Strong. Fighting. Surviving.

This is short list of general rules and guidelines that should be followed when you accompany a chemo patient to the chemo room. They are based on my observations over the past few months and I will add to them as need be.

1. If you aren’t a chemo patient, you don’t get a cushy chair. I don’t care if you have to pop a squat on the floor, we should never have to stand there waiting for a chair because your healthy butt is occupying one.
2. Eat your Big Mac before you step foot into the chemo room, even if that means cramming it down while standing in the elevator. Most chemo patients walk the line between nausea and hunger - the smell of french fries will usually send us running for the bathroom.
3. Don’t ask where a patient has been lately. Everyone has their own treatment routine and, often times that requires a few weeks of rest in between treatment. Don’t ask the nurses about a certain patient - they aren’t allowed to answer this question.
4. Speaking of nurses, they’re here to help me, not you. I know the water fountain is all the way on the other side of the room, but get up from the floor and get your water. Get me some while you’re up!
5. Never look cuter than the patients. That means no True Religion jeans, UGG boots, or Juicy shirts. The chemo room is not your runway and if you see us staring at you, it’s because we want your french fries.
6. Finally, the chemo room is all about us. Whatever we want, we get. So hand over the UGGs and no one gets hurt.

Lloyd:  Just give it to me straight. I’ve come a long way just to see you, Mary, the least you can do is level with me. What are my chances?

Mary:  Not good.

Lloyd:  You mean not good, like one out of a hundred?

Mary:  I’d say more like one out of a million.

Lloyd:  So you’re telling me there’s a chance? YEAH!!!

As they say, ignorance is bliss and no one characterizes this better than Lloyd Christmas in Dumb and Dumber.

What are my chances? It’s the first thing you want to ask and the last thing you want to hear. Odds, chances, prognosis. A percentage has never held so much importance. I was too chicken to ask the question and I’m sure Dr. Smith was relieved that he didn’t have to answer it. He simply said ‘Our goal is remission.’ His voice was full confidence as if there was no doubt in his mind (and the Oscar goes to…).

I’ve done my homework since then, but in that waiting room, I knew I couldn’t handle hearing the answer, and so I didn’t ask the question. In the weeks that followed, I was asked the question many times and felt foolish because I didn’t have an answer. Why didn’t people understand that I didn’t want to know the answer? And, more importantly, why were they asking me instead of Google?

Please give me a chance. For days, that’s all I could say. In fact, I woke up one night sobbing those words, pleading for a chance. I don’t know who I was asking, but I got my small sliver of a chance. Not even that. I got a sliver of a sliver of a chance and I’ve held onto that sliver of a sliver of a chance for ten months now.

What are my chances?

People, I implore you, please stop asking this question. Whether the answer is 99% or less than 2%, it’s just a number. It’s a statistic that’s filled with a zillion different variables. I’m not a male in his 60s, so how can the survival rate for pc possibly apply to me? Sure, I have moments when the reality of my chances becomes almost unbearable, but it’s at those moments when I try to focus on how strong I am, both mentally and physically. And, really, isn’t that more important that a statistic?

Bad haircut aside, Lloyd Christmas is my hero. I think we should all be more like Lloyd and build a lifetime around our one in a million chance.

I love the word nestled. It conjures up images of down comforters, flannel pjs, and good books. It’s also very similar to Nestlé - makers of all things chocolate - need I say more?

Right now, I’m nestled nicely within my current chemo treatment. I’ve been on this schedule since December and it consists of an IV treatment of Gemzar (every Wednesday - two weeks on, one week off) and a pill called Xeloda (four daily - two weeks on, one week off). After nine weeks, I have PET/CT Scans to check on my progress.

Honestly, I’ve always been a little afraid of routine. I used to connect it with being stagnant or in a rut, but I must admit that this particular routine gives me a certain amount of comfort. It’s easy for me to say that because my body has been responding very positively to this treatment. There is a laundry list of possible side effects and I’m incredibly lucky that I only experience a little fatigue. In fact, today was one of those days where I just didn’t have the energy to get off of the couch.

Not only do I feel very fortunate, but I also feel very guilty. I read stories about other cancer patients who are suffering because of their side effects and I have to wonder what makes me so lucky. I’m almost ashamed to say that I look forward to my treatment on Wednesdays - I know the chemo is making me better and, let’s face it, I enjoy having the day off work.

As comfortable as I am in this routine, I understand that there may come a time when this chemo will stop working and I’ll need to change treatments. Chances are that my body won’t be as tolerant to the new chemo. So, with that in mind, I’ll try to enjoy being nestled in my current treatment schedule and remind myself that it is possible to find comfort in a routine.

Vices come in all shapes and sizes. Mine? Online cancer support groups. They promise you warmth, comfort, and hope. They can be found listed on trusted sites and are often hosted by well-known organizations. But beware: they are online crack. I learned early on that I needed to steer clear of these message boards. The information offered on the sites is often unsubstantiated and sometimes just down-right wrong.

I haven’t visited a message board in months…until last night. Hello binge!

An hour later, I’ve overdosed on the desperate pleas for hope, sad messages of lost loved ones, and rude comments about why some people deserve pc. I crash incredibly hard and suffer through the rest of the night and into the early morning. I spent today feeling completely strung out, exhausted, a walking zombie.

Time to go cold turkey again. Is there a support group for support group junkies?

The problem is that I would love to share my energy and optimism with the support groups, but need to figure out a way to do it without becoming overwhelmed by the negativity. I need to hire an offensive coordinator to come up with a game plan. A way for me to quickly sneak in, leave my little nuggets of hope, and get out before I’m lured into reading the posts. Maybe I need to come up with a formal job description and post an ad on Monster.com.

Until the position is filled, I’ll try to ignore the siren song of the message boards. I acknowledge that online cancer support groups are detrimental to my emotional health, but, unfortunately, there isn’t a patch to help me kick the habit.

It’s 2:28pm on Sunday, October 7, 2007 and I’m starting to think that Al Gore may be right about this whole global warming thing. The temperature is in the mid-80s and the sun is beating down on me. We just left the air conditioned showroom and immediately encountered this unbelievably steep hill on Belair Road (Bel Air is a lovely town, by the way). Sweat is already starting to show through my purple shirt. Someone made the comment that they should change pc’s color from purple to white so we wouldn’t get overheated.

We reached the crest of the hill and joked that the hard part was behind us. We crossed traffic, took a right towards the playground, and spent the better part of half a mile leisurely walking downhill in the shade. I was more than happy to let gravity do its part. But then I saw them - four people jogging towards us. Just random joggers, right? Just random joggers in purple shirts? Oh crap, they’re part of the race and I have to climb back up this brutal hill. We kept joking about it, but my laughed had a nervous edge to it. We reached the base and, as a tribute to my days of suicide sprints, I touched the ground and turned to face the hill.

It was a long, slow climb, but made very sweet when Maddie asked to hold my hand. (Her first choice was a piggy-back ride… yeah, right.) A woman asked if I was Kate and was interested in hearing the story behind the Ugly Shoes Team. She asked if I had to have the Whipple surgery and I didn’t correct her when she said I was lucky that I didn’t need it. I know she meant well, and I just didn’t have the heart to tell her that I was diagnosed too late to have the surgery.

The rest of the race went by very fast and, before I knew it, we were back in the showroom, surrounded by other sweaty purple shirts. It was a fantastic walk and I still feel blessed to have been able to participate in it. I expected a few weepy moments, but had only one - at the opening ceremonies when my name was called out as a survivor. I joined four other survivors in front of the crowd and it felt elated by the experience. I’d like to make the Ugly Shoes Team a tradition, and hope that I have the privilege to stand in front of the crowd as a survivor for many years to come.

A huge thank you to everyone who supported me, both financially and emotionally.

The Bel Air TeamHOPE Walk raised more than $70,000 and I’m very proud to report that the Ugly Shoes Team was responsible for raising $8,000 (correction - make that $9,000)! On behalf of the purple community, I’d like to send a very special thank you to Ken and his team for organizing the race to support PanCAN’s efforts.

I could have easily written about this topic, but felt it deserved more attention than my usual posts. The first time I heard the phrase ‘Touched by Cancer’ was at my mom’s funeral. She was diagnosed with mesothelioma in 1999 and passed away in 2001. I’ll never forget hearing the minister use that phrase to sum up my family’s pain and grief. Touched? Are you kidding me???

 

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