Ten

We walked in late, exhausted from the drive North in the dripping rain, driving towards the unknown with so many other cars hustling and hurrying on their way home from work.  We walked in late, blanket held tightly in my arms, into a room full of nine cancer patients and a spouse for each, nurses and session leaders.  They had saved a chair for each of us, but I hesitated as I looked at the bony metal things, for my hips were screaming in pain from the drive up.

I am bedridden most days now, the pain of the last three weeks crescendoing when I dare to sit at my computer or dawdle after dinner – 30 minutes is my limit in a chair, putting all my weight onto the cancer-enriched hips.  They don’t like it, and neither do I, and I hesitated before sitting in a chair that I knew would hurt.  I did it anyway, because really I’m a conformist. I follow rules and try to understand why and then make up games like “What would I do to make this better?” in my hotel room after meetings.

It lasted only a few minutes.  My hips hurt, and the pain screamed so loud I could not hear the speaker.  So I took my blanket and lay down behind the circle of survivors, shuddering with the pain and the embarrassment at not being even good enough to sit with the warriors in the circle.  My husband joined me, and stroked my forehead, and told me that it would be ok.  That it already was ok, and that he loved me.

And I was reminded in that instant – and in so many instants that weekend – that he did, and he does, no matter my disability now or my emotions toward that evil beast cancer that is trying to steal my life.

The Johns Hopkins nurses and organizers of the weekend retreat (A Journey of Courage and Hope for Couples) brought in a couch for me, and I thought I might die of embarrassment, but they were so kind that I accepted, and I lay my head in Curt’s lap and my feet cuddled up at the other end of the couch, and we spent the weekend together like that, or flipped vice versa, with my head on a pillow and my feet being gently rubbed as we worked through the sessions together.

I met some amazing people that weekend, like Leanna, a woman just younger than us, gifted with compassion and healing ways about her, she of the Labyrinth and the defiantly pink hair covering a scalp that has seen radiation, a shunt, and more than anyone should have to deal with.  She walked with grace and a walker, and her loving husband Herb bustled about her, eager to help in whatever way he could, knowing that he could not take her pain away.  They are a strong couple, and new friends, and I hope to see them again since they do not live too far away.

Rachel gifted us with laughter, irreverance, and a fighting spirit all weekend.  She introduced me to the young mets board for young metavivors, survivors with metastasis, and she bubbled all weekend long about plans for the young survivors group that she was forming in Louisiana, at a hospital where they only knew four that fit the bill.  She and her husband kept us in stitches, and we bonded quickly as we insisted that for pink ribbons to be helpful, they must be wrapped around research into a cure for this cancer.

The group was led by Lillie Shockney, R.N., an amazing force for cancer survival and resources.  She helped us see past our current states and see into a future where things could be different.  She helped us remember the past, and we did an exercise of memories, and I’ll share more about that project and other things that cancer survivors — and, frankly, all of us — can do to increase the odds that our children will remember us when we’re gone.

Heather and Tammy, Pat and Pam, Marie, May … oh, I wish I could sketch them all here, but I’m sticking to the ones who are already out there on the internet, for their own privacy, but I will say that we were blessed to meet people who were newly diagnosed and 14 year survivors, people with rich, tight marriages, people who could laugh with each other, and people with all states of hair regrowth that I swear no one noticed, except to admire a beautiful scarf or a particularly gorgeous shade of red on Saturday’s wig.  It was a time for us to be together, but it was different than all the other retreats and support groups that I had been to before.

This retreat recognized that we are not just individuals plucked from the population and stricken with disease.  We are partners, spouses, mothers, daughters, and our disease exists in a matrix of love and compassion — we hope — and our supporters need support too.  So as I thank the organizers of this retreat, again, Lillie Shockney, the Johns Hopkins Breast Center, and the funders, The Salisbury Foundation, headed by a single individual who wanted to make a difference and called Lillie one day, asking what she could fund that would matter.  This mattered.

I also want to thank all of you who have supported me in our fight against breast cancer.

Those who have made casseroles.  Those who dropped by with brownies.  Those who took my children for an afternoon or dropped by to sit with me in the morning.  Those who call once a month to check in, and those who make crazy fun that I can still join in.  You are all wonderful, and I thank you for being there for me, for not giving up on me, and for including me in life.  I am not giving up.  In fact, I am renewed and energized, and I am talking to my oncologist this morning about ways to reduce my pain and get me back into life and out of the bed.  I want to go see those soccer practices myself.  I want to volunteer for cub scouts.  I want …

I just want to live, and today I thank all of you who have helped encourage me to follow this dream.  There are two more posts about the retreat to come, one chock-full of ways to help you preserve your family memories, and one in which I will share with you the miracle that occurred Sunday morning, when I was at my worst point, and when the pain was almost too much to bear.

“It’s not fair!”

How many times have I said those words this year, or in 2007 with my diagnosis?  How many times do we all think those words as we haul yet another load of wet laundry out of the washer and into the dryer, or sit resignedly in the car for yet another commute to work, while we imagine that our next-door neighbor has it so much easier?

It really isn’t fair, is it?  He gets to send his laundry out to be done by strangers.  She has a nanny AND a lawn service.  They get to go away on vacation after vacation, and she had cancer, sure, but no recurrence.  There’s always someone who has it better than we do.

And yet, were any of us promised a perfect life?

Listen to this story:  Once there was a man who needed some work done on his land.  He went out early in the morning and hired laborers to work that day, for a fixed wage.  When he came back to town later in the morning, he saw more men standing around and hired them as well, saying he would pay them a fair wage.  At noon, he hired another group of men, and again three hours later.

At five o’clock, he ran into more men standing idle in the town, and he asked them, “Why have you been standing idle here all day?” “Because no one has hired us,” they said, so he sent them to join the other workers.  That evening, when the work was done, his foreman paid the workers, starting with the last to be hired.  They each received the daily wage that was promised to the first.  Each group was paid, in order from last to first, and they each received the same wage.

Those who were first hired grumbled, saying, “The men who came last have done only one hour, and you have treated them the same as us, though we have done a heavy day’s work in all the heat.”  The landowner replied, “My friend, I am not being unjust to you; did we not agree on one denarius? Take your earnings and go. I choose to pay the lastcomer as much as I pay you.  Have I no right to do what I like with my own? Why should you be envious because I am generous?”

This story comes from the Bible, from Matthew, Chapter 20, and Jesus ends the story by saying, “Thus the last will be first, and the first, last.”  It is a difficult reading, and one that I have always had trouble with.  I was raised by parents who believed in a strict work ethic, and when I complained, my father intoned the maxim “to whom much is given, much is required.”  We were lucky, they taught me, to have a house to live in, good food to eat, new clothes to wear, toys and books – so many, and so much, and so I must go forth into the world and give back more than I was given, to help others as I could.  I have lived by that maxim, and I am teaching my children by that maxim, and they come back with the same rejoinder: “It’s not fair!”

And we struggle.  But this parable, taught in church last week and again in my new prayer group (and thank God for them, because I feel already blessed by the experience and the people therein), teaches us something very interesting, and after a week of challenges, I think I finally understand it.

Life is given to each of us.  We each get one shot at this sucker, and we are never really told that it will be fair.  We each get one life, one daily wage, and that’s it.  The guy next door gets one life to live.  The mom down the street gets one too.  No one ever promised us the same life, the same opportunities, the same blessings, or the same time to live.  No one ever promised that.  We are promised one opportunity, one life, and how we live it is between us and our Creator (I believe).  There is no comparing.

And so when one of my little children comes to me after dinner and say, “But Mama, he had a fruit snack earlier today too! That’s not fair!” I am able to stand my ground and say, that’s right, it’s not fair between you two.  You haven’t gotten exactly the same today.  But you asked me for a fruit snack, and I gave it to you – did I not keep my word?  Didn’t you get what you were promised?  As they reluctantly agree, I remind them that that’s what we learned on Sunday, and that it doesn’t do any good to compare what one gets to his brother, because it may not be fair.  But I will keep my word to each of them, and they will have what they need, and treats besides.

Now I need to take the passage to heart, and to stop raging on days when I don’t leave the bed (like yesterday, because of pain and great fatigue), “It’s not fair!”  Because it’s not.  That’s true.  I can’t imagine a scenario where anyone would be happy to get cancer at 35, and think oh, yeah, well, that’s fair.  That’s ridiculous!  But I am coming to terms with it, and it’s easier when I stop comparing my life to others.  I wasn’t promised the same life as my neighbors.  I was promised a life.

As I sat and talked to Jessica this morning, I reminisced a bit – I was so lucky, to be able to go to college, to study, to move here to work for NASA, to then get my dream job – the job I was ready to work my whole life for – of overseeing the competitions for new space missions, and for being the scientist at NASA Headquarters responsible for a mission to outer space.  I had that job for five years, and I absolutely loved it. I couldn’t imagine what would come next.  I wanted children.  I was so lucky that I was able to have them, my beautiful, wonderful, smart, and kind little boys.  When I got ill, I begged and pleaded and prayed that I could get the oldest one settled in kindergarten, on his way to a life of loving school, and the littlest, then barely more than a newborn, in a preschool that he loved, with support from friends and teachers and the families of his friends were anything to happen to me then.  I couldn’t imagine that I could live that long, but I prayed and I tried and I kept fighting.  These dreams have come true.  The boys are settled into a wonderful school, where they are loved, and supported, and safe, part of the school family, and they spend their days as they should, learning and playing, and when they come home, we are lucky enough to spend time together, with milk and cookies, then doing homework and practice on their letters (Widget wrote 14 thank-you notes over the last two days!) before they have a little tv and I rest again for that hour before Daddy comes home for dinner and we are all together again.

I have everything I ever wanted.

Am I sometimes envious of others, who may get forty-plus more years on this Earth than I?  Sure.  But I was never promised 80 years. I was promised a life.  And boy, have I had a pretty incredible life.

I’m not done yet, but I am finally coming to understanding about the parable and about what I’ve been given, and I am again grateful, for God has kept his promises to me and I have lived the best way I know how.  I have been truly blessed.

Looking on the bright side

is exhausting.  Too exhausting.  As I’ve gone through the week, I can’t help feeling that my last post here was not altogether honest.  I have always been honest with this blog, as otherwise, I don’t see the point, and I tell what I can so that others can understand what it might be like for their friends who have cancer, but some days I don’t have the energy to put in that magical little twist where everything turns out ok, because I know how to cherish the moment, or because I realize that I now have days that I wouldn’t have if I weren’t so lucky and the medicines so good.  I want to be grateful for this day.  I do.  And, sooner or later, I realize that I always am grateful, and I try to capture those moments here along with the frustrating and tiring and sad parts, because life is always a mix, and life doesn’t end the day you hear the words, “You have cancer.”

But this last week has been pretty awful.  Several of the last weeks have, actually, and it’s pissing me off.

The pain is under control. I’m on good medication, and I almost always take it on schedule.  That helps, and I have the warm pool in the sunroom now to help soothe my aches and pains every night and when I get behind on the medicine or it just isn’t enough.  But the meds — a weekly chemo, a monthly infusion, two pain pills, one to help with menopause, and two to sleep at night — all put me to sleep, and I’m so very tired.  I can’t tell whether it’s from the meds or from the general weakness of, you know, fighting cancer, and so I can’t tell when it’s ok to take a 5 hour nap and when I should power through for another bit.   I know, I know, it’s always “ok” to nap — but it doesn’t really help me get anything done, ya know?

I’ll post again soon.  There have been joys — seeing the kids adjust to school so well, watching Widget play soccer and seeing him raise his arms jubilantly as he runs back down the field after scoring a goal, cuddling Little Bear when he asks, and listening to his great stories of the games he plays with “the spy kids” at junior kindergarten.  I joined a new prayer group today, and I am thankful for them already.  My parents-in-law are visiting this month, and I am so grateful for their company during the day.  They are such a big help with the wash, the errands, the house, and the children, as my parents are when they visit too.  My parents are doing well and having fun, traveling last week, and I’m happy for them.  My husband — oh, you know, he’s perfect in every way, especially as far as the internet is concerned!   So there are good times, and good moments, and when I read the children to sleep or greet them with milk and cookies when they come in the door from school, I am so grateful for life.

But in the hours between, the times when I must sleep the morning, the afternoon, or both away to restore my energy or reduce the pain, it’s hard.  I lie on the bed, reading or gaming or watching tv, and I feel absolutely rotten that I can’t do more.  That I can’t be of service more.  That I can’t drop by the school or lead cub scouts or run around with the kids at soccer.  And I lie there, and wait for my body to be restored so that I can get up again and do the little I can, and I feel rotten.

But I don’t write about those parts, because what can I say?  Cancer sucks?  Having cancer cells replace healthy cells in your spine, hips, ribs, and legs makes those parts hurt?  I’m tired of resting?  How ungrateful of me!  How rotten, when I am so lucky to be alive when so many of the friends I’ve met through Mothers With Cancer are not!

So I lie quietly, and wait “for my energy bar to fill up again,” as the boys say, in the language of video games, and I try not to be a bother as people hustle and bustle around me, doing my work, taking care of my children.

But still, it is exhausting.

White cell counts still low

… so I had to cancel on bookclub tonight.  Wah.

I’ve been really upset about it the last few hours, but ya know?  My friend Sarah would have given anything to spend an evening at home with her family.  So I did.

Hope you have as nice an evening as I did, and that you get hugs goodnight.

Susan