Lose Yourself

It's been a long time since my last post and many people are wondering what's going on. I've struggled with how to best communicate these last few weeks, because, quite frankly, it's not pretty.

There's a fine line between gentle honesty and just letting it all hang out. Some things are best for public consumption and some things are best left to private journals. I've made several earlier blog attempts, but I wrote them when I was feeling abosultely awful. It was the blog equivalent of a punk rock concert. There was screaming, thrashing, and chaos all at once. Here's my best attempt at something more civilized, with melody and cadence to temper the minor keys.

I'm officially bald now. My hair started to fall out the day before my second treatment. Rather than wait for it to fall out on its own, I opted to just go ahead and shave it. Special thanks to the Cancer Support Community for arranging a volunteer hairstylist to do the deed. I didn't have the heart to ask my regular hairstylist to do it. She's become a great friend over the years, and I knew it would be too difficult for her. My amazing brother, Jeff, went with me and got the Telly Savalas treatment too. (He looks much cooler, though, since he is also sporting a Fu Manchu mustache.) Brett wanted to shave his head too, but Grace begged him not to. Two parents without hair would be too much for her, so we kept it to one.

A few days after the shaving, we went over my head with duct tape to get the remaining fuzz off. I can't say I've ever done that before.

The day before I shaved my head, I had the amazing fortune of receiving a big box of jaunty hats and scarves from my college girlfriends. Thanks girls. You were right on time and it made my week. Hugs to all of you.

I am now past my third chemo treatment and I'm wondering where I'll find the strength to do five more. Each treatment compounds on the previous ones, and this one was particularly difficult. The nausea and fatigue are now at a deep, cellular level. My mouth has a metallic, disinfectant taste that I can't shake, no matter how much dark chocolate I eat.

The treatments are settling into a predictable cycle. Every other Thursday I sit for an infusion. Friday I go back to the hospital for a Neulasta shot which helps my bone marrow make more white cells. Friday through Monday are spent trying to just hold on and withstand powerful nausea. By Tuesday, my white cells have started to plummet, and an unearthly tiredness sets in. On Thursday I go back to the hospital for a blood draw to check my counts.

Each time, my counts have been below the level that a normal body needs to fight an infection, and I'm warned to be very careful about going out in public, eating raw fruits and vegetables, and not keeping vases of flowers in the house. During this time, my bones ache for several days as my marrow kicks in to overdrive. By Monday the aches are going down. This gives me 2 days before I go back to the chair and start the cycle all over again.

Yesterday I had a hard time making it through my regular blood draw. My mind is beginning to associate the hospital with pain and nausea. I could barely walk in the door without tossing my cookies. When they flush my port, I can taste the saline and Heparin, which have a nasty disinfectant flavor. It's not fun for a girl who loves to savor good food. Give me a delicately cured cheese, or a Pinot Noir wine. Or ask me to differentiate between the various nuances of single-source dark chocolate. But don't make me taste Clorox! Thank God for Chris, the phlebotomist. He saw I was not doing well and kept me talking about my weekend and my job to distract me.

Distraction is now my key to survival. It's all a mental game. How do I keep my mind elsewhere so I can get my body to take the pain? The answer to this is coming in ways I wouldn't have expected.

"Lose Yourself" by Eminem is becoming my theme song. When I just need to escape my body, I play that song as loud as I can on my iPod. Many mornings while I'm still in bed, I listen to it to give me juice to get up and start the day. "You only get one shot, do not miss this chance, this opportunity comes once in a lifetime." Success is my only option... failure's not." "Listen, you can do anything you set your mind to."

The reality show "Say Yes to the Dress" provides blissfully mindless entertainment. For those who haven't seen it, it's a TV show based at a big wedding dress shop in New York City. The whole basis of the show is that brides come in and try on wedding dresses. That's it! Isn't it fantastic? A whole show where you get to wonder if that neckline really looks good, or if she really needs to reconsider the beading on the waistline. Life's problems are boiled down to wondering if the shade of the veil matches the dress. Love it.

Winston Churchill has become my other favorite distraction. Winston wasn't a saint, but to me he represents pure, 100% perseverance in human form. The guy just refused to quit, even when the odds were very bleak. I hang on to his quotes and repeat them over and over, especially, "When you're going through hell keep going." Words to live by, right there.

But by far, the biggest and best distraction has been friends and family and all the love and support they bring. I have this mental picture of myself running a marathon. I've left the starting gate where there were cheering fans, balloons and streamers, and a 20 piece brass band. Now I'm out in the dessert. It's quiet and lonely. It's getting hot, and the road is starting to climb. It's too early to think of the finish line. I just have to put one foot in front of the other, feel the pace, and keep my mind steady. One foot in front of the other. Breathe.

I think about quitting. This is too hard. I didn't even sign up for this race! I was involuntarily pulled from the crowd! Hey, I'm not even a runner! Forget it, I'm just going to sit down and stop. Then something happens. Someone I know comes along and runs beside me for awhile. They help me keep pace, give me words of encouragement and hand me a cold drink. It keeps me going.

All the cards, phone calls, emails, meals, and visits are my race support. Many of these messages have gone unanswered. Many gifts have come without me sending a thank you note in return. Please know that I've gotten them all and am grateful for each one. There are some days that a simple, quick email has kept me going. Right now I'm conserving my energy for the race itself and am unable to respond to all the good will that is sent my way.

Thank you for helping me run. Love, Susan