That’s it. Enough with this cancer stuff.

February 17, 2011

I got sucked in.

and without realizing it, I got stuck in the identity of “cancer patient”. Not astrophysicist. Not change agent. Not super(busy) mom. Not friend, or equal partnered-spouse.

It was an accident. And it was a mistake.

It was a mistake that (along with sky-high blood pressure and racing heartbeat from my trial medication) landed me in the hospital two weeks ago, and that has caused me no end of terrible thoughts as I suffered as my body got used to new heavy-duty trial medication and what turned out to be a kidney infection (or infected kidney stone?) on top of that. I was in bed for almost a week this time, on top of similar trouble just two weeks ago, and it’s not a good place for my head to be. And when even doctors shake their heads sadly at your patient history, it just reinforces that, and I’ve seen a few lately.

I thought, I honestly thought, that I was dying.

But I’m not. Well, no more so than we all are, said my oncologist just now, and I needed to hear that. I needed to hear that a lot.

Yes, I have Stage IV cancer. Yes, again, the fourth cancer in less than four years. Yes, it sucks. Yes, my next PET scan is scheduled for April, and we may see bad things. But we may see GOOD things. There is real hope that this will work, and I have to cling to that in more than a pretty little poetic way.

But more than that, I need to forget about it sometimes too. I need to spend more mornings doing things like making homemade frosting with my kids, and volunteering at their school. I need to throw myself into the work I love, and remember why I love science. I need to be my husband’s dinner partner again, instead of the woman he has to bring things to because she’s too weak to get out of the damn bed.

And to do that, I need to leave this cancer identity here, at the hospital, today.

And I need your help. In my toddler planet email box are nearly 700 emails. Some are brimming with excitement, full of ideas for projects that people want me to help them with, to be the face of cancer patients, to advocate, to raise money, and I need to say no. Some are ideas that I started, like blogging my clinical trial experience for ACS or the lymphedema sleeve connection that I made and asked you to help me publicize, but that then got out of control. Some are people wanting to do things for me, to send me things, to take my picture, to tell me about Cleaning for a Reason that will clean my house, to help. To help. Some people just want to visit the sick, and we are told explicitly to do that in the Bible and in faith traditions, and it’s lovely and wonderful and generous and

I can’t take it.

I don’t know how to say no to kindness, but I need to learn.

Because I need to get out of bed, push myself a little more each day, and find those other parts of ME again, to make this life that I’m fighting so hard for really be worth it again.

I’m taking extraordinary measures to live.

It needs to be MY life again. Not that of a cancer patient, living with either a fear or an expectation of death.

To sum up (and I’m sorry to ramble), I asked my oncologist today to tell me, straight out, whether I was dying or not. She said not now, and that there are more chemotherapy drugs to try if the trial drugs don’t work. We need to try this. She wouldn’t do this if she felt it was time. And there is hope of getting better.

After all that, I had still had trouble understanding her words, given how I feel, so I asked her, in mom-terms: So, should I sign the kids up for swimming lessons or call hospice? She looked me straight in the eyes, put her hand on mine, and said

Swimming lessons. No question.

But first, friends, I have some work to do in that email box. I’ve had trouble finding the words, but I think I have them now: “No, thank you.”

If you get that email this week? I love you. I love that you were so thoughtful. I love that you care about me. But I can’t act like a patient anymore, unless I want to keep being one. And I don’t. I want to take my kids to swimming lessons!

Edited to add: My labs just came back. Neutropenic. (My white blood cell count is too low.). No treatment this week. No crowds. Lots and lots of washing of hands for me and everyone around me. Did this cause the weakness that made me so afraid that my body was shutting down? I dunno, but it surely didn’t help.

Happy. Nice. Curious.

February 9, 2011

I worry about my kids.  I worry a LOT about my kids.  How are they making it through this crazy time?  How do they deal with hearing my name listed among the sick that we pray for at church every Sunday?  How do they feel when they hear me say, “No, honey, Mama can’t” wrestle or swordfight or take them for a walk? 

Are they ok?

Are they going to be ok when they’re teenagers, or all grown up?  Will this time be a defining moment for them, something to point to in future therapy sessions?  Will they be ok?

But yesterday, my oldest brought home a drawing from school that made my heart sing.  They drew pictures of snow globes, and, out of anything in the world, he chose to draw himself playing with two friends.  He drew friends.

He didn’t draw the dark scary place that I was in.  He drew the happy, kid place that he was in.

And he’s going to be ok.

Today, he came home with simple homework:  write three words that describe who you are.  We waited to hear what words he’d choose, and, after his bath tonight, he told us:

Happy.  Nice.  and then he asked his Dad what word he’d use to describe him, curious what he would say.  Dad said, “curious.”  Widget smiled, and there the words were, all out in the open.  WhyMommy’s oldest boy had fulfilled her deepest hopes, all at the age of 6.  He is happy.  He is nice to others and his friends.  And he does ask “Why, Mommy?” just like I dreamed, well before he could talk.  They’re still the sweetest words, next to the last ones I hear every night, as I turn off his light and kiss his forehead as he goes to sleep:

“I love you too, Mommy.”

No Princess Fights Alone

January 26, 2011

The next morning, I turned on the computer and could hear you all cheering me on from the comments.

As I scrolled down, I could hear you, and you weren’t sad any more. You were cheering me on, and my little Lego warrior princess, and loving my sons’ insight and innocence.

No Princess Fights AloneAnd then, I clicked through, and I saw the little warrior princess looking out at me confidently from Amie’s blog. Leticia’s. Amy’s, and Jean’s, and C.Mom’s and Abby’s. Marty’s and Laurie’s and Robin’s and Stephanie’s. Kate’s. Amy’s. Mel’s, and the LFCA community. Jenny, fellow IBC survivor in New Zealand. Sue, Margaret, Sunday. Ella, Kathryn, Anne, Jennifer, Heather, Stacey, Jennifer, Annie. Bon. Heather, Joa, Aimee. Cyndi, Rebekah, and Gayle. Michelle, Nicole, Stephanie, and Ilnap and the list is growing still —

I am blessed. beyond blessed, in every dimension of my life. I have a loving family, a strong and supportive husband, the work of my dreams, and the most amazing friends, who won’t let me wallow alone. They aren’t writing me off. and so neither will I.

As I stared, unbelieving, at the screen on Saturday, my little boys came in and climbed onto my lap for a snuggle. Widget looked up and was surprised to see his little warrior princess looking back. He asked, “Why is the Lego girl on the computer, Mommy?” and I told him what you all were doing. Both boys got happier and happier as we clicked through to post after post, blog after blog, and the warrior princess stood strong on page after page.

As they laughed in delight, I couldn’t help but join in, and we giggled and laughed and we turned off the computer to go read stories together, as it was nearly time for bed.

We all slept well that night, knowing that we do not fight alone, but with an army of princesses – Lego and real-life – and their actions go beyond the badge.

For each badge posted, Amie/MammaLoves will donate $1 to Crickett’s Answer to help women in need afford lymphedema sleeves and gloves to keep their arms and hands from swelling after a mastectomy (or two). Leticia/Techsavvymama will donate $1/comment on her post. Joanne/Pumditmom will donate $1/comment on her post. Go, comment, and spread the word – there is help available for breast cancer survivors needing lymphedema sleeves… and let me know if you’ve done something to help pass along that information (just use the words “lymphedema sleeves” and include a link to Crickett’s Answer). There are boxes of class 1 sleeves already at Crickett’s Answer that need to find their way to survivors in need. Class 2 sleeves will be bought as needed.

And if you just want to feel good about humanity? Go over to Amie’s post and see the growing army of princesses.

Together we fight, as the drugs I take each morning fight and starve and cut off the cancer cells so that they can’t grow any more.

“Me happy.”

January 16, 2011

… and then, on the morning of his fourth birthday, before any of the presents, the cake, the party, and the friends, my littlest looked up at me in a quiet moment, gave me a snuggly hug, and said, “Me happy.”

And suddenly, all of it — the chemo, the pain, the lonliness, the aches, the despair, the struggling, the treatment, the side effects, all of it — was worth it.  Because my children, my very dear and sweet and kind but most of all MY children, the only ones I’m really responsible for when it comes right down to it, are happy.

They aren’t scarred.  They aren’t afraid.  When we spent some time playing in the hotel pool on Friday after my work concluded, they laughed and giggled and bounced up and down in the water in my arms or with the kickboard as we learned to swim (having missed those lessons I looked forward to taking them to so long ago, when I was first ill), and they we had so much fun together.  When they saw the kinesio tape holding my shoulder in place, they simply asked, 6 yo Widget asked, “Mama, is that tape from chemotherapy?” and I swooped him into my arms and said, “Nope, that tape is just to help my bones feel better.  It doesn’t hurt.  And Mama’s on a break from chemotherapy. Do you know why?”  He said, very earnestly, “Because you’re working this week?” And I was so glad he asked it out loud, because I could say again, “Nope, because Mama’s got a new medicine to take that will work even better and not make me so tired this Spring.”  And he said, “Good,” and we paddled to the other end of the pool.

We try not to talk about it so much, to not make their childhood soundtrack hushed whispers and talk of chemo, but we do talk about it matter-of-factly, like others would talk about things that are normal and everyday in their lives, and I think that’s how the kids are responding.  That it’s normal. And everyday.  And not to be feared, but to be dealt with. 

That’s our approach to resiliancy, and I hope it works.  It seems to be.

We just got back from church, where I hope and pray my kids will find solace and not anger when the day eventually comes that they’ll be there alone.  I want them so badly to understand how much the body of believers strengthens me, and how beautiful I find faith.  How much I love singing the old hymns, next to people I don’t even know sometimes, but who unite with me in our belief that there is a God, and that he hears us, and that he gives us peace.

Widget and I were admiring the stained glass windows quietly at one point (let’s pretend it was before Mass), and we agreed that they are beautiful.  Then I asked him in a whisper, “What is the most beautiful thing in this church?”  I heard an answer I did not expect from a six year old boy, but had planned to teach him as he grows.  He said, unprompted, taking his hand from his hair where he’d been twisting it, “The people.”

As it turns out, he already knows.  He knows that there is good in the world, and that beauty is found in the community of people who gather to praise, to lift up, and to help each other.  Whether that community is the stay-at-home Moms Club that we poured our hearts and lives into when the boys were babies, the Jewish community that we gathered together with for nursery school, the Catholic community that we have now joined and put our energies toward, the blogging community that you know I love and treasure and my family knows helps me as only words can say, the Blogalicious community that moved me almost to tears Friday night as we screened the new Blogalicious movie and cheered women speaking on screen or afterwards, our neighborhoods … community is community, whereever you find it, and, at the end of the day, the most beautiful thing is always the people.

Thank you for being my people, and for supporting me and each other as we go through difficult — and joyous — times.