Wednesday, April 4, 2012

Prepping My Twins

My husband and I always said that we would talk frankly to our girls.  That, despite the fact that some think kids must be protected, we armored ourselves with the mindset that the more they knew, the more they understood, the less likely they'd be scared or confused within any set of circumstances.  So when I found out I had cancer, we both looked at each other as if we were in a western duel waiting for the other to draw their weapon.  How do you talk two three olds about cancer? Well, you just blurt it out.  

We're at dinner, and after the two of us finish our meals and the girls are still working on theirs, we decide it's time.  "Girls," I say, "Mommy is sick." "Oh no, Mommy, are you ok?" asked the ever concerned Penelope.  "Well, I will be.  I found a bump on my breast and the doctors tell me that it's cancer." "What's cancer?" asks Sophia. "It's when a group of abnormal cells start to take over the space of good ones, and they continue to grow..." starts Graham.  I look at him as if to say, "Really, we're going to go into it like this?" Graham shrugs with the "how else do you describe it?" look.  By the time we turn back to try again, we've already lost their attention and the moment has passed, as they start talking about poop and boogers.  I find comfort in the fact that they're only three and can't quite grasp the concept of what is happening, that they can understand the simplest of terms which will take place but can't quite comprehend the full scale of what's at risk.

As I prepare for my surgery, the weeks leading up to it, I tell the girls a story, that I keep repeating as often as I can and definitely any time they ask.  ".....not sure how, and don't know when, but at some time there was a sickness that got into mommy's breast.  I felt a lump there that I knew shouldn't have been.  I went to the doctor where they took a picture of it. They told me I was right, that it shouldn't be there.  To make sure, they inserted a needle and pulled out a small piece to test it.  That's when they knew it was cancer and that I need to have it taken out immediately so that it doesn't spread to any other part of my body.  So in order to take it out they need to take off my breast, and because I don't want to ever have to go through any of this again, I told them to take the other as well. But don't worry, they're going to give me new boobies. However, after the surgery, you'll have to be very, VERY gentle with mommy.  I won't be able to do a lot of things that I normally do, so Grandma is going to visit to help out, and some of mommy's friends are going to cook dinners for us to make sure we have enough food.  I won't be able to pick you up.  You won't be able to sit on my lap.  I can't have you climb into bed with me.  Grandma will bathe you and brush your teeth.  But this will only be for a few weeks.  So a way for us to prepare for this is to make some changes now.  Instead of me picking you up to get onto the counter for teeth brushing, you can climb up on your own.  Instead of me leaning over the tub to wash, you can stand up.  And for rocking to sleep, let's see if it's comfortable to put a pillow between us."  Of course after the surgery, it was all about looking at my scars and telling them my boob story.  So I revise and repeat.  Over and over again, so much that they start to retell the story back to me and even draw pictures of my breasts.

The process is repeated all over again when chemo starts and for each and every treatment.  But this time we talk about how the medicine I take will make me very tired and very soar but only for a few days, and that most importantly it will make my hair fall out.  For the first treatment they do really well.  Before my second treatment, 3 weeks in, my hair drastically starts to fall out.  Graham and I are in the middle of technical rehearsals for a solo festival - 21 shows in 10 days.   My in-laws are kind enough to take the girls until Saturday.  It's Friday and opening night.  I'm in the shower washing my hair.  As I start to run my fingers through to rinse, my hair comes out in sheets in my hands.  I take a deep breathe, rinse off, dry and gently seal my hair to my head with the last of my gel.  I get through the work day, through the opening night, and at the party, for fun, show a couple of friends, who are in disbelief.  (apologies to the busboy at RESTAURANT NAME for the clump of hair under the table!)  Fast forward to the next afternoon, after I arrive home with the girls.  They don't believe me either, so even though I want to wait to shave it for Graham to be home and Elizabeth to videotape, I sit on the tub's edge and tell them to run their fingers through and pull gently.  They are in shock but more of amazement than fear.  And for some sick reason they're enjoying it - they are my children after all.   I have to make them stop or there won't be any left to shave!

The next morning, daddy's home.  It's blueberry pancakes, Penelope Pitstop, and cleaning up before Elizabeth arrives to videotape the shaving of the head.  Because she too doesn't believe me, I pull out a clump and within minutes she has the camera recording.  Best friend, Scotte arrives and as we set up in the bedroom, the girls are running around giddy, anxious to get the clippers to my scalp.  But after a couple of strokes they're bored and leave the rest for Scotte and I.  They come in and out of the room, getting quick visual updates, but all in all, they have no problem adjusting.  And that's how it's been ever since.  

For each treatment, we give them a couple of days warning and several reminders, so that when the change happens, they're not taken by surprise.  They may forget in simple moments, but they soon remember. They're told, "Sweetie, mommy can't do that. She just had chemotherapy." or "Mommy's tired right now.  Why don't  read you a story?" The biggest adaption for them is the fact that I can't be near them if they are sick, and boy were they ever sick!  Snotty noses, coughs, fevers.  If my body temperature would even near 100 degrees, I'd have to go straight to the emergency room.  But as a mom, I can't just sit back and watch.  So, very carefully I risk it.  We all wash hands, cover mouths (as much as you can make a 3 year old cover her mouth), don't drink after one another, don't share food, wash clothes often.  And in the end? The three of them sick 3-4 times each throughout the winter, and me? None.  

That doesn't mean that the girls don't try.  Occasionally, I'd hear, "I'm too tired. I had my chemotherapy today." Which I NEVER let slide, that is after all, my line.  But because the girls are so accustomed to talking about it, they also draw it.  I have plenty of pictures with BALD mommy, or family portraits with a BALD mommy.  And when explaining it to their teacher or school friends, they say without hesitation, "My mommy is bald because of the chemotherapy curing her cancer." As if it were just that simple, but to them it is, as it should be.  I see adults do a double take, and look at me with a bit of alarm. Several months after radiation, as my hair struggles to grow back, and hot flashes make it difficult to keep the skull cap on my head, I get more questions from area parents that 'heard' about my condition.
 


So now it's all about my radiation which actually has by little effect on them.  The only time it's an issue is in the morning.  There we days before any of this ordeal when I'd try to sneak out by 7:30, to go unheard, in order for them to sleep a little more and give daddy a little more rest.  And whenever I couldn't I'd delay for 15-30 minutes to spend a bit morning tie with my girls.  But when for 30 straight weekdays you absolutely can't be late, it's difficult.  I imagine it to folks who live in the suburbs and must catch that specific train into the city or the rest of their day will be forever screwed up.  Lesson? Don't live in the suburbs!  So when I'm minutes away from getting out the door, and I hear their bedroom door creak open, I sigh.  "Mommy, I want to get up and eat breakfast with you." "Penelope, I'm sorry but Mommy has to get to the hospital for radiation." "Not again.  I hate radiation" "Honey, we don't use that word. But you're right, I don't always like it either.  But I've only got 16 left to go!" But to her I might as well have said a thousand.  I quiet her down then talk her into eating an oatmeal bar, and wait for Daddy to wake up.

I know the girls have gotten through all of this remarkably well.  I know that I've put an image into their minds that cancer doesn't equal death, that when you are aware, take action and keep things in perspective, you have a chance doing  anything.  

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