Strong. Fighting. Surviving.

A very wise frog once sang ‘It’s not easy being green.’

We all know the song and its message. Kermit was teaching us to accept the unique physical characteristics that make each of us special. Kate has always loved that song too, but lately that particular line has a very literal meaning. Simply put, she’s having a very tough time now that she’s actually feeling green, sick that is.

As she’s written before, she never felt accepted by the chemo crowd because she didn’t look or feel the part - no nausea, no hair loss, no nothing. She’s had two rounds of her new treatment and is feeling every bit of it. The day after treatment is great - she calls it her ‘chemo buzz’ and she’s very energetic, bouncing even. But then the buzz wears off…

She told me there are two layers to the pain - the first is a general dull muscle ache that’s very similar to a bad hangover (like there’s a good kind?). It’s the second layer that gets to her. The pain is localized in what she imagines are the tumors. I’ve tried to tell her that she should try to think of this pain as a good thing - that the treatment is working, but, as you can imagine, that’s hard for her to do.

Kate asked me to write a post because she hasn’t been feeling very creative lately and I really can’t blame her. Anyone can slap together a few paragraphs when life is good, but it’s incredibly difficult when things aren’t so bright. I wish Kate would read her old posts and try to get back in touch with the girl that wrote those words. She’s still hoping for the best, but it’s much harder now since the pain has become part of her daily life.

She told me yesterday that she can’t stop thinking that the pain indicates that the tumors are growing, when in fact they’re probably just another side effect of the chemo. The logical side of her knows this, but she has a tendency to ignore that part of her. She might actually get some sleep if would just take a second to look at the timing of the chemo and the onset of the pain. I’m not the smartest frog in the pond, but even I can see that that makes sense.

In two weeks, Kate will find out whether or not this new treatment is working and I’m afraid you might be stuck with me until then. And, since I’m now the lead frog, I need your help - I’ve been trying to keep Kate distracted, but there’s only so much one frog can do. Please email her your dirtiest jokes, funniest YouTube videos, or cutest pet pictures…or just simply leave a happy comment. Every little bit helps.

With love from the lily pond,
Lucky

‘She’s mule-headed, stubborn enough to make it through this.’

Once her mind was made up, that was it, game over. She dug her heels in and wouldn’t budge. That was my mom. She was stubborn, bull-nosed, mule-headed…the list goes on and on. It served it well in life - she was rarely refused anything. It was simply easier to say yes to her because you knew you would eventually. However, I’ll never understand why, when faced with cancer, my mom decided not to fight. Her stubbornness, once an asset, became a glaring liability. I watched her accept her fate with seemingly open arms. Instead of stubbornly fighting cancer, she stubbornly refused treatment. Nothing I said would have changed her mind. I believe I inherited my stubbornness from my mom. Unfortunately, I think I also inherited a freak cancer gene from her as well.

Stubbornness has helped people in times of crisis and most would agree that it is indeed a blessing when you’re facing cancer. My mule-like attitude has given me the strength to persevere through a year filled with challenges and disappointments. While I’m very thankful to have this mule-like trait, I realized this weekend that it’s also a curse. I spent a good majority of time on Saturday raking leaves. These weren’t those wonderfully light and fluffy leaves from early fall. No, these were the limp, soggy ones that continuously clog the leaf blower. While it felt incredible to be energetic once again, I’m paying for it now. I am beyond sore.

While filling my sixth lawn bag, a thought occurred to me: I need to learn how to ask for help (Wow - that was hard to admit). I have plenty of friends and family who would be more than happy to lend a hand, but my stubbornness keeps me from accepting their help. Maybe I associate it with weakness, like I’m admitting that cancer is starting to affect my life. Or maybe doing things for myself helps me stay in control. Whatever the case, it’s blatantly obvious that I need help (ouch - still hard to say). I’m going to try to silence my inner mule and accept help when help is offered. Beginning  today, I’m going to start asking for help. So, consider this your warning. Friends, family, strangers on the street: Be sure your offer is sincere and don’t be surprised if I accept your offer by thrusting a paint brush in your face. 

PS: My platelets are really struggling these days (Mine: 11,000/Normal 150,000). I wasn’t able to have the port procedure and have also missed a few treatments because my numbers are so low. I’ve had two platelet transfusions, and, for the second transfusion, it took The Red Cross several days to find a match. Please, please, please consider donating your platelets to The Red Cross. Cancer patients around the country need your platelety goodness!

You’ve seen her shopping for kitten heels in the mall or carefully selecting red peppers in the grocery store. She’s the woman who steps onto the elevator and is able to ignore the whispers and awkward glances. She’s the person who openly embraces the changes to her body and welcomes any opportunity to discuss her new life. She radiates hope, courage, and life.

You should see the way she walks into the treatment room. She’s confident, composed, and even a little defiant. The cancer tried to take her hair, but she stayed in control by shaving her head. She celebrated her hair loss with an armful of new hats and scarves. Sometimes, when she looks in the mirror, she sees a stranger - a person with cancer, pale and bald. She feels strong and vivacious, despite her appearance. Whatever you do, don’t feel sorry for her. She doesn’t want or need your sympathy. She’s proud of who she is and all that she has accomplished. More importantly, she understands that cancer has given her the opportunity (or the motivation) to become the person she always wanted to be.

Make no mistake, she’s not me…not yet at least.

Usually a doctor recommends a port-o-cath as soon as a patient is diagnosed, but that didn’t happen to me. It took an epiphany. The fact that my doctor didn’t mention it reinforces the scary statistics that are attached to stage IV pancreatic cancer. Of course, I could have asked my doctor about it. That would have been the smart thing to do, but something was holding me back. I wasn’t being stubborn or vain. Frankly, I was afraid to acknowledge that I would have cancer long term. There was something about getting a port that made the cancer feel permanent. It’s absurd, I know, but that’s essentially what a port meant to me.

Well, after a year of weekly blood work and treatments, I had my epiphany. I finally realized that having a port didn’t mean that I was giving up my hope for remission. It meant that I was finally able to look at my diagnosis and accept that I’m in it for the long haul.

Living long term, with or without cancer, is my goal and it’s about time I start making decisions with that goal in mind. Epiphany aside, this is a huge step for me and I almost feel a little bit more grown up for having made it.

Growing up in the pond was often treacherous, but we stuck together. Occasionally a friend would be injured or sad and we’d hang a ‘No Wake’ sign on her lily pad to tell everyone to hop quietly.

I just finished making a ‘No Wake’ sign for Kate. I don’t know if you’ve heard, but these past few weeks have been a bit tough. She spent a few days in the hospital attached to an IV pole. And then, just when she was getting back to her normal self, she received some nasty test results. Her liver stopped responding to the treatment and, while everything else remained stable, she was told it was time to try a different treatment. This news sent Kate into a tailspin. She didn’t want eat, sleep, or even watch her favorite Matt Damon movie.

I was really worried about her last week, but then I read her recent blog post. It sounds like she’s okay with the various side effects that may accompany her new treatment and is ready to face this new challenge. She felt really bad for going into hiding and apologized for not returning my calls or emails. Needless to say, I was relieved to read that she’s back to her normal stubborn self. But, just to be on the safe side, please observe the ‘No Wake’ sign.

P.S.: Check out this incredibly moving post from NPR’s Leroy Sievers. ‘It all comes down to strength’ (but a little Lucky doesn’t hurt either).

Enough time to hear the news that I need a new treatment.

Enough time to feel the crushing blow of disappointment that my body isn’t cooperating.

Enough time to accept the fact that the cancerous activity in my liver has resumed.

Enough time to feel despair and anguish.

Enough time to get a quirky new hairstyle before my hair falls out.

Enough time to get a new pedicure (color: Room Service).

Enough time to go shopping for some new hats.

Enough time to enjoy a glass of wine and a Christmas cookie.

Enough time to stop feeling sorry for myself and enough time to identify my new mantra:
Bring it on, bitch!

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!

He’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.

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.

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)