Thursday, May 1, 2008

the banquet of life

When it comes to my prognosis, I hear two main lines of thinking: On one hand, there are the hard, cold survival statistics that I see in medical articles every time I try to do research about my sarcoma. The words from the doctors, like "probably not curable" and "prognosis not good." On the other hand, there are the words I hear from the spiritual people in my life, like a priest I respect very much who said to me this weekend, "The longer I'm in this business, the less regard I have for words like 'poor prognosis.' I see too many things that the doctors don't see." And the woman I met last fall from Well Within who came over yesterday to do healing touch on me, who told me she hates numbers and forecasts of how long people have left, who told me of people who have beat the odds for no apparent reason.

I much prefer to dwell in the latter zone. Obviously. But how do I go on educating myself about my condition — which all the cancer literature encourages patients to do — and keep my hopes up at the same time? I've started to dread reading the medical articles. They depress me too much, and a big part of me wants to bury my head back in the sand. I know I can't do that, not completely. (Thank God for a doctor friend of mine who is smart and willing to read some of them for me.) And while I would love to place all my eggs in the "miracle" basket and have faith that I will be the woman who beats the odds, I know I can't live in denial of what might happen to me — I have to be prepared, to have my house in order, even as I have hope. How do I do that? Seriously — how do I find that balance?

My dad turned 70 a few weeks ago, and I was thinking about him on his birthday, reflecting on what turning 70 would be like. It was before I knew my cancer had come back, and I was still in my happy place, just enjoying our family and the newness of Ben. I imagined myself on my 70th birthday, sitting on the porch in a rocking chair with Steve, reflecting on the long life we'd had together. I imagined us talking about those years when the kids were young and I had the cancer scare. "Remember those crazy times?" we'd say.

Mary Treacy O'Keefe (the woman from Well Within) says visualization is a powerful tool for healing (making the subtle distinction between curing and healing), and that it helps to imagine a specific scene like that. She told me about a woman who said she wanted to dance at her grandchildren's weddings. Not her children's, but her grandchildren's. I love that idea, too. I love imagining myself at Daniel's and Ben's weddings, putting my arms around my grown sons as we dance and telling them how much I love them and how proud I am of them. (I am crying now as I write this.)

But honestly, am I going to get that gift of time? I hate that I can't embrace this idea freely. I saw an obituary in yesterday's Pioneer Press for a woman who died after a "courageous five-year battle with sarcoma." Five years, I thought. That's pretty good. I'd be relieved if I knew I had five years left. But wait a minute. Should I give up the rest of my life so easily? Shouldn't I aim higher than that? Shouldn't I hold out for my 70th birthday, for the weddings?

Something else comes to mind. It's on a page I tore out of Oprah's latest issue the week before I got my diagnosis. It's a short, powerful paragraph by the African-American studies professor at Princeton, Cornel West. I'm going to type it here because it moves me so much; it's an attitude worth striving for. He says:

The surgeon was rolling me into the operating room for a seven-hour procedure on an aggressive form of cancer that was in the last stage. He said, "I don't understand; how is your blood pressure normal?" I said, "I've made my peace." My response to the cancer was that I was full of gratitude that I had been invited to the banquet of life for 48 years and experienced an abundance of blessings, especially in the form of family and friends. It just turned out that I've been spared for a while.

17 comments:

Tiffany said...

Hi, Emilie

I have been reading your blog regularly since Andrea let all the Mothers and More ladies know about continuing our meals for you and your family. I am so sorry to hear of your diagnosis, and with Alex and Daniel so close in age, when you describe your uncertainties about the future with your family, I can feel that too (I hope that came across as empathatic - I really meant it to be). When you questioned how to balance your hopes with the medical prognoses, I think you already have made a good start. In your blogs over the past few weeks, you've written about the sarcoma and the research you have been doing, yet at the same time, you have posted pictures of Daniel and Benjamin and have talked about them. Despite pervasive presence of the sarcoma in your life and the impact it has had and all that you are now going through, your roles as mother and wife still shine through. I am sure that there is much more balancing to be done - you very likely know this much better than I d - but I just wanted to say that I think you have made a good start.

Alex & Jill said...

Emilie, You are such a blessing to people that you don't even know...I'm so glad that I was introduced to your blog. We should all learn to live today as though it's our last, cancer or no cancer and I believe you are doing just that. You're educating yourself about your diagnosis/treatment as well as making the most out of every moment with your husband and boys. I encourage you to keep the attitude that you're going to beat this. You have so many people praying that for you and I'm one of them! :) *HUGS*

Anonymous said...

Go for the grandchildren's wedding. Proudly watching them dance and you watch(ok kick up your heals too). My grandmother in law doesn't have cancer, but her health isn't great...but she has watched half of her grandchildren(she has 32 or something) get married, and met their children. Picture holding your great grandchildren. Be selfish...be satisfied with every day as a blessing, but be selfish and grab any extra days you can. Live in the moment, while also living for the future. Your great grandchildren can't wait to meet you :)

Anonymous said...

Hi Emilie,

Came by your blog and am keeping you in my prayers. Going on vacation tomorrow with a friend who is in remission from sarcoma. She was diagnosed in 2000 and none of the four grandchildren she now has were born. The oldest just turned six.

C in NYC

Ordinary Mom said...

Hi Emilie!
I have been reading your blog everyday since I was introduced to it. I am so glad I found it! You give me such a different perspective on things. The power of prayer is so amazing. They recently found a tumor on my dad's pituitary gland. It was not malignant but it was causing him horrible health problems. Because of other health reasons we were so fearful of them removing it surgically and of course had been praying for some other cure. He went to the brain surgeon yesterday and the tumor was gone! The doctor was just kind of baffled and said well there's nothing wrong with you now! I think a lot of doctors can't see past the science of it all. I will keep praying for you and your family! :)

Cathy said...

Hi Emilie. I became "acquainted" with you through your columns in the Catholic Spirit and just recently checked into your blog. I've read many past entries so as to catch up on your life outside what I've learned through your column. I cry with you as I read along and I also pray for you and your family daily. I offer encouragement through a friend of mine, Todd Andrews, who just recently marked his 4th year fighting cancer. Following is the first paragraph from his "my story" on his Caring Bridge page. I worked with Todd's wife, Karen, who has been the strength and warrior behind him.
-----------------
On April 13, 2004, at the age of 26, Todd was diagnosed with chondroblastic osteosarcoma (a rare bone cancer usually found in children) after seeking treatment for a sore left arm. Our life changed dramatically that day. Within a week, Todd started chemotherapy, which was administered through a Hickman catheter in his chest for 7-day cycles, 24-hours-a-day, every 3 weeks. Todd handled the tough treatments amazingly well, approaching every day with a sense of humor that was contagious to those around him. Even when his hair fell out and he felt sick, Todd maintained his positive attitude.
-------------------------
Todd has been waging a very valiant battle against his cancer, and from what I've read about you, from your writings, I know that you will fight just as hard. I'm going to alert Karen and Todd to your blog and know that they will pray for you as so many have for them.

Cathy Schmit

Piccinigirl said...

I think the questions you ask are valid, they are questions each of us would ask. Yet, I know that you, Emilie, will find that balance between hope and reality. You are an amazing person, a person of true faith, of true love.
I believe in many ways that all of us have time that is limited, that at any moment we can be taken away from the people we love or they can be taken away from us . So to live as if you don't have time to take it for granted is the thing we need to do, not just those of us with a diagnosis.

as always I am sending hugs and love to you today.

Ellen said...

Keep up the visualizing and the goal-setting because they will be yours in some form or another. Although spending a January birthday in rocking chairs on a porch in Minnesota might not make for the most comfortable 70th birthday :-)

Christina said...

Knowing that you are both a faith-filled person and a thorough researcher, I've been wondering how you are straddling those two lines of thoughts. I think that would be incredibly hard to do, but it sounds like you're already finding a great balance; I applaud you!

I agree: Go for the grandchildren's wedding!

Madwoman of Preserve Path said...

Emilie, you're teaching me so much every day. I, too, struggle with finding that balance between faith and hope, on one hand, and reality on the other. Sometimes one or another weighs heavier. But no matter how the scale is tipped, you know God is there. So keep those dancing shoes polished. One way or another, you'll dance.

Anonymous said...

Emilie,

So, have you seen the devestation a forest fire inflicts on the terrain it engulfs? And have you seen the beautiful new green sprigs of life in the trees/flowers/moss/plants that appear shortly thereafter? The physics of the fire, the heat of the flames, the seeds laying dormant for so long in the soil-- everything must come together at the right time to give those seeds the chance they were waiting for to germinate-- there's hope and science for you. It's all around us in the natural world. What may look ugly in statistics or whatever may yield beauty sooner than you think.

Perhaps it already is? You said you feel like you're falling in love with Steve all over again? Wow. Daniel says sweet things to you, like an angel. Ben is smiling. Wow, wow, wow. Your life is balancing and compensating as God intends for you. Beauty indeed.

--Laura S.

Anonymous said...

It's funnny, because when I had cancer, especially after the re-occurance, I would have given anything to know I'd live a long time.

But now, at age 38, more or less headed toward a socially reclusive, spinster-ish future, I hate my advancing age.

Ellen made a good point - sitting on a rocking chair in Minnesota weather in you 70th birthday sounds a bit uncomfortable. And as far as your grandchildren's weddings - what if Daniel and Ben didn't have kids? Then you wouldn't have the grandchildren issue.

- Susanne

LutherLiz said...

Emilie,
I have found that those who are aware that balance needs to be sought, even when difficult are often those people who manage to balance things best. You know the importance of both sides of this for preparation and hope and all that. Research and prayer and planning and hope can all work together for you and knowing you you will find the balance that works for you. And when you have a day that things seem clinical and impossible there will be something to bring you to the other side, and vice versa.

And so why not shoot for the grandkids wedding as well as for 5 years and tomorrow as well. That is how we should all live, hoping for the joys of the future but acknowledging those around us today as well.

Rebecca Feyder said...

Emilie,

Like birth, with life (and death), we need to let go of the things we can't control and embrace those we can. With childbirth, we cannot control our labor, but we can control how we respond to it. You may not be able to control the effects of this disease, but you can control how you respond to it. Embrace the positive. Embrace each moment. You may have two years, you may have forty. The fact is, you don't know, and you may not be able to control that. You CAN control how you live each day. Live like you will see your grandchildrens' weddings. Live like you won't see tomorrow. That's how we ALL should live, cancer diagnosis or not.

Balance between two? Well, isn't that the answer we all need? How do we reconcile that we can live to be a hundred but could still die today? You are in a situation where you are forced to face this reality head on. Most of us have the luxury of putting this to the back our minds, assuming we have many more years ahead of us. If you figure out how to balance life and death, please share it with us.

In the meantime, we'll be praying for your peace with whatever comes your way. We will pray for forty years and ten grandkids' weddings.

R

Anonymous said...

My father-in-law was given a year after he was diagnosed with a different form of cancer. He lived 14 more, to the point where his death was something of a surprise, because his illness had become more of a chronic condition. You have to prepare for the worst, but then go on living your life like it's just another task that must be taken care of. Doctors can give you their best estimates based on what history has taught them, but they still can't predict the future for YOU. You need to make your future, however long it is, what YOU want it to be, regardless of that disease that may be inside you.

Elena said...

Em,

Don't forget to visualize your immune system as tiny little knights on white chargers, brandishing their flashing silver swords and shouting battle cries to the heavens as they gallop through your circulatory system, chopping to bits the monstrous invading cancerous orc-cells. (And they all look like Ewan MacGregor.)

xoxo

Mary said...

Emilie,

I have been away traveling and am happy to come back and check in on you. One of the things that was discussed at the conference I attended was the many kinds of hope. I think the key is to realize how many types of hope you are capable of having.

The funny thing is, none of us really thinks about "the hope for a long happy life" until it is threatened. Then, suddenly, that hope can become our entire focus. Everyone encourages us to not "lose hope" in long-term goals, and often our friends and family members equate hope with a cure. It's easy for us to do too.

But that is just one hope in life. What about the hope to create a joyful day with your family, the hope to take a weekend trip together, the hope of falling in love again with your spouse (that is so neat). There is the hope of planting seeds in your children that will bear fruit years from now, the hope to grow through whatever experience you are having. There are so many hopes.

For each of us, there will come a time when some hopes are no longer possible. But there is always room for hopes, many hopes.

In this moment, which hopes can I hold on to, and which ones can I choose to let go of? These answers are constantly changing for all of us, and our ability to allow hopes to come and go is what keeps us...hopeful. :-)

If there comes a time when the possibility of death is really weighing on you, you can use that time to write letters to your loved-ones, or journal, or plan. You've probably experienced that these "down times" usually come and go, and doing some of these things might help you feel that you did something productive with the feelings. Then, hopefully you'll find yourself moving back into enjoying the moment and hoping for successful treatment again. You can move from one side to another on this - there is no set course.

I don't know if you have a counselor, but talking these things out with a counselor or social worker who has experience with cancer patients might help. Your hospital may be able to point you to someone. These are just some ideas - you will work it out! No one can tell you how to do this for yourself - go with what resonates in your heart.