Strong. Fighting. Surviving.

I wish I could adequately describe the feeling that hit me when my doctor suggested that it was time that I discontinue treatment. It was about four months ago and my current chemo regimen had stopped working and so he thought it was best that I discontinue treatment and let the disease simply run its course. Don’t get me wrong, I knew this moment would eventually come, but I tried to ignore it as much as possible. I tried to fill my days with lots of fluff so that I wouldn’t think about it, but here it was. I’d like to say that I confidently told him to told him to shove it, but I didn’t. I seriously considered his suggestion. Wouldn’t it be easier to just throw in the towel? I’ve been fighting for a very long time and I’m worn out. I’ve lost a significant amount of weight, none of my clothes fit, and I have to carry around this ugly bag for my pain meds.

The details of that meeting are a bit blurry.  Was I actually supposed to make this decision right here and now?  The room started spinning and I became nausea at the thought of what he was asking me to do. I started to think about all of the things I needed to do when I got home - water the plants, return library books, put away the laundry - and for whatever reason the mundane aspects of my life are what gave me enough incentive to tell the doctor that I wasn’t ready to give up just yet. Somehow I managed to joke that he wasn’t getting rid of me just yet.

I came home, still hurting from the knowledge that the treatment well is quickly running dry. I’m running out of options, but I’m trying to remain optimistic that one of these days something will come along and kill these tumors once and for all. Talking about it is the easy part, actually believing it is the tough part. How do I keep myself hopeful when my odds are dwindling with every treatment I receive?

I guess while I’m not very strong right now, I’m still fighting, and I’ll keep on surviving…and that will just have to be good enough for right now.

I’ve been gone for a very long time, I know, and I’m sorry. Everyone has been so supportive during my hiatus - sending me emails, tweets, etc. of encouragement. I would really rather not relive these past few months, but I believe I owe you some kind of explanation.

I was excited when I reached my one year anniversary of living with pancreatic cancer. I did it! I took a 3 to 4 month prognosis and stretched it to a full year. After one year of living with cancer, I thought I was strong and could take on anything. My foundation was stable and unwavering. I was quite proud of myself, thank you very much. My one year anniversary was something to celebrate. Bring on the confetti and cake! Unfortunately, my two year anniversary turned out to be something very different.

I woke up on the morning of my second anniversary and realized that I was far from happy - In fact, I was incredibly scared. I couldn’t wrap my brain around the fact that, according to most published statistics, I have a mere three years left. Two down, three left. Something inside me snapped and my stable, unwavering foundation crumbled right in front of me. It’s difficult to explain, but this anniversary became a countdown to me…

• Will next Christmas be filled with more gift cards?
• Will I be able to make everyone stand up to toast in two years?
• Will I get to see Punxsutawney Phil three years from now?
• How many more Valentine’s Days will I have?

Now you all know how I feel about statistics, but I let the power of the numbers outweigh my personal beliefs. Someone suggested that I go back and reread some of my own posts about statistics and try to recapture the strength that I had back then. But, I didn’t. Instead I created and obsessed over my countdown. Two down, three left.

I don’t believe my countdown is a new concept. In fact, I’m convinced that most cancer patients have their own countdowns and refer to them constantly. Even in remission, I can still see a person take pause while opening Christmas presents to say a quick thank you for this year and pray for another cancer-free year.

So, I created this countdown in my mind and have been struggling with it for months. Enough. I can’t live like this. Well, more accurately, I refuse to live like this. So, the other day, I made my countdown a reality. I actually put the words on paper - and then I burned them. Which, in hindsight, wasn’t the best decision since our backyard is covered with dry leaves and I have no idea how to work our fire extinguisher.

Anyways, it was worth a shot and I can honestly say that I’m feeling better. There was something cathartic about seeing those words burn away.  While I might need to find a long term fix for my countdown obsession, at least in the short term, I seem to have gotten it out of my system. Of course I may need to revert back to using this technique again, but at least next time I’ll be sure to have the fire department on speed dial.

Thanks for your patience, love, and kindness. Warm hug,
Kate

I used to be such a morning person. I loved to get up just before dawn, walk Remy down to the edge of the lake, and watch the sunrise. Then it was off to Boot Camp class before heading to work. It’s weird to think that that really wasn’t very long ago. In fact, it was almost two years ago - just before I was diagnosed. Naturally, I stopped going to Boot Camp class when I started treatment, but my energy level remained pretty high and stayed high for my first year of treatment. Then I started Sutent…

Now my morning routine consists of laying in bed, trying to convince myself to move. Thank goodness Remy isn’t in a rush to get outside in the morning. There are some mornings when I feel trapped under my goose down comforter. My brain and body play tug-of-war on those mornings. My brain is ready to start the day and creates a long To Do list, but my body has other plans…and getting out of bed isn’t high on its list. I eventually make it out of bed just to spend the day on the couch. I take a little comfort in the fact that I usually feel a little better after my couch days. I have more energy following a couch day and usually manage to have a couple of productive days.

I’m not sure why I felt compelled to write about my couch days  -  I don’t want sympathy or anything like that. Maybe this is my apology for not blogging more often. I needed to take the summer off, but the summer quickly turned into summer and fall. So I’m happy to announce that I’m back and thanks to everyone who wrote such wonderful and supportive comments while I was away.

Warm hug,
Kate

I’ll keep this short and sweet. I’m very excited to have been able to participate in New York Times’ Patient Voices: Pancreatic Cancer. There are a few inconsistencies in my story, but I’m simply thrilled that I was able to help spread the word about pancreatic cancer. A special thanks to the New York Times for creating this wonderful program and especially for choosing to feature pancreatic cancer.

Hi folks.  Lucky here again.

One of my favorite places in the pond is over on Lily Pad 7, where you can find the Hop Chocolate Candy Shoppe.  As a tadpole, I used to go there all the time, always leaping home with a mouthful of tasty treats.  I dreamed of working there, and imagined myself eating as many chocolate-covered flies as I could fit in my gullet.

I finally got a job there one day, and ate so much the first hour that I thought I’d never want to see another piece of chocolate again, let alone eat one.  It’s a kind of overload, I think, that happens with most things.  What’s the old quote?  Too much of anything, even a good thing, is a bad thing.

When Kate first started this blog over a year ago, she wanted to write about her own journey as someone with pancreatic cancer - and that’s what she’s done.  Her posts discuss her experiences and feelings at various points in her fight with the disease.  But between you and me and the other frogs, I think Kate has maybe hit a little bit of that overload that I was talking about earlier.  At times, it’s hard for her to write only about cancer - that’s certainly not the only thing going on in her life, and it’s not the only thing that defines who she is.  It’s not what she wants to think about 24/7.  And honestly, after a while, it’s hard to always find something totally new to say - hence the Summer hiatus.

So with your support, I think I might whisper the idea in Kate’s ear that it would be perfectly okay for her, at least from time to time, to write a post or two here that aren’t directly about cancer.  Those posts would continue to tell her story, and still do so against the backdrop of PC - and I think they’d also show exactly what Kate means when she writes “let’s see how much life I can squeeze in between work, chemo, sleep, and scans.”

Did you know, for instance, that Kate just got back from a vacation in California?  I’d love to hear about it.

Hint, hint.

Remember how I talked about the joys of my upcoming summer vacation? I assumed my new treatment would be ‘a breeze’ because it was a pill…an innocent little pill. As it turns out, I spoke too soon. I was completely wrong. Instead of enjoying a nice summer vacation, I’m stuck in summer school - studying something horrible like calculus. Well, it’s not quite that bad, but you get the picture. Fortunately, I only spent a few days feeling sick. Unfortunately, those few days were at the beach.

While I was struggling, I wondered how people could endure this treatment for months on end. My anti-nausea meds weren’t working, I couldn’t eat or drink anything. I finally found some medicine that brought relief and I was quickly back to my normal self, but I went to some pretty dark places during those four days. I doubted my strength and determination and was close to quitting the treatment. I was ready to throw in the towel after four days. Four days.

I tell you this because I want to pay tribute to those people who struggle with pain or nausea on a daily basis. It’s easy to say that you would be willing to go through hell to be healed, but it’s an entirely different thing to actually do it. There are some people who are in constant pain that can’t be relieved by medicine and I only wish I knew how they find the courage to continue their treatment. Apparently I’m not as tough as I originally thought and I have to say that that scares me just a wee bit. If I was in summer school, I’d be looking at a big red F right now. Let’s just hope I can squeeze out an acceptable C before the next round of tests.

I have received some really wonderful birthday presents before, but the one my health insurance unknowingly gave me tops them all. It’s time for me to switch treatments and my doctor recommended a trio of oral and IV meds. The side effects of the new combination would have been very similar to my last treatment and I would have probably spent the summer on the couch. But, before starting, we contacted Guardian insurance to confirm that the new treatment would be covered and, after a week of waiting, they informed us that they considered it experimental and it wouldn’t be covered. The news came on last Tuesday, my birthday, and I was devastated. I basically let it ruin my birthday. No birthday cake or dinner out for me. I went straight home, changed into my pjs, and pouted for the rest of the night. Happy birthday!

Now, a few days later, I’m looking at their decision in a different light. I had a follow up appointment with my doctor and he put me Sutent, an oral chemo. Compared to my last treatment, this daily pill will be a breeze. Of course there will be side effects, but, not nearly as severe as my last treatment or the other one Guardian wouldn’t cover. It’s almost as if Guardian gave me the summer off by denying our request. All of a sudden, I’m on summer vacation from chemo. I don’t have to schlep down to the juicing room for treatment. No bloodwork, platelet or blood transfusions, premeds, or flushes.

However, just because I have July off doesn’t mean that I get to slack off. I still need to be vigilant about my diet and exercise regimen. In fact, I hope that my energy level will rebound on the new treatment and I’ll be able to exercise more. I’ve been a couch slug for way too long…time for me to hit the gym again.

And, speaking of exercise, I’d like to give a great big thank you to my friend Matt. He’s training for the LA Marathon and raising money for the Lorenzen Cancer Foundation. Check out Matt’s blog as he trains for his first marathon since having major ankle surgery. Thanks Matt…you’re awesome!

Hi folks. Lucky here again.

I need to start by saying that Kate doesn’t want to use this blog as a place to provide updates on her health. However, so many of you have been asking how she’s doing, and the last couple of weeks have been particularly eventful, so Kate asked me to take a minute to let everyone know what’s been going on.

As I write this, she’s just been discharged from the hospital. A couple of weeks ago, she noticed a new ache in her side. At first, she was able to write it off to a busy weekend in which she went kayaking, jetskiing, and Zorbing. Zorbing, by the way, is the practice of climbing inside a large plastic ball and being rolled down a long hill. It’s as fun as it is crazy, from what Kate tells me, and if you ever find yourself in the Great Smoky Mountains or the North Island of New Zealand, you should give it a whirl.

Anyways, the ache never really got better and last Monday, Kate ended up in the emergency room because of the pain. She was admitted, and since then has been undergoing some tests to try to figure out what’s causing it. As it turns out, there’s something on her liver that’s pressing on her biliary duct. Kate and her oncologist are ready to attack the problem, and she has an appointment with him on Monday to talk about localized radiation treatment intended to have the effect of taking the pressure off; they’ll also talk about a new chemotherapy. In the meanwhile, she’s also had blood and platelet transfusions to help bring her numbers back up so that she can go home strong and ready for next week.

Kate’s been in good hands at the hospital. She’s thankful for everyone who’s been coming by to visit. Tim’s been with her all week, and she’s been receiving phone calls and emails and lots of well wishes, for which she’s very grateful.

How is she?

Without a doubt, she’s frustrated, tired, bored, nervous, and happy be back at home with Tim and the animals. She’s glad to get out of the bed with rubber pillows that seems to have a mind of its own, occasionally rearranging its position just to make sure she never falls too deeply asleep. She’s thrilled to be untethered from the IV tree and the blood pressure cuff. She’s ready for a Sunday morning in a kayak on the lake, followed by some delicious blueberry pancakes.

And she’s definitely all caught up on recent video releases.

And for all of that, she’s doing okay. Strong. Fighting. Surviving.

And ready to eat something other than jello.

Hi, everyone. Lucky here, just filling in for Kate for a little while.

You know, some days it seems everything’s about numbers and statistics. Even in commercials, we’re always hearing that 9 out of 10 dentists like a particular gum (maybe that last one just doesn’t like gum at all), or that a soap is 99 and 44/100s percent pure, or that the orange-scented household cleaner under your sink kills 98% of germs. We see numbers all the time, and they’re sold as concrete and reliable ways to understand things. “You can’t argue with numbers,” the thinking seems to go. We can even paint pictures with numbers, and we call that art “statistics,” and we treat it reverently as a teller of truths.

The problem with that way of thinking is that numbers and statistics don’t always tell the whole story. Statistics are useful in presenting trends and the big picture, but they really do a terrible job of describing individual experiences. And that’s a problem for my friend Kate, and others who have been diagnosed with cancer: all too often, those statistics are used to try to predict what a single person’s experience will be like in an attempt to answer the natural questions that patients and their loved ones have. It’s particularly difficult with pancreatic cancer, which has some very scary numbers associated with it.

Kate has written about this before, and I thought now would be a good time to revisit that idea - that the numbers are simply numbers, each arrived at by aggregating and then flattening the unique experiences of many, many individuals. It’s such an important lesson to learn that I’m actually going to suggest a short additional reading - an article which has been called “the wisest, most humane thing ever written about cancer and statistics.”

The reading is a short article written by the scientist and author Stephen Jay Gould upon his diagnosis with abdominal mesothelioma, a form of cancer with a median survival rate of eight months. Upon encountering this number, Gould took it upon himself to translate into layperson’s terms the very meaning of median, and infused the term with hope instead of looming dread.

If you do nothing else today, go read “The Median is NOT the Message,” by Stephen Jay Gould. It’s illuminating, it’s inspiring, and it’s hopeful.

[Gould passed away in 2002, twenty years after his diagnosis]

Same day service is great when it comes to things like dry cleaning or shoe repair. It’s not so great when it comes to test results. I learned early on that no news is definitely good news. The more time that passes in between taking a test and receiving the results, the better. While being diagnosed, I would sometimes get “the call” within a matter of hours.

Of course, there are other aspects to my theory. In my experience, typically

• if a nurse calls on behalf of the doctor, then it’s good news.
• if the doctor makes the call in person, it’s bad news.
• if the doctor calls and won’t go into details over the phone, then it’s very bad news.
• if the doctor calls your emergency contact person before calling you, then it’s very, very bad news.
• and finally, if the doctor calls on Christmas Eve while at Dulles airport, waiting to board his flight to the Caribbean, then you know you’re in serious trouble.

I had another MRI this afternoon and I know that if my phone rings tomorrow morning or early afternoon, there’s a good chance that I have something very scary growing on my spine. According to my calculations, if my doctor doesn’t call by Wednesday afternoon, then I might be okay.

So I’m sitting here, staring at my phone, hoping it doesn’t ring. In fact, I hope it doesn’t ring until late Friday afternoon. When I answer it, I hope it’s the nurse calling and she’s at happy hour, drinking a margarita.