Revised Remarks

January 29, 2009

The minute you are diagnosed with cancer, everything changes.  One day, you’re just like everybody else…. and the next minute, you’re a cancer patient.

Decisions must be made quickly.  Will you have surgery?  If it’s breast cancer, what kind will you choose, a lumpectomy or full mastectomy?  Will you have reconstruction?  Or not?   You’ll have to work out the details quickly if you’re lucky enough to have the choice.

But maybe you can’t have surgery right away.  You wait.  You hope.  You pray.  You clear your schedule and become a regular at the oncologist’s office.  At the lab.  At the chemo ward.

Life changes in that instant when you hear “you have cancer.”

But you pull it together. You go to chemo.  You laugh, you joke, you ask the nurses which chair is the best spot.  The best spot for having deadly chemicals pumped into you, toxins that kill cancer cells only because they kill everything, every kind of cell.  Cancer cells — and hair — grow just a little faster than skin cells, and muscle, and bone.  The chemo will kill the cancer, but it will try to kill you too.

I remember.  First, I lost my hair.  Then my energy.  My strength. Then the use of my legs.  On the day I couldn’t walk anymore and was wheeled into the oncology unit, my doctor refused to give me chemo at all.  It was too much for me.  So, the next week, we started a new protocol, using a lighter dose every week instead of a blast of chemo every three.  I was afraid that it wouldn’t work.  But it seemed to, knocking me out as it had before.  It wasn’t quite as powerful, but it was every. single. Thursday.  I lost my good days between treatments.  I had maybe one day, Wednesday, when I could leave the house and my husband could drive me and the children to playdate, helping me slowly inside.  We couldn’t go anywhere else anyway, as my immune system was shot.

We pulled my oldest boy, 2 1/2, out of school, and began to raise our two boys in much more isolation than before.  Playdates were carefully screened,;no one came over if they had so much as a runny nose, because a cold could send me back to the Emergency Room, and I spent enough time there already.  We couldn’t go to the park anymore, or indoor playgrounds, or even the library because of germs.  Library books are loaded with germs.  It was not the way I wanted to parent my 2 year old and my baby, who was just 5 months old when I was diagnosed.

But, you do these things, and you make it through.  And, one day, after long months of chemo and drugs and pain meds and cancer, the day comes for surgery.  Single, double, lumpectomy, mastectomy, you pay your money and you take your choice, and the cancer is — hopefully — gone.

You work to recover from surgery just so that you can be hit again with radiation — or chemo — or both.  Radiation and I were not friends.  Just think — every day, starting your day with an appointment to take off your shirt, show your scars, and voluntarily scorch your skin.  A procedure so harmful that everyone else must leave the room.  Day after day afer day.

That’s what it’s like to have advanced cancer.  From day one, the stakes are high, and so are the challenges.  Even after treatment, your body is not fully your own, not even the same body anymore, with complications like lymphedema, additional surgeries for ovary removal or reconstruction, or perhaps chronic pain.

One of the hardest parts of all this is the feeling that you are alone.

I felt alone.  I felt like I was the only one in the world that this had ever happened to.  Or at least the youngest.  The mom-est.  Something.  It wasn’t part of the plan, you see.

But it’s not part of the plan for anyone.  Not the grandmothers, not the moms, not the athletes or the 10 year old boys, and certainly not the babies.

Cancer is devastating.  You know that.  That’s why you’re here tonight, looking for a way to help.

There two things that we can do, together.  We can raise money for research to detect, treat, and eventually prevent, this horrible disease, cancer.  And we can keep cancer patients company, and comforted, through their fight.  Clearly, by being here, you show you know the importance of raising money and raising awareness.  The second part may be a challenge for you.  I ‘d like to share a few examples of just how important reaching out can be, when someone is very sick.

You see, I was lucky.  Lucky is a funny word to use, but I was lucky that when I was diagnosed with cancer, I had friends, and strangers, who rallied to my side.

My MOMS Club playgroup, a group of moms who were brought together by the fact that we had kids about the same age and we lived in about the same neighborhood, came together for me in a big way, providing support when I was ill.  Every Monday, someone would call me, offering to bring dinner, to stop at the store, to help me in whatever way might be useful.  They’d offer to stop at the grocery for me, Trader Joe’s, whatever, and pick something up for me while they were out.  Because I still needed to go shopping, and the kids still needed treats, even though mama was sick.

Just before I went to chemo, I was scheduled to host a party for the families, to celebrate July 4th with a barbecue, flags, and backyard games.  I wondered about whether to go through with it, but decided to anyway, as one last hurrah before treatment.  I wondered if anyone would come, or if it would be too difficult for them to look me in the eye.  Everybody came, bringing cupcakes and salads and treats of all kinds, and one mom friend of mine brought t-shirts.  She’d made everyone pink t-shirts that said “Team WhyMommy” on them, and we all put them on and took a picture.  I carry that with me today, because these are the friends that stayed with me during treatment.

They did more than stay with me.  They celebrated with me, as every chemo treatment made me sicker but also killed the cancer, cell by cell.  Every third Thursday, as I dragged myself out the door to chemo, saying an agonizing goodbye to my little boys and holding my husband’s hand, I would find a big pink bag on my doorstep full of notes, goodies and yummies to keep my weight up, and little treats for the kids: coloring books and matchbox cars and someone’s outgrown toy bus.  Even the bag was a love note, covered with happy, inspiring words.  It was a little something to look forward to on those days I dreaded.

You see, when you go to chemo you feel good; when you come back from chemo you don’t.

When I went to weekly chemo, I didn’t want to be a burden, so encouraged them to stop … but they didn’t stop.  They stepped it up.

So my friends were a great source of support.

But what if you don’t have local friends like these?  What if you’re new in town, or your friends aren’t available when you need the middle of the night?  I don’t know what everyone else does, but I went online.  I was a blogger, you see, a casual blogger, who had been writing for a few months at the time about raising a toddler in the DC area, and I had this outlet.  I had a choice to make.  Ignore the cancer, keep my privacy, and pretend nothing had ever happened?  Or talk about the cancer, really talk, and try to record what was happening to me as I went through treatment?

I chose to talk about the cancer.

Since I was spending a lot of time in bed, exhausted, I decided that I would write something every day, every single day, and share the experience of being diagnosed and treated for cancer, as it happened.  I wrote about going to the doctor.  I wrote about the diagnosis.  I wrote about the prognosis.  I wrote about telling my friends, my family.  I wrote about what it was like to tell my little kids that Mama was sick.  I wrote about what it was really like to go to chemo, to sit in the chair, to have my body pumped full of toxic chemicals, and to get cold, so cold, from the icy mixture being pumped through my veins.  I wrote about my hair falling out, and pulling it out, and crying as it fell out on my pillow.  I wrote about the weakness and about the fears.  I asked for support, because I didn’t think anyone could go through this alone.  I wasn’t alone, I had so much support from family and friends, but I still felt alone sometimes.

No one can sit in the chemo chair with you during treatment.  No one can stay with you when you’re being radiated, or during surgery.  No one else can tell your children for you, or feel what it really feels like to tell your toddler that you’re just not strong enough to play with him today.  Or the baby that you can’t pick him up and cuddle.  It can be very lonely.

So I went online, during those hours when I felt good enough to sit up but not strong enough to stand alone, and wrote about the experience.  And, far from people leaving my blog in droves, they actually came to read it in droves, by the dozens, by the hundreds, and on the night before my surgery, they left me over 300 comments wishing me well.

If I was down in the night, or stiff, or lonely, I was able to log on or twitter, and, soon, someone would comment or twitter or email me, saying, “Are you all right?  I’m here.”

And that’s all it really took.  It didn’t take anything profound.  It didn’t take knowing just what to say.  All it took was for someone to say, “I’m here,” and it was easier for me to go on.

After a while, I started getting these notes from readers and friends thanking me for shining a light on this thing called cancer, telling the story of cancer from the inside out, showing what it was really like, the hard parts and the struggles, but the little joys as well.  People told me of their losses, their mother, their grandmother, their friend, who had died of cancer, and they didn’t know what to do, and they didn’t know how to help the people closest to them, and they lost them. But through my blog, they could begin to understand what had happened, and reach out, and grieve, and rejoice in the little victories.

And there was rejoicing.  Because my chemo worked.  My surgery worked.  My radiation worked.  And today, I am cancer-free. [this line brought much applause]

But the fight against cancer does not end with the good news.  It doesn’t magically change everything, “poof,” like it never happened.   Being a survivor does not mean that everything goes back the way it was [vigorous head nodding from a mom in the audience, which encouraged me to go on].  There is still a struggle, emotionally and physically, to recover.  There is But it does mean that I have the opportunity to go on.  That’s what I talk about now on my blog.  That I have the opportunity.  Even though it’s been a hard year, and there are some parts of me that still don’t work very well, it’s okay, because I was given a chance.

Maybe I don’t have as long to live as you do, and I don’t, survival statistics will tell you that, but I have today.  I have the opportunity to make today count.  I have the opportunity to hug my baby boys today.  To make memories today, and to write stories so that they know what happened, and how very much I love them, no matter what.

You have the opportunity to make today count too.

You’re here because you want to make a difference.  You want to walk to raise money to fight cancer, to make that difference, to let cancer patients know that they are not alone.

Part of the funds that you — Reston Relay for Life — raise every year goes to support the American Cancer Society Cancer Survivors Network.  This is an online space where any cancer survivor can log on, write, blog, and talk to other survivors.  I didn’t know about this when I was diagnosed — I created my own space, and a space called Mothers With Cancer.org where other young mothers could come and talk about the experience — but the Cancer Survivors Network is out there now, and what a great place for cancer survivors to come support each other.

Knowing that there are people out there rooting for you, supporting you, walking for you is an incredibly empowering thing.  It makes you fight harder.  As you guys prepare to walk this year, I encourage you to talk about it as well.  Raise awareness.  Raise spirits.  Do you know someone with cancer?  Have you told them that you’re going to walk?  Did you invite them to come and sit with you, and watch the action before or after your leg of the relay? Maybe you could even borrow or rent a wheelchair so that they can go around and take a lap with you.  Or someone who is recovering can train with you.  Breast cancer survivors who are hormone-positive, for instance, are often in training shortly after their recovery, strengthening their bodies and trying to return to normal, to get rid of “chemo fat” that stores the estrogen that feeds their cancer.

You have the opportunity to help people with cancer, in a real, tangible way, both with the money that you raise, the words you say, and the action you take.

I challenge you to make today count.

This was a talk I gave last night at the American Cancer Society Relay for Life Kickoff in Reston, VA (revised from previous version)…


Lullabies

May 2, 2007

“Mom, help!  Boom, Boom!  Thunderstorms!”

Thus I awakened this morning at 2 a.m., barely 20 minutes after soothing Little Bear back to sleep after his midnight awakening, changing, and feeding.  Widget had crawled into my bed, and he was clutching my arm and sobbing.  As I reached out to hold him, to comfort him, and to stroke his hair, I was reminded what a precious gift these children are.  They come into the world so very small (6 pounds, 8 ounces!), and then, through the sheer nourishment that we provide their bodies(hello, breastmilk! (goodbye, br**sts)) and their minds, they grow.  They grow into crawlers, walkers, toddlers, and beyond.  They grow into sentinent little beings that ask questions and put things together and say the cutest things.   They flourish.

They grow into little boys like Widget, who asked me this morning why a picture of a boy was on the back of the box of cereal we were nibbling.  He was a spelling bee champion, so I reminded Widget how letters make words and words make stories, and this boy is very good at putting letters together to make words.  I said that the little boy is very smart.  So they put him on the cereal box.  Widget thought for a minute, said, “Mom on box!” and snuggled into my arms for a good cuddle.  I thought my heart would break, it swelled so full of love for him!

Finally, all the work and practice and concern over his talking (or not talking) has paid off, as he has become a little boy who can not only repeat words, but make up stories, put together facts, and draw conclusions (or make up new stories).  What an incredible moment.

We were well on our way to a good (if crabby — Widget is always crabby and clingy when it rains; the weather affects him so) morning when I got a call that I’d been dreading.  My neighbor died. It was expected, as he’d been diagnosed with cancer last Fall, but I just can’t wrap my arms around it.  I’ve written before about how tragic I feel it is, even though he isn’t young, and he’s lived the life that he chose, but it just feels so … final … now.  I just sat there, in stunned silence, after his son told me the news.  I offered to help in any way, to comfort his wife widow as we could, but it all just felt so … empty.

So I hugged my boys and put the baby down for his morning nap.  And Widget?  He was still crabby from the rain and I was fragile from the news, so I thought about how to encourage some quiet time and maybe even some relaxation.  I popped in the new Andre Rieu DVD that we bought after we found that Widget loved watching musicians play classical music, and he was, once again, transfixed.  As the Aviator’s March resounded and then the Brazilian singer poured forth with the Song of Vilja, Widget relaxed, the baby closed his eyes, and they both fell softly asleep. 

That’s right.  They both napped at the same time. 

After a dark and stormy night of thunderstorms, crying babies, and terrible news, there was peace once again in our house.

This post was submitted to the Carnival of Family Life #52.  Stop by to read many other great posts, and consider participating in their special Mother’s Day edition next week!


The Evolution of Storytelling

April 15, 2007

I am endlessly fascinated by these little creatures we call toddlers.  No longer babies, but not yet schoolchildren, they are funny little people, full of life and energy and unbridled impulse.  Every day with them is new and every moment holds the possibility of new discoveries.

I talk about my children on my blog because they are the children who I know best.  (And their parents won’t call me out for slander or stop inviting us to playdates.)  Today I want to share what I’ve noticed in my toddler recently.  He is 2.5, and he has just over the past month or so begun to tell stories. 

It started off very simply, with a game that I helped make up in the basement.  We would crawl into his play tent and I would make a loud growly noise and we would pretend that there was a bear nearby.  Why a bear, I don’t remember, but it must have had something to do with a book that we had been reading.  From that action+story arose a whole little play that Widget would reenact over and over for the next few weeks.  We would be sitting in the tent and he would say “Oh, no! A bear!” or just wink at me and say “grrrrrrrrrrowl!” prompting me to ask him about the noise.  Then we went through the same steps each time.  I would ask him what we should do, and he would inevitably say “hide!”  We would crouch on the floor of the tent and cover our eyes.  Then the bear would come back and we would either send the dog (real or toy) out to scare him away or offer him honey.  It was a good little game, and I delighted in playing it with my little Widget, finally old enough to make up stories!

The next one came a week or so later.  I had brought home an inexpensive farm set from Ikea that included mommy and baby horses, sheep, and cows, along with a barn-like structure made out of tenting.  Widget was sitting on the guest room bed playing with it when I realized that he had made up his second story, all about a “horse go in barn.”  Good stuff, and all on his own.

Story number three was another action scenario.  This one got more complex, but was all of his own making.  My contributions were limited to “Oh, no!  What should we do?”  This story centered on the actions of a firefighter and was probably prompted by Richard Scarry’s Busy Day books.  Out of nowhere (but usually in the basement/library, like before), Widget would make a loud, “Clang clang clang!” sound like an old fashioned firehouse alarm.  I’d say my line (Oh, no! What should we do?), and he would respond “Hat on.  Boots on.  Slide down pole.” while pretending to put a hat on, boots on (first the left, then the right), and then grab the closest vertical object (curtain rod, PVC pipe, boomwhacker, vertical basement support), prop it up, and pretend to slide down it.  Then he would run over to me, say “in fire truck!” and I would make fire truck noises as we drove to the fire.  Then he’d say, “stoooooooop!” putting his little hand out in front of him, jump “off” the fire truck, “grab hose” and take it over to where the pretend fire was.  The location was different every time, but it never took more than a couple seconds to put it out.  (That Mr. Frumble!)  Then he’d come back, “put hose away” and we’d drive back to the firestation.  Inevitably, however, the ol’ “clang clang clang” would sound halfway back, and we’d start all over again!

The weekend before Easter brought a more complicated scenario, this one musical, and entirely of his own invention and execution.  In the living/playroom, Widget would grab the pretend microphone on his brother’s exersaucer, announce loudly, “Here’s a song!”  Then he’d bend down and turn his musical workbench on to get a beat, climb onto the picnic table, and strum his guitar to the music.  Then of course the toys would stop playing music and he’d have to start again.  He entertained us this way for nearly an hour that day ….

Last week, this kinetic little boy of mine hopped onto the lower rung of his youth chair, hung off the side, and declared it his “trash truck!”  For the next 30 minutes, and a number of times after that, he’d hop off, ask me for trash, and I’d give him a scrap of paper or the page that I’d just finished in my magazine (sneaky, huh?).  He’d deposit it on the seat of his chair, ask me for more, or hop on the side while I made trash truck noises and he pretended to ride to the next house.  Then, “hop off!” and ask Mommy for more trash.  This was a simple yet fun game with really imaginative props.  The youth chair, let it be said, bears absolutely no resemblence to a trash truck.  But in his mind, it was perfect.  (We ended this game with a trip to “the dump,” the recycling bin outside, and it provided needed closure.)

Widget’s memory is also improving.  Inspired by a post over at Bub and Pie, I’ve been talking more to him about past and future events, and he’s remembering them for up to a week so far.  He still talks about going to the aquarium two weeks ago (“Clap clap!  Dolphin jump up!) and asks to “Go see friends.  Mom, Little Bear go class.  Go see friends!” like he did 10 days ago (thanks, Stimey!).  Last week’s episode with the lightening was neat enough, but tonight with the rain and the winds whipping by his window, he remembered (“Boom! Boom! one two three four five!”).  And tonight in the library, he hopped on and off my exercise bike, bringing me pretend bits of our favorite after-playdate lunch: “nuggets and tea.”  And I swear, it’s been AT LEAST two weeks since we’ve “stop! nuggets!” at McDonald’s….


Sunrise on a New Year

January 5, 2007

As the sun rises on a New Year, I am reminded of my myriad blessings and blessedly few challenges.  I am grateful for all the wonderful people in my life, and I want to pause and reflect on the difference that they’ve made to me.

I want to, but for some reason I can’t get over this 100th post hump.  For months, I’ve been posting every day (except when I’ve been in the E.R. or numb with pain!) with seemingly no problem, but this week, nada.  I started this post on Monday with the best of intentions (praise Daddy, Widget, Whybaby in utero, all the grandparents, playgroup friends, Canape, NY friend, blogging friends, and supportive commenters), and just haven’t been able to push past the treacle that comes out when I’m on pain medication or the bitterness that pours out when I’m not.

It’s been five days now since I’ve posted — the longest hiatus yet for me — and now I’m starting to get emails like those over at Motherhood Uncensored wondering if I’ve gone into labor and had that baby already.  Um, no.  No baby yet.  We did go back to my OB this week (and will be going every Thursday until Whybaby decides to grace us with his presence) and found out that we are NOT ready to have this baby yet.  Argh.  We won’t be inducing until the 39th week, if then, and we’re back to waiting.  Groaning and waiting and trying not to whine.  The body (oh, I wish I were brave enough to share a belly shot, but there is NO WAY I’m posting that on the internet) is groaning under the 37 weeks of baby weight testing my injured back.  I’m waiting for a reprieve from the 29 weeks of bedrest that I’ve endured (and Daddy is waiting for me to be able to bend and do my share of housework again, I’m sure!).  We’re all trying not to whine as the cold damp air keeps Widget inside for yet another day and we run out of things to keep us all in good spirits.

Widget had a great playdate yesterday with a 3.5 year old friend that we hadn’t seen since June.  This friend has never been a talker, but now he is positively verbal.  He talked all the way through our playdate, using complete sentences, expressing his feelings, asking questions (including WHY!), the whole nine yards.  He did start out shy, which is totally understandable, and I was so proud when Widget tried to engage him in play.  He showed his friend the foam tunnel that we love to crawl through, with no success, and then I suggested that the boys “fix” it and asked Widget to find two hammers and bring one over to his friend.  Widget did, offering the hammer, and putting it in his friend’s hand.  Well, he wasn’t interested, but it was a big step for Widget!  Later we went downstairs and played in the ball pit and everyone loosened up and had a grand old time.  Widget even took part in a made-up game where we passed the balls to each other and his friend sat on a stool and pitched them into the ball pit!  Widget thought that working cooperatively (passing the balls from his friend’s mom to his friend) was the neatest thing, and he clapped and cheered for successful shots!  We had a great late-afternoon playdate, and it was the perfect antidote to a lackadasical week.

Today I solo’ed on child care for parts of the morning and afternoon while Daddy had big meetings downtown.  No problems, but no real excitement either.  Resting is really getting old, but the alternative (getting up and doing light housework or play for 20-30 minutes each morning) always brings afternoon payback — not being able to move from the bed for hours at a time, even on medication.  Ouch.  I’m doing it, though, and working through it, for I will recover from this and be even stronger than I was before.  Maybe I’ll do a half-marathon like Miss Zoot.  Maybe I’ll just be able to walk my kids to the park.  Whatever the New Year holds, I want to go into it fighting.  And writing.  And loving my kids more than ever before.

And that’s my 100th post.  Let’s get on with it, shall we?