Thursday, July 31, 2008

this is the easy part

Lately I've been reading a cancer blog written by NPR's Leroy Sievers, who has brain cancer. Steve heard him speaking on a radio program recently and told me about him. He's pretty far along. These days, he's writing about things like whether to get hospice care and how he sold his Jeep because he hasn't driven it for six months. The other day, he posted something his wife wrote: "So I guess we've been through the 'easy' part of this experience ... it's going to get hard from here on out."

And I realized: I'm still in the easy part. Sure, chemo sucks (really, really sucks). And I don't like that I have to get around with a cane and can't go for long walks anymore and am so much more tired than I used to be. But I'm still in the part of my life — the part of this journey — where I'm still fully focused on living. I can wash my own face. I can walk downstairs to do laundry. I can drive places on my own. I can host a party. I can lift my boys up in my arms. I can (sometimes) have sex with my husband. Sure, dying is a fear on the horizon, and sometimes the idea of it petrifies me. But the prospect of actually going through the dying process hasn't become a reality yet; the doctor hasn't told us to get our affairs in order or take a cruise. We're still working on keeping this thing at bay, and even within the crappy margins of success that exist for this sarcoma, there's still hope that maybe I'll get more time. So we haven't had to turn onto the hard road yet, the one where you know where it ends, and you have to actually face it.

Last week, Randy Pausch died, two years after finding out he had pancreatic cancer. You may have heard of him; I guess he got a lot of press for his book, "The Last Lecture," based on the talk he gave last fall at Carnegie Mellon University. I'd read it this spring and admired the way he dealt with his terminal diagnosis. He was honest about how hard it was to prepare his family for his death, yet he was also pragmatic. He did the things he needed to do to make sure his wife and kids would remember how much he loved them. He took them on trips. He made lots of videos and wrote them letters. He was real, and full of enthusiasm and positivity. And he died. He didn't just go through the motions of preparing to die and then get miraculously healed, as if his positive attitude and fighting spirit were going to cure him. Don't get me wrong: I'm terribly sad for his family, and if he'd somehow managed to live, I would have held him up as a reason for hope. But he did die, like many cancer patients do. He didn't escape the hard road.

I get kind of tired of hearing well-meaning people tell cancer patients that it's important to keep a positive attitude, as if that will turn the tide of the tumors or make chemo more effective. It's a tall order. No one can stay positive all the time — not me, for sure, and I know it's normal to go into that black hole from time to time. Sure, some people are naturally more optimistic than others, but I refuse to buy into the notion that it's the optimistic people who live and the negative people who die. Positive people die of cancer all the time ... witness Randy Pausch.

So anyway ... I'm keeping an eye on Leroy Sievers. He writes honestly and simply about what it's like to enter that hard part of the journey. I feel like I need to know what it's like because I may be going there sooner or later. For now, though, I'm very aware that I'm still in the easy part, no matter how hard things seem.

28 comments:

Anonymous said...

I am in awe of you

Meg said...

Brave Beautiful Heart.

Coach Megan Thomas said...

What a beautiful post.

-Megan

Monkeymama said...

You are still in my prayers, I'm sorry that you have such a burden to carry. I hope that your easy part stretches on for many, many years.

Not on Fire said...

I am not usually a prayer, but I am praying for you. Thank you for sharing.

Mary said...

I think I have learned from my friend that the easy part can stretch much longer than I imagined. He recently died of Ewing's sarcoma, and though he knew he would die for three months, he had been dealing with the cancer for years. He dealt with incremental losses during those years, and he took them one at a time. I think that the hard part was when the body really stopped cooperating, and that was for the last three months. But it was one loss at a time again. Isn't it interesting that all of the incremental losses lead up to death, so that many of us will have time to prepare, if we choose to do so?

Still, he did something that I have rarely seen. As long as there was hope for treatment, he took the losses and focused on the living part. Then in those last three months, he used all of his strength to focus on loving the people around him. He read the letters, wrote the letters, and was present up until the last day or so.

He went from thinking that he was going to get a life-saving trial into hospice. And though he expressed the difficulty of acceptance, he dove into loving and helping the people around him deal with his death. It seemed to work very well for him. If I think of my last days full of love and concern for others, instead of worrying constantly about myself, even they don't sound so horrible. I'm not sure if I have that much strength and grace, but I have a feeling that you do.

As for positive attitude, I will resort to what my friend said about that. Laughter or tears, it's all good because it shows that you're alive!

Anonymous said...

Emilie -
You don't know me - but you've been on my mind a lot lately, due to knowing you from your columns... due to some friends losing a 3 month old to a liver disease, and a couple of other friends battling cancer. I came across this statement of faith from Tony Snow, another journalist with cancer. Since you mentioned Randy being positive, I feel more "permission" in bringing up another who was positive while facing cancer, but still losing the battle. I hope you can remain positive ('cuz it can't hurt in healing, may God grant you hope and healing) but even more because of all the other benefits. Yet - you stated it very well, there are always going to be black hole days. I will keep you in prayer.

I tried to pick just a section of what he wrote - but it's thick with good words, so I'll post the whole thing. I understand if you decide to remove it due to length or whatever. I'll include the link because the author provides a couple more details:

Anonymous said...

I don’t know why I have cancer, and I don’t much care. It is what it is — a plain and indisputable fact. Yet even while staring into a mirror darkly, great and stunning truths begin to take shape. Our maladies define a central feature of our existence: We are fallen. We are imperfect. Our bodies give out.
But despite this — because of it — God offers the possibility of salvation and grace. We don’t know how the narrative of our lives will end, but we get to choose how to use the interval between now and the moment we meet our Creator face-to-face….
[R]emember that we were born not into death, but into life — and that the journey continues after we have finished our days on this earth. We accept this on faith, but that faith is nourished by a conviction that stirs even within many nonbelieving hearts — an intuition that the gift of life, once given, cannot be taken away. Those who have been stricken enjoy the special privilege of being able to fight with their might, main, and faith to live — fully, richly, exuberantly — no matter how their days may be numbered….
The moment you enter the Valley of the Shadow of Death, things change. You discover that Christianity is not something doughy, passive, pious, and soft. Faith may be the substance of things hoped for, the evidence of things not seen. But it also draws you into a world shorn of fearful caution. The life of belief teems with thrills, boldness, danger, shocks, reversals, triumphs, and epiphanies. Think of Paul, traipsing though the known world and contemplating trips to what must have seemed the antipodes (Spain), shaking the dust from his sandals, worrying not about the morrow, but only about the moment.
There’s nothing wilder than a life of humble virtue — for it is through selflessness and service that God wrings from our bodies and spirits the most we ever could give, the most we ever could offer, and the most we ever could do….
Through such trials [as a diagnosis of cancer], God bids us to choose: Do we believe, or do we not? Will we be bold enough to love, daring enough to serve, humble enough to submit, and strong enough to acknowledge our limitations? Can we surrender our concern in things that don’t matter so that we might devote our remaining days to things that do?…
What is man that Thou art mindful of him? We don’t know much, but we know this: No matter where we are, no matter what we do, no matter how bleak or frightening our prospects, each and every one of us, each and every day, lies in the same safe and impregnable place — in the hollow of God’s hand.
He declared numerous times, and ever more strongly as the disease conquered his body, that he put his trust in God, that surrender was the way to approach both death, and life:
It’s not just saying “God, it’s in your hands,” but understanding whatever may come afterwards is a matter of not trying to get God to do stuff for you, except maybe to mow down some of the barriers that separate you from God, because for all of us, our vanities get in the way.

http://www.catholicexchange.com/2008/07/14/113174/

Anonymous said...

Sorry for filling up your comments... I just noticed that Tony mentions that we lie in the hollow of God's hand, which ties in beautifully with a post I read of yours earlier tonight:

You:
March 20, 08
"I recently wrote a column about one of my favorite images of God — a comforting pair of hands, cupped together, in which I rest and feel completely cared for"

I hope it's not just coincidence, and perhaps you can feel God's touch from that column.

kristine said...

I completely agree with what Sarah said.
Emilie, you are something else. I am honored to 'know' you.

Christina said...

My mother has stage IV breast cancer and has for over two years and despite a positive attitude it does get hard. You have said so beautifuly what I have seen my mother go through. Thank you.

Rebecca said...

Can I tell you how amazed I am by your attitude and perspective? I know you say you are not optimistic. You aren't negative, either. You are realistic. You understand where you are. You understand where you could be - all the roads that this journey could bring. You are facing every fear and hope head on, and I think that is amazing. Look every fear and hope square in the eye. Then you can put them into perspective.

Thank you for sharing your fears and hopes, by the way. I think it helps us all as we try to support you.

Emilie said...

Anonymous, thanks for those words from Tony Snow. Definitely not a waste of comments!

Mary, I always take a lot from your comments, and this story of your friend is no exception.

And thanks for the encouragement, everyone.

Betseeee said...

How could anyone sentient remain positive every single day, even without cancer? No one can expect that of anyone, and to even hint at the idea that the lack of wholehearted positivity determines who lives and dies is cruel.

You are a beautiful, strong, and amazing person. I hope you will beat the odds and be with us for a long long time. And if you do not, there will be so many people (and your own words) to tell your beautiful little boys what an incredible woman their Mommy was.

Ellen said...

A "positive attitude" is SUCH a cliche. I completely understand that you would get tired of hearing about having a positive attitude, as if that or some other form of communication with your body is going to be the cure.

Anonymous said...

Emilie ... you are such an eloquent writer, and have such fantastic way to look at life - with and without cancer. I agree that noone can stay positive ALL the time - and I def. dont think that only the positive survive - what I do think is that, when people encourage you to
"stay positive" they are saying (in so many words) "try not to let this consume you whole, live life as much as you can and enjoy those around you and let them enjoy you" ... not sure if that makes sense but thats what I think ... God bless you and all 3 of your 'boys'!
-Heather H

Anonymous said...

You are simply amazing.

Mona W. said...

I watched a beautiful person, my mom, live with - and die from breast cancer. There were days where if I would have said the word "positive" around her, she probably would have used all her strength to smack me :-), but she kept going. I think sometimes we misconstrue "postive" with " living". My mom knew that the cancer would never go away, and she worked, laughed, cried and lived. She eventually had to retire on Feb. 1 , 2005 and she died on Feb 26, 2005 - 25 days later. She was a teacher, had been for over 20 years. She lived until she couldn't, and knew when it was time to go home to God. The idead is to Live. Live well, Live strong, Live.
Emilie, you are always in my thoughts and prayers - I first "met" you on TTC 6 months board on msn.com and have always found you to have strenght and heart. God Bless You and Your Family.

Barbara said...

Emilie, I've heard other cancer patients express the same frustration with the pressure to "think positive," as if it's some kind of magical cure. Actually, I wonder if thinking positive all the time might not do more harm than good anyway. Feelings aren't good or bad, they just are what they are, and pushing down sadness and anger only makes them come out in other ways. It's much healthier to just acknowledge and express whatever it is that we feel without judging ourselves.

And it's only natural that you would be having a lot of different feelings right now. You have a lot to grieve these days--the loss of your healthy self, your hair, your ability to go for long walks with your boys.

I'm not an expert on the subject, but from what I saw as a chaplain intern (I was assigned to the oncology unit at St. Joe's) and what I've heard from others and read, the dying process--even for cancer patients--is often surprisingly peaceful and even beautiful. As people become closer to death, they often enter into a kind of transition where they become closer and closer to God and it's as though they have one foot in heaven and one foot here on earth. I witnessed this with my mom, and it was the most awe-inspiring thing I've ever seen; from what the hospice folks told me, she wasn't that unusual.

I tell you this not because I think you're going to die anytime soon, but because death is something that you'll have to face eventually, whether you die from cancer or from something else. As will we all. Hang in there sweetie, and remember how many people love and are praying for you.

Anonymous said...

Emilie,

Been out of the loop for a bit (for good reasons), and I am really impressed by this post. It's beautifully written. Wow.

Anyhow, Barbara's comments about her mother getting closer to God-- I saw it, too, with my father, and he wasn't much of a believer. He had this smile for most of the day before he passed, and no one could account for it. At one point he asked us where the leaves were coming, blowing in from the west, and said how beautiful they were. He must have been picturing a little of heaven, because there were obviously no leaves in the hospital room. Leave it to God to create a reassuring image for him, a man who always thought nature was his church.

I've told you how peaceful and life-affirming and, well, in ways, enjoyable those last days were for Dad and for his family. I'm not scared now. I pray that we can all see those "leaves" in the end, whenever it comes.

-- Laura S.

Ahuva Batya said...

It's so ironic... that you can look at what you're going through and reconize it as "the easy part." If that doesn't speak to what kind of human being you are, I don't know what does.

Dan D said...

Just wanted to let you know I'm thinking of you, all of you. And praying for all of you.

LutherLiz said...

I don't think there is anything wrong with hoping that this will be the hard part, but hard or easy we will all be here with you supporting you.

Marketing Mama said...

Emilie, Sometimes, like today, I struggle with how to respond to your posts. I want to say something helpful and supportive, but not be trite or patronizing.

Your experience is your experience and I know you don't need any of us to validate that for you. But thanks for sharing it with us.

Missy

Roxy said...

I saw a card today that reminded me of you - had a ape on the front. No that part didn't remind me of you, you are much sexier than an ape! It said "sometimes you just want to throw poop" - maybe it's not poop you want to throw, but if it is, throw it as hard and far as you can.

You are an inspiration.

Anonymous said...

Em, I meant to post this earlier, but have been horrendiously busy. Anyway, this article pertains well to what you wrote about when people always say to have a "positive attitude."

http://www.webmd.com/cancer/news/20071022/positive-attitude-doesnt-whip-cancer

Anonymous said...

BTW the post directly above is from Susanne.

Piccinigirl said...

you are amazing Emilie, thank you for writing this and for sharing this very scary time with us with such honesty.
thinking of you.