Strong. Fighting. Surviving.

Tim and I exchanged puzzled looks and the doctor, sensing our confusion, repeated the question. ‘What did you do?‘ At first I thought it was rhetorical - as in what did I do to get cancer - but then I realized he was asking a fairly routine question. Looking back at it, the question itself wasn’t that confusing, it was the tense. There I was, wrapped in one of those Tyvek envelops they call a gown, glaring at the doctor because he used the past tense.

It wasn’t the doctor’s fault. I know most people in my position would quit their jobs, travel the world, blah, blah, blah…but, I was rather annoyed that he made the assumption that I wasn’t working anymore. I wonder what other assumptions people have made about me, or about cancer patients in general.

I’ve seen my fair share of assumptions and, after searching online, found that I’m not alone. I understand how easy it is to make assumptions and, before I was diagnosed, I was guilty of making a few myself when it came to cancer patients. So, in an effort to help all you non-carcinoma folks out there, I thought I’d start a list of assumptions that I’ve either experienced or observed over the past year. Just remember - When you assume, you make an ass out of you and me.

1. Type of cancer: A lot of people assume I have breast cancer - I guess that’s because I have breasts. I get that a few times a week and still have yet to come up with a witty response (any suggestions?).
2. Depression: Despite the stockpile of anxiety meds, I don’t think I’m depressed. I have the occasional meltdown, but for the most part, I think I’m in a good place. Maybe that’s the denial talking.
3. Pity Compliment: I despise pity compliments. ‘At least you look cute in hats.‘ Thanks, but I looked cuter with hair. Just a bit of advice, try to avoid using ‘at least‘ when giving a compliment.
4. Gifts: Don’t assume that presents need to be more profound or meaningful because I have cancer. I still love chocolate and jewelry.
5. Hair loss: I went a year without losing my hair. Don’t make the assumption that someone wearing a ‘F*ck Cancer’ shirt doesn’t have the right to wear it because she has a full head of hair.
6. Restaurants: Please don’t make me pick the restaurant because you think I have an aversion to a certain food. I hated making the restaurant choice before cancer, and I still hate it. I’ll let you know if something doesn’t sound good.
7. Cancer Questions: Don’t assume that I don’t want to talk about cancer. If you’re comfortable talking about it, then so am I. Talking about it actually provides some sense of comfort for me, so don’t be bashful - if you have any questions, just ask me.

Please note - While based in truth, these are meant to be light-hearted. Please don’t take any of them personally - they aren’t based on any one situation.

How do you define your future? Are you a fiscally-minded person who sees life neatly divided into quarters? Or do you pay homage to the European philosophy that life is made up of a series of mini-holidays? Are you able to look into the future and clearly see yourself with your spouse, two kids, and a golden retriever?

Truth be told, I’ve never had a clear picture of my future. There were too many possibilities and, like shopping at a discount store, nothing seemed to fit right. My future has always been more like a mirage in a desert - a blurry image of a woman surrounded by family, friends, and a barn full of horses. Now that cancer is part of my life, the mirage is even cloudier and includes countless traps.

I recently read a blog by a cancer survivor who wrote about her daily errands and almost forgot to include the news of her recent clean scan. I hope to one day reach the point where I can accidentally forget to report my results. Go grocery shopping instead of making of dozens of phone calls. I’m trapped into thinking that my life will be over if I get bad test results. Of course I know this isn’t true, but still it’s virtually impossible for me to plan anything until after I receive the results. I spend weeks saying ‘we’ll see’ or ‘I’ll let you know’ when invited out by friends. Forget about trying to plan a vacation.

I can accept the fact that my calendar is heavily influenced by my treatments, but I can’t accept the fact that my future is trapped by test results, or more accurately, the possibility of bad results.

It may be blurry, but my mirage is still out there. The question is will I ever be able to see my future if I’m trapped by my test results?

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.