of gossip - she's put on weight hasn't she, what was she thinking wearing that outfit.  She's not twenty anymore.  

I observe my all-too-grown-up nine year old, as she gets herself up in the morning, gets dressed, fixes her own breakfast, packs her own lunch, and calmly reminds me of several upcoming school events I need to  be ready for.

She has become so independent in the last six months.  She looks like a stranger to me in many ways; I can't believe she's mine.

I listen to a woman as she cries to me, spilling her heart out because she just cannot stop drinking, no matter what she has tried.  I tell her what worked for me, offer advice and a huge hug, but I still feel like I'm observing all of this from above, from a place of other.

I wonder if this is normal?  If other people who have had life threatening illnesses or injuries feel this way once they know they are out of the woods, at least for a while?

It's like nothing - and I mean nothing - can touch me, make me irritated or angry or short.  I'm just so grateful to be here.

I have noticed, though, that other emotions are very raw, very real, and they do not exist in the in-between space.  I have been missing my Dad a lot these days.  For those of you who are new to this blog, this is what happened last June.   I've been talking to my Dad a lot through the cancer.  Praying to him, missing him, asking for whatever help he can give me from above.  I want to wrap my arms around him so badly it hurts.  It physically hurts.

I look at my husband with new eyes.  I am so grateful I married a strong, loyal man like him.  You know so little when you pick your mate, you know?  I was all of 25 when I fell in love with him.  We are very different people.  We almost didn't make it, during my drinking, but then we did.  He has been a rock for me, a calming, level-headed and loving presence.  I know he was scared, we all were, but he just loved me, hugged me hard and gave me faith that we would make it through.

I think of my mother, dutifully showing up nearly everyday for radiation or chemo appointments, calmly knitting, asking the questions I was too shell-shocked to ask, folding my laundry, playing with my children.  It felt like every time I looked up, there she was.  How lucky am I?

I guess what all this means is that the trivial stuff has simply dropped away.  Every day feels like such a gift, and I hope I can hang on to that.  I went to the grocery store for the first time yesterday, just to pick up a few things, and I literally stood and blinked with wonder: I'm shopping, just like everyone else.  I'm on the other side of the bad stuff.  

Lastly, I tried to take a pic of me at the end of the journey.  I took this one at the very beginning, last fall:

And I took this one today:

(If you look closely you can see my bad-ass scar on the left side of my neck.)

I miss my hair.  It all fell out from my ears down in the back, because of the radiation, and really thinned everywhere else.  So I have to wear my hair in this silly little ponytail while I wait for it to grow out.  And grow it will.   I lost forty pounds since December, and am a weight I haven't been since junior high.  I will likely put a few pounds on as I can eat more foods, but I kind of like me at this weight.  I feel healthier and look better.

And MAN, am I happier.

I'm in the moment.  All the time.  And it feels really good.

Saturday, April 21, 2012

An Update and A Question For You

I'm sitting in my room, enjoying a book.  Sunbeams stream in through the window and warm my feet.

Outside I can hear the kids playing some elaborate make-believe game involving just about every stuffed animal we have in the house and the swing  set.  Their giggles ride the wind up through my window and they make me smile.

Listening to my kids' laughter makes my heart soar, when only a week ago in made me cringe with fear and desperate hope that I would be around to listen to them laugh for a long time.

Life is good.

It's hard to find words for how I have felt the past six days, since we got the news that I am in remission.

I feel as light as air on the inside.

I'm making plans for the summer with a sense of excited anticipation in my heart.

I know we did a good job concealing our stress and fear from the kids, because when we told them the good news, that the cancer was gone and I am in remission, they both smiled and said, simply, "Oh. Good!" before running off to do the next thing.

That's how it should be, for kids. They had faith in their heart this whole time that I would be okay, and they got that faith from us.  I'm proud of that.

My husband and I share secret smiles across the dinner table, and tender touches as we pass each other in the hallway.

Everything feels brand new.

Because of the weight loss, I went out and bought a tankini (is that what they are called?).  And it looks good.  I kept trying on smaller and smaller sizes and giggling like a lunatic in the dressing room.

I'm still mostly eating through the feeding tube, but trying valiantly to change that.   I discovered I can eat pancakes (YUM), as well as oatmeal, yogurt and blueberry muffins.   If I can keep adding to that list, the feeding tube should come out in a few weeks.   I still have a fair amount of pain in my mouth/throat, but it's slooooooowly getting better.  And dealing with just the pain, and not the additional stress of wondering what's going to happen to me, is so much easier.

One last thing- shortly I'll announce a fun thing I'll be doing with Heather this summer.  As part of that, I'm curious where you live?  Even if you've never commented before, can you leave a comment with where you are?  Make up a pseudonym if you want to - no need to use your real name - but I'm really curious where you all are from.   Will you do that for me?   Explanation to follow in another post.

In the meantime, I'm just going to keep on floating.....

Sunday, April 15, 2012

On Second, And Third, Chances

Here we are again, I think.

My husband and I are sitting in the surgeon's office, staring nervously out the window.  We've been waiting for almost an hour, and the tension is unbearable.  Every now and then we shoot each other a smile meant to encourage, but it's a weak attempt.  We're both terrified.

We're waiting to hear the biopsy results from my surgery ten days ago, to find out if the cancer is gone, or not. We were told that we'd hear the results earlier in the week, but all week the phone didn't ring.  All I can think is that the surgeon put us off to give us bad news in person.

Finally, the door opens, and the surgeon steps inside and quietly shuts the door behind him.  His face is unreadable.

"Well, your pathology results are finally back," he says, neutrally.  Then his face breaks out into a huge smile and he says "there is no sign of active cancer.  It's the result we wanted. Congratulations."

My husband leaps up to shake his hand, and I quietly burst into tears.

Just like that, we're free.


On the drive home, I'm quiet, contemplative. I feel like an entirely different person, with my head uncrowded by fear.  Now I'm just a regular person driving home, instead of someone constantly thinking about her own mortality.

I think about second chances, and realize that I've been here before. When I got sober, when I finally wanted to be sober, I looked at life with the same fresh eyes. There was no such thing as an ordinary day in early sobriety; each day felt scrubbed new, every experience and interaction was tinged with a sense of wonder.  Here I am, doing this, and I don't want to drink, I would think to myself as I gave the kids a bath, or went to the grocery store. Everything ordinary was suddenly extraordinary.

I feel that way again.  So this is, in fact, my third chance. I woke up yesterday morning fixed breakfast for the kids, joked around, laughed.  I felt as light as air, free of the fear that has been tethered to my every thought for so long.


Just like with recovery, though, this is a lifelong thing I'm up against.  I will be an alcoholic for the rest of my life; the goal is to remain an alcoholic in recovery.  I will be a cancer patient for the rest of my life, too.  The follow-up is extensive for the first two years, every six weeks for the first year. Every three months for the second year, with imaging/scans done at least three times a year.  My surgeon told me I will see him at least once a year until he retires.

The goal is to stay a cancer patient in remission.

I am still in a fair amount of pain, and I'm still tired a lot.  And now I have an impressive 6 or 7 inch scar that runs down the left side of my neck; a permanent mark of the ordeal we've been through for the past six months.

Second and third chances do not come without leaving scars.

I treasure my scar, because it's a reminder to do something with life.  To treat each day like a gift, cradle it in my hands and appreciate its beauty, but also its fragility.  The ordinary truly is extraordinary, it just usually takes a cage rattling experience, like cancer, to really see it, to really feel it.

Last night I started to get a little cranky.  I was tired, it was late, and we hadn't eaten.  The kids were whiny, and I didn't know what to do about dinner   It was such an unfamiliar feeling - cranky - that it took me a minute to identify it.  I have been so full of fear for so long there wasn't any room for a frivolous emotion like cranky.   I found myself laughing at the very idea of it.

I hope to hold onto this sense of wonder as much as I can. But, just like with sobriety, I know the sheen will dull, and it will take vigilance to remember how it feels when you are newly back from the brink.  The trick is to carry enough of the fear with me that I remain grateful, but not so much that I lose myself to it.  The tools I have learned in recovery will help me with this:  look back, but don't stare.

Thank you, all of you, so very much for all your prayers, good wishes, gifts, cards, texts, emails, letters -- everything you have done to carry me and my little family through the past six months.  I don't know how I came to be so blessed, and I am so very, very grateful.

Wednesday, April 11, 2012

How I Am Doing

For the first time, possibly ever, I am struggling to write, to care enough to type out a few words about how I'm doing. Or perhaps more accurately - how I'm not doing.

I'm recovering from the surgery just fine.  The doctor removed what was left of the lump and the surrounding lymph nodes.

I'm waiting to hear back about the results:  was it just "rubble"?  Was there active cancer contained in the rubble that was successfully removed? Or do I still have cancer?

I'm sorry to report that I'm not handling this waiting very well.   I've had it.  I'm tired, sore and my soul is weary.  I pray all the time but it feels like I'm going through the motions.  I sleep and read a lot, because when I'm awake or aware I'm so clenched with worry I can barely function.

I wasn't going to post until I had the results, but I've gotten so many "are you okay?" messages that I knew I had to at least check in.

So I'm okay, but I'm not.

I think I'm going to have to get used to living this way.

I don't know what happens if I still have cancer. My doctors, smartly, refused to talk to me about it in detail.  Getting my mind to stop awfulizing is next to impossible.  This is my trial, I guess, the thing that I must go through so I can learn how to live with more faith, with more hope.   Even if I make it through this one, there will be many, many more tests, many more waiting periods in my future.

I wish I had rosier words for all of you.  I wish I was handling it with poise and grace all the time, instead of retreating to my bed with my book and a fair amount of tears.   I'm finding that I really, really miss my Dad, too.   He had seven years of tests and waiting for results, and I could really use his strong arms around me, and his wise words to guide me.

But that's not the reality.

So I stretch and grow and cry and learn and breathe and try to keep it in the moment.