Strong. Fighting. Surviving.

A first-hand look at the good, the bad, and the ugly about pancreatic cancer.

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Hi. I’m Kate. Turn ons include IV drips, PETscans, and organic fig newtons. Turn offs include whining, hospital gowns, and artificial sugar. Let’s see how much life I can squeeze in between work, chemo, sleep, and scans.

Archive for the ‘Blogposts’ Category

One Year

I was drafting a story in my mind to commemorate my one year anniversary. Using the iconic roast turkey from National Lampoon’s Christmas Vacation, I would describe the very moment when I learned that I had cancer. The story would capture the feeling of becoming that turkey: normal on the outside, but decayed on the inside. The story would move into how I worked to get past this mental image - using visualization to pump blood back into my organs, yoga to sweep out the cobwebs and dust. Then the story would end on an upbeat note about how I no longer felt like the Griswold’s turkey, but a living, breathing human being.

That was the plan until I found myself in the hospital for five nights. I greatly admire anyone who can do anything creative while hospitalized. For me, the beige walls and linoleum floors were a creative vacuum. I could read emails, but couldn’t compose a response. Text messaging proved challenging. Aside from taking a few pictures, I spent the time in bed, listening to music and thinking about how I should be doing something more productive with my time.

The only reason I’m able writing this is because I just learned that I can finally go home. My platelets are still extremely low and, unless they make a huge comeback, I probably won’t be able to have my treatment next week. I had to stop taking Xeloda (chemo pill) and that was a hard blow. But, if I learned anything from this whole ordeal, it’s that my body is always talking to me, telling me how it feels, I just need to turn up the volume.

So, not quite the anniversary story I had in mind, but that’s the way it goes. Ciao!

11 responses so far

Lucky the frog

LuckyHe’s been through a lot with me. I strangled him when I had a panic attack during my liver biopsy. I woke up from my endoscopy to find that he had been given a smiley face band-aid. Four CT scans, numerous PET scans, two endoscopies, one colonoscopy - he’s been with me through them all.

I seriously considered changing his name after I heard the words ‘pancreatic cancer.’ Jinx or Curse seemed more appropriate. I didn’t have the heart to go through with it and, looking at him sitting on the packing crates, I know that he is indeed Lucky.

Let me rewind a few months. It’s December 18th and I’m sitting in a meeting about the new office building. Someone is complaining about the cube size. Someone else is concerned about having a longer commute. For ninety excruciating minutes I sat there quietly, dumbfounded by the fact that, in all likelihood, I wouldn’t be alive to pack up my desk and move to the new building. I was a cancer newbie, still digesting my diagnosis. Someone said the move was only eleven months away - a lifetime away to me.

So here we are, November 29th (almost a year later!) and Lucky is helping me pack up my cube. I actually put him inside a crate, next to my stapler. When I started to close the lid, he looked up at me in disbelief. His eyes said it all. How could I possibly treat him like an ordinary desk accessory when he helped me get through the roughest months of my life? As you can see, I decided to that he was too precious to be packed away.

The point of my story is simply this:
My coworkers are thrilled about the new building, but I know their excitement doesn’t compare to the pure joy that I feel when I think about it. Lucky and I have been through a lot this year and I know he’s going to be happy in his new home.

3 responses so far

Chemo Shuffle

The Chemo Shuffle is very similar to line dancing. The steps are generally the same for everyone, but there are slight variations that make each person’s dance unique. Being a purist at heart, I chose to keep my version of The Chemo Shuffle very simple. It goes something like this:

1. Sign in, grab a cookie.
2. Scope out a good chair.
3. Give a blood sample, ask for Daffy Duck band-aid.
4. Get hooked up, eat cookie, drink Naked juice.
5. Marinate, listen to some tunes.
6. Head home, have another cookie.

What was once a simple (and somewhat enjoyable) dance has become complicated and I’m having trouble keeping up with the music. The problem is that I’m missing a dance partner, my platelets. They’ve been MIA recently and I’ve had to sit out the last two dances because of their absence. I can’t dance without them and I’m nervous that they’ll stand me up yet again.

Tomorrow’s Chemo Shuffle will be the same as always, but there will be a new twist - a two-step combination of worry and anxiety.

5 responses so far

Putting

Do you know why I love putting? In general, most people suck at it. It requires patience, practice, and perseverance - a combination that is difficult to sustain for an entire round. No one expects you to be good at putting. I don’t have high expectations when I walk onto the green and I’m usually lucky if I finish a hole with only three putts. The best part of putting has to be the little happy dance people do after sinking a long one.

Fighting cancer is very similar to putting. The bar is set pretty low and any victory, no matter what size, is worthy of a happy dance.

I wasn’t allowed to have my treatment last Wednesday because my platelets were too low. It didn’t come as a surprise because I had very little energy last week. In fact, I almost passed out on the elevator ride up to the juicing room. I’ve only been denied treatment once before, but regardless, I can’t help feeling disappointed when my body doesn’t cooperate.

It took some convincing, but my doctor agreed to let me try again on Monday. He’d prefer that I took another week off, but I didn’t like that idea. While I’m feeling much better than last week, I’m still nervous and fearful that I’ll be turned down again.

Hopefully my blood-work looks good tomorrow and I’ll receive treatment. Sure, it’ll be a small victory, but like a good putt, will still deserve a little happy dance.

(artwork: Ned Sonntag, 2005)
7 responses so far

Dryer Sheets

We all have milestones in our lives - birthdays, anniversaries, whatever - dates we celebrate every year. Today is one of those milestones. Eight years ago today, I married my husband. We celebrated with a nice dinner out - I actually had wine! Unfortunately, the house is now quiet and I’m left with only my insomnia, laptop, and the sound of my laundry being tossed around in the dryer.

It occurred to me tonight that I’ve started to dread milestones because I can’t help wondering whether I‘ll be around to celebrate it again next year. Honestly, I’ve been doing this ever since I was diagnosed. What if this is my last winter? What if this is my last spring? Summer? Fall? And now I’m back to winter again. I’m tossed around and around, just like the laundry in my dryer.

To me, it’s important to think this way occasionally because it makes you appreciate your life at that given moment, but this is getting ridiculous. I just switched my closets from my summer to winter clothes and couldn’t help wondering if I’d be around next July to wear my favorite sundress again.

What’s next? Will this be the last time I replace the toilet paper roll?

When you think about it, this particular train of thought isn’t unique to cancer patients. Anyone could start the dryer and wonder if it will be their last load. Unless you win the lottery, my guess is no - you will have many, many loads of laundry in your future.

I’m tired of thinking what if this is my last <insert milestone here>. I’m tired of being tossed around in the dryer, but I can’t seem to open the door and climb out. Maybe I need to learn how to enjoy my time on the fluff cycle. Really, who doesn’t love the feel of warm laundry or the smell of dryer sheets? If this is to be my new home, maybe I need to embrace the lint filter and make friends with the mismatched socks.

6 responses so far

Scared

There are so many things to love about Halloween - candy, costumes, jack-o-lanterns, more candy - we all have our reasons. This year, while stumbling through our local haunted forest, it occurred to me why I love Halloween. While the mutilated bodies terrified me, I couldn’t help thinking how nice (almost refreshing) it was to be scared by something I knew wouldn’t kill me. Admittedly, I was petrified while being chased by a masked man with a chainsaw, but I knew I wasn’t in any real danger.

At one point, we had to pass through a dark tunnel with bodies hanging from the ceiling. My legs, already wobbly, refused to move. My husband was behind me, encouraging me to go in by myself. Surely if I had the strength to face cancer, I was strong enough to go through the tunnel by myself. I’m not exactly sure what happened next - the strobe light was very disorienting and there were ghoulish faces coming at me from every direction. I think the analogy is obvious, but sufficed to say that I feel a little braver for having made it through the tunnel, even though I covered my eyes for most of it.

The rest of the haunted forest was a blast - I tripped countless times, completely fell down once, and screamed until I became hoarse (I found out that screaming can be very therapeutic). The best part of all was the fact that I was physically and emotionally drained afterwards and slept soundly for the first time in months. Perhaps I should add some horror movies to my Netflix queue. Any recommendations?

3 responses so far

Chemo Room Etiquette

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.
8 responses so far

Blissful Ignorance

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.

3 responses so far

Nestled

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.

2 responses so far

Online Crack

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.

7 responses so far