Competitive But Realistic

I'm extremely competitive. A game of Guesstures turns me into a nail-biting, answer-shouting, seat-bouncing freak. Lost field hockey games in high school would leave be seething under my mouth guard and cranky for hours after. And a bad run on the track, forget it . . . devastated. While training for races throughout my adult life, although my mouth is saying, "It's not about my time, it's about having fun", my competitive spirit is screaming, "It's totally about my time!" I was broken-hearted during my training for my first (and last) marathon seven years ago, when just a few weeks before the big event, I injured my knee, causing pain that should have prevented me from going forward with that run. But there was no way I was going to come that far and not go all the way. That day it was truly NOT about my time. It was about finishing. And I did. But cried almost the whole way home from Burlington, VT in pain. Stupid, you say? Yup. It kept me from running for a long time. Last June, I decided I was ready to get back out there. A half marathon this time. Doable. Even though I struggled some days while training with my two girlfriends, when the run came, it was the best I felt in a long time. The runner's high was in full effect. And crossing the finish line with a respectable time and no injuries at 39 left me feeling pretty proud of myself. Running is important to me. A lot of people don't understand it. But I love it. There is a feeling that comes with running that is tough to explain, but anyone else who is a runner knows exactly what I mean and you are shaking your head right now.

So, this cancer thing has put a bit of a damper on any running regimen. My leg muscle have collapsed to the intense build up of chemo . . . deteriorated from the shapely, strong pillars they used to be to these jello-like logs that burn from just walking up stairs. Last week I decided to get out there and try to run a mile and get in shape before the Race For The Cure 5k this weekend. I felt great mentally, so I went for it. The minute I began, I knew I would not last. The feeling was like nothing I had ever experienced. My legs literally didn't work like that anymore. In fact, not only did they feel like they were 400 pounds each, but they couldn't even "move" like the legs of a runner. I likened myself to a woman 9 months pregnant and possibly 10 cm dilated, trying to run. It was impossible. SO after about 200 yards, I stopped. I realized running a 5k was not going to be possible. I cried. I want my body back. I want so badly to run this race with my amazing supporters, some are people who have never run before and have trained for this event. I want to run with them, to show them how proud I am of them for working so hard and reaching their goal. I want to run with my old running mates and my new running mates and my friends and family and all the people who have showed me so much love and warmth and pure, beautiful goodness through these long six months. But I can't. Tough for this competitive girl to admit, but I am just not strong enough yet. I guess I have been using that strength in other ways lately, so I can wait until next year to "run" this race when I am a one year survivor. And I will be running for fun . . . and for time :)

Rock Star? Not Me.

Tomorrow the last cycle begins: take my steroids, get my levels checked, chat with oncologist about my progress, pack my chemo bag with magazines and silly games, and pray that it's not so bad on Friday. In my head I'm thinking, "Toni, how can it be bad when it's your last one?!" But having now experienced the dreaded "cumulative effects" I was warned about in May, I have some trepidation. Seriously, my first three treatments left me feeling like a rock star! I could not believe how well I was handling it all. Sure, I had a few days where I felt drugged and unlike myself, but I would rebound quickly and look forward to getting the next one behind me. Heck, I even ran a 10k the day after my second treatment. Rock star.

But this rock star has fallen. I feel like I was misrepresenting chemo. I mean chemo is supposed to make you look thin, pale and sickly, right? But the only thing different about me was absent hair and maybe some dopey eyes from time to time. Until treatment 4. And that was nothing compared to 5, the one I have still not fully recovered from with 6 only two days away! So the face (my face) of chemo has changed. In the three weeks between treatments, my body has transformed. The "face" of chemo has changed for me over the last month. Want to know the truth about chemo? Day 1: infusion. Day 2-5: drugged feeling, need for sleep and lots of it, but muscles so sore it is difficult to get comfortable to actually enjoy the rest, inability to get out of bed or off the couch in the morning, opening eyes even hurts, interest in food dwindles as the taste of metal takes over, mouth becomes dry and unable to be refreshed, certain foods completely gross me out (dairy products and coffee), while others are a staple to nutrition (watermelon and grapes).

Day 6-17: I am not becoming sickly and thin because the steroids have made me retain water, so my complexion is plump and maybe I even look a little bit younger as my wrinkles are somewhat filled in. However, my pants don't fit because that water I am saving like a camel has appeared in my legs. My cankles have turned into thankles and feel like they could explode if I make one wrong move. The taste in my mouth, unbearable at times, have to keep brushing my teeth. Still tired, but outdoing the fatigue is the extreme muscle burning in my legs even from walking up and down stairs. Now, I have to admit, when I had my chemo class months ago I watched a video of people discussing how chemo affected them. One woman said she was winded just making the bed! I turned to my husband in shock. I could not imagine that could be possible. Even though I have not gotten winded making the bed, I understand. I totally understand.

Day 18-20: Coming around! Just starting to really taste things again. Energy level is increasing.

Day 21: Infusion 6. Yup, the last one. So, I am thrilled, elated, proud, emotional . . . and dreading the next 20 days, especially as school starts on Day 5. Can't let my students down. Gotta be "on".

Over the past several days I have thought a lot about people I have met through this chemo journey, people who have had to endure chemo a lot longer than I, people who are having setbacks, people who are facing cancer a second time. It breaks my heart. To have had chemo behind them, celebrated, had their hair grow back only to find out months later the cancer is back? Devastating. I can't complain, not out loud (well, maybe only to my husband). I've only had to endure three and a half months, six total treatments, three of which left me feeling like a rock star. I do not need that title. Chemo has humbled me. My body has given in but not my mind. I am climbing my way back each day to the woman I remember pre-diagnosis. There are so many people that go through so much more than I, so much more. My journey has been short in comparison, my effects . . . minor. And although I will be tearfully celebrating Friday, I will be taking with me the stories of every woman who filled with chairs next to me and shared the good, the bad and the ugly with me, a complete stranger, but a sister to any woman with breast cancer. Forever on my mind . . . the women who have endured and keep enduring this disease. They radiate strength. They are the rock stars.

When Nothing Is Happening

My son talks incessantly. Really. He can't stop. It is a constant stream of thoughts and ideas, a running narrative of absolutely everything or complete nonsense. He can talk about very intriguing things like what "webbins" Mario and Luigi would use in a battle with Darth Vader and Darth Maul. He can convey his life plan as if it is happening tomorrow: to own his own Silly Bandz store, not get married, but adopt a little girl and homeschool her, so she can work at the store and because he can teach her lots more things than school. Or he can just ramble endlessly. The mean kid at school might want to turn to him and yell, "Shut up for five seconds!" But I'm his mom, so I can only think that in my head on these long summer "no-plans" days.

So last night I decided to treat him to a stargaze while Dad was working late. We put on our jammies, squirted on some bug spray, searched for our favorite "Magic Blanket" and headed across the street to "Cemetery Hill". Now, in my mind, stargazing is supposed to be a calm, quiet, peaceful look at the stars. Apparently, in Ethan's mind, it was an excuse to run around like a lunatic howling at the moon and creating the most nonsensical knock-knock jokes, which then put him into a fit of fake laughter. "This is so fun, Mom. We should do this more often." Look, I'm not totally insensitive. I love that he was having fun, and I did a little real and fake laughing myself. But this was not in my mind's eye when I imagined our evening together. So, I sat him down on the blanket and asked if we could just be quiet and watch the sky. Sometimes, as a parent, I will say something to Ethan and then be so grateful no one else heard it because it made no sense whatsoever, but at least HE didn't know. Last night was one of those moments. In my frustration I said, "Ethan, sometimes the best moments in life are when nothing is happening." It is not profound in anyway and definitely needed some explanation. But, upon explaining, it even became more clear to me.

Amidst all the summer hoopla, when I think of my best summer moments two things come to mind. First, it doesn't get any better than waking up each morning to a kiss on my bald head accompanied by a "Good morning, Mommy". Next, one afternoon I am standing in the kitchen sneaking a chocolate chip off the top of a magic bar and I hear "Mommy?" with a slight panic in his voice as if he is not sure where I have gone, yet I am only a few feet away from him. I return with a quiet "Yeeessss?" And since he really doesn't need anything, just wants to make sure I am close, and the best part is I know exactly what he is doing, he replies with, "I love you." Best moments.

So, when we finally sat still and listened to the crickets and smelled someone's fire burning and made wishes on the stars, even though he wished for Star Wars Mighty Beans, he also wished we could do this every night. Best moment.

Top Ten Good Things About Crappy Genes

Upon discovering that my sister also carries the BRCA gene causing her now to have to undergo the same surgeries as I, I felt the need to come up with a "cheer up" top ten list for our situation. And here it is:

Tina,

I'm sorry! This gene sucks. It is forcing you to make decisions you should not have to make and it sucks!

But let's look at the good things about this:

1. We will have no place for breast and ovarian cancer to grow which puts us in a pretty good spot!

2. We will be watched like hawks by our doctors and screened regularly, so if we ever do get cancer somewhere else, it will be caught early, and it will be survivable.

3. When we have our surgery, our husbands will not be able to complain about anything and must wait on us hand and foot!

4. We get to have those tattoos we always wanted . . . right on our nipples! Ok, that's not a good one.

5. We are going to have some nice boobs! No sagging! No bras! Our friends will be soooooooo jealous!

6. We get to tell people our story and encourage people with histories like ours to get tested and maybe even spare someone the heartache of cancer!

7. We finally can confirm that I was NOT left by gypsies like you always told me when we were little.

8. We can pose naked in Playboy for an informative article on gene testing!

9. No more periods!

10. We will always have someone else who knows how we feel. We are in this together, and it is going to be ok. We are both cancer-free and we are going to stay that way!!

I love you!

Good Morning, Leg Hair

Good Morning, Leg Hair!

I don't fully understand your growth , but I will not challenge you! Shaving will never again be a complaint from these lips. You have been diligent in growing back despite two impending treatments on the horizon. I commend you for your efforts and realize you must be exhausted from your trip. I will happily lather you up today and send you into the depths of Bob's razor blade, allowing you the rest you truly deserve.

Thanks,

Toni

PS-On your way back, could you encourage your friends on my head?

If You Really Knew Me

I am a self proclaimed reality show junkie. I have just come upon my latest MTV addiction following years of The Real World and Road Rules and all of the challenges in between. Now sucking me in is, If You Really Knew Me, where high school students are put to the test to break down stereotypes and social barriers by bringing students together and finding a common ground: pain.

I'm a teacher. I've seen this great change attempted. The result is very empowering . . . at first. So I am intrigued to see how it is done and if the long-term effects will be seen. Don't get me wrong, it is a great intervention! Anything to get teenagers to really "see" each other and understand where people "come from" can promote a much more positive and united environment, which is lacking in the clique-filled schools. I know, I was a part of these cliques in high school and nothing has changed. But, if people really knew ME in high school they would have seen indescribable pain from my parents' divorce and the more jarring aftermath, dealing with having very little supervision around my house, pressure to keep up appearances with my popular friends who grew up in wealthier families, the shame of feeling responsible for my best friend ending up in a hospital one night, the insecurities about my looks, my sports, my boyfriends. In high school so many of us buried the pain, put on the face we think others expected us to have and moved forward.

I admit to doing this in my adult life as well over the years, even though I know better, even though God has given me the strength and courage to not compare myself to others like I used to and to be grateful and happy with what He has blessed me with in my life because those things are endless. If you really knew me, you'd know I am not sitting around devastated about cancer every day. If you really knew me, you'd know that I may not feel great but I feel great. If you really knew me, you'd know when you use words like "inspirational" to describe this cancer thing it makes me uncomfortable because I am just doing exactly what you would do. Because just like in high school, we are all way more alike than we ever even knew.

Forced into Perspective

A tragedy in our town puts my cancer in perspective. On Saturday, one of Ethan's classmates was killed in a fire that claimed not only her life, but the lives of five of her siblings, leaving two parents and one child to comprehend this extreme loss. It leaves behind a pain in this community and forces us, as parents, to explain the unexplainable to our children. We left for vacation the day the fire occurred and received word of the deaths through a text on our way down. The numbness that followed, the shock that still lingers, and the realization that my little boy, snuggling his lamby in the backseat, was going to have to wrap his brain around death on a level that he has not had to concerned me and raised questions: Will he now be afraid of our house catching on fire? Would he perseverate on how his friend lost her life? Would he be mad at God? Would he connect her senseless death to the fragility of life and begin thinking our deaths, fearing them? We decided to wait until after vacation to tell him. I solicited advice from my friends. Bob and I agreed telling him that God saw his friend and her siblings were in trouble, so he sent angels down to save them from the fire and bring them safely to Heaven was the best way to explain it. He knows that once we are in Heaven we do not come back to Earth because God needs us more, and that Heaven is a beautiful, fun, carefree place where all our dreams come true. This is exactly how I ended up breaking the news to him days later on one of our last walks to the beach. Starting the words was the hardest, but he made it so much easier, sensing what I had to tell him was important, he stopped me and said, "Mom, don't wait, just tell me. I want to know now." So he took my hand and we kneeled down on the sidewalk where I proceeded to tell him in an emotional and not so eloquent way. I will never forget his wordless reaction. He bowed his head, shaking it up and down and let out a sigh that broke my heart. He was silent for a moment, then asked a lot of questions. And in true "kid form"he said, "I'm really sad about Mackenzie but I am so happy you didn't say it was Catlin (his best girlfriend in class)." We immediately, still kneeled there on the sidewalk, just prayed.

Kids are amazing! They take in the information and deal with it in their own way whether they fully understand it or not, they find a way to deal with it and surprise us each time. He is processing each day, mentioning her during many quiet moments, praying about her daily and nightly, healing in his own way. I am proud to watch him throughout his processing. It comforts me. Because sometimes when I think 3-5 years down this cancer road, I get worried. I am not so worried about my own mortality, as I feel the same way Ethan does about Heaven, but I worry about him. I think if God's plan is to take me earlier than expected, he will process and teach others and surprise us all.