Choose Your Own Adventure

When I was a kid, Choose Your Own Adventure books were all the rage among the children of St. Rita’s for awhile. In case you’re not familiar with them, here’s the deal: All the books start out the same, and you’re the star of the show. Maybe you’re a time-traveler or a space explorer or a detective. Then there comes a point in the story when you have to make a decision: Do you rescue the princess or continue exploring the castle? Do you scale the cliff face or try to make your way through the mountain passage?

Depending on your choice, you would turn to the corresponding page and continue the story while facing the consequences or your decision. Sometimes you ended up adrift in space. The End. Or your story continued and, if you chose correctly, you’d end up the hero.

Before video games were ubiquitous, these interactive books were pretty exciting. Years later, I even bought a funny version about dating called Night of a Thousand Boyfriends as holiday gifts for friends. I read that book in a few hours.

As a child, though, these books filled me with anxiety. I hated getting eaten by the saber-toothed tiger. I’d sometimes keep a finger on the decision page so I could go back and reverse my choice, or at least explore the other options.

I’m still not big on making decisions. I waffle back and forth, weighing my options. It doesn’t matter if it’s deciding what to have for dinner or whether or not to take part in the Brentuximab vedotin trial.

If you believe in astrology, I can attribute it to being a Libra, the most indecisive of all signs. It’s supposed to be because Librans seek balance.

Either way, it drives my boyfriend crazy. His question, “What do you want to do?” is invariably met with, “I don’t know. What do you want to do?” At restaurants, I often wait until the last possible moment to decide what I’m going to order. Then I’m often plagued by what I didn’t get. Should I have ordered the pappardelle instead?

Oddly, when it comes to big decisions, I try to not think about the what-ifs. As someone who has wanted to get this whole cancer treatment out of the way as quickly as possible, my first instinct was to go with the more conventional augmented ICE treatment for relapsed or refractory lymphoma. It’s six days of actual treatment over a month’s time—but I opted for the Brentuximab trial of three months, knowing that I still might have to do the ICE.

My last Brentuximab treatment is Friday and my scan is Monday. With a success rate of only one-third for the trial, the doctors are mentally preparing me for the ICE. I don’t regret the Brentuximab, but I still have the nagging thought, “You could be done by now.”

Then again, if I’d just gone through with the ICE, I would have wondered about the Brentuximab.

So, in a way, I made the less risky decision, as I’ll likely do both. Since I’m in the only group to receive treatment for three months, we’ll see what happens. My rashes stopped occurring. Does this mean it stopped working? Also, I’ve been getting weird pain twinges in my neck and chest that worry me.

Either way, I won’t get eaten by a prehistoric cat, but on Monday, my story diverges. I really don’t have much choice, though. The next step depends on the PET scan. If the PET scan isn’t clear, turn to option one. If it is clear, turn to option two.

Option one. If my PET scan still shows cancer activity, the likelier of the two scenarios, then I go on to augmented ICE. This can happen as soon as the weekend after this coming one.

The ICE, from my understanding, is basically three days in the hospital of hardcore chemo, 21 days at home (feeling tired, I’m told) and then three days in the hospital again for some more chemo. In between, I’ll have my blood checked regularly to make sure I don’t need transfusions.

This also means that they’ll put in a catheter in my upper chest to administer the chemo and they’ll leave it there. Mostly, I’m grossed out by the thought of having something hanging out of my chest. (I mean, they’ll tape it up, but eek!) Then I get another PET scan to see if it’s finally clear, and move on to the next step…

Option two. When my PET scan is clear, then I get my stem cells collected in a process that takes about two to five days—with some home injections, like the blood thinners. Not very painful, unless you count the heebie-jeebies. I can’t remember everything the doctors told me, but I think when you’re ready, they hook you up to some kind of machine that filters your blood.

It sounds like I imagined that old—untrue, as it turns out—urban legend about Keith Richards undergoing a blood change to beat a heroin addiction. Although I guess it’s still trendy to get IVs, if you’ve read the latest on Michelle Rodriguez and Cara Delivingne. (An aside: Right before the couple went semi-public after hanging out at a Knicks game and smoking electronic cigarettes, I dreamed I was hanging out with Delivingne at a fancy Manhattan apartment and had dropped a real cigarette in an indoor pool, so I may or may not have a Being John Malkovich-style portal into Rodriguez. I had planned to figure out how to control this portal so I could get out during my hospital confinement, but if she’s also hooked up to IVs, then what’s the difference? Sigh…)

My stem cells will be harvested so they can give them back to me after the chemo wreaks havoc my bone marrow.

After that, I start my five days of outpatient radiation. It’s twice daily, though, so I’ll have morning and afternoon appointments. I’m told the actual radiation will take only five minutes, but of course, the appointments are longer.

Then I am admitted to the hospital for five days of inpatient radiation, followed by three weeks for the autologous stem cell transplant for a total of 26 days in the hospital. That’s a long time. Three weeks seemed long, but the extra five days pushes it to a month mark.

They keep you in the hospital for those last five days, because I guess you don’t feel that great. My doctor mentioned something about possibly feeling like you have sunburn inside your esophagus.

For the remaining three weeks, the first week is when the high-dose chemotherapy will be administered. (And, if I don’t already have a catheter to administer the chemo, they’ll put one in at this time.) According to what the doctors say, patients typically feel OK this week, but then feel exhausted the second week. So you’re there the remaining two weeks to rest, recover and keep you away from germs. Part of that time, I’ll be in a form of quarantine. At some point, they give you back your old healthy stem cells.

And then I’m done. Kind of. I’ve been told it takes up to six months before you feel like your old self. Since my Hodgkin’s lymphoma seems particularly stubborn, there’s always the chance it will come back.

So when people ask me what’s going on, I don’t know what to say, mainly because I don’t know. I have a long hospital stay coming up, that’s for sure.

Right now, I’m savoring my last week or so of near normalcy before facing the worst of the treatment. And I wait for the page in this adventure to say THE END.

Please note: I’m running out of photos. Instead of a saber-toothed tiger, here is a yawning cat. A poor substitution, but considering no photos of saber-toothed tigers exist, not bad.

On Cancer Blogging

I’m extremely late to the party on this. Most days, I’ve been working from about 9 am to 9 pm, and by the time I’m done, I can’t look at a computer screen anymore.

But I still think about the weeks-old controversy surrounding the Emma Keller column in The Guardian, in which she asks: “Forget funeral selfies. What are the ethics of tweeting a terminal illness?” It’s a opinion piece about Lisa Boncheck Adams’ Twitter account, in which she tweets about dealing with stage 4 breast cancer.

I didn’t get a chance to read the post before it was taken down, but according to snippets I’ve seen on the Internet, it wasn’t the questions about the morbid curiosity that got people upset — it was Keller’s diagnosing of Adams with a case of TMI. In response to the backlash, Emma Keller’s husband, Bill Keller, also responded with his own column in The New York Times.

The whole thing seems to be fraught with misunderstandings and misinterpretations of other people’s words and intentions. It played out in major convention and social media outlets, but I’m sure people with opinions like the Kellers whisper similar criticisms to friends about cancer patients’ choices on how much they divulge. Since I didn’t read Emma Keller’s piece, I can’t respond much to that, but this got me thinking about cancer blogging.

What I took away from this recent controversy is something that everyone already knows: Everybody deals with cancer differently. And most people have opinions on the way you should deal with it or they way her or she would deal with it. I’m not sure there’s a wrong way to cope. Well, I guess Walter White probably could have handled things better in Breaking Bad. I hope we can all learn from his mistakes and have disassembled our meth labs.

Also, you shouldn’t piss a bunch of people with cancer off. And it’s fine to offer advice, but leave self-righteousness at the door.

At some point, you get tired of absolutely everything to do with cancer, including being told what to do. I almost had a meltdown this weekend after a museum employee told me that my bag was too big to carry through. She did it nicely, but I’d spent the whole time there trying not to get reprimanded, because it seemed like everyone was getting in trouble for something. I almost burst into tears, and when my boyfriend asked me what was wrong, I said, “I’m so tired of people telling me what to do.” (Yeah, I had a rough couple days there.)

Today, I think TMI depends on what you want to know. Twitter is, by nature, full of TMI. Lunch photos. Tweets from companies trying to get you to buy their products. Selfies of so many duck faces. Politicians’ private parts.

My own Twitter is mainly promotions of sites I’ve been working on (check out the article I wrote about fitness/bands/healthy eating/insurance/travel, etc.), followed by cat photos (Facebook is my cats’ main social medium). There are also tweets of inside jokes to two of my former cubicle neighbors, one of whom isn’t on Facebook. And the last category is angry tweets. (The fancy dress I bought on sale is poorly made! This venue is overbooked! Fandango ruined Christmas!)

It doesn’t reflect this blog or even retweet anything from my Pain in the Neck Twitter account. My mom discovered my Twitter feed, linked to a story that I wrote, and she asked me if I was writing about having cancer. So, like a teenager whose diary had been discovered, I just denied everything. She might be reading this right now for all I know.

She doesn’t think I should tell anyone about having cancer. She’s in the cancer-should-be-kept-to-yourself camp. My family wasn’t big on talking about stuff like this. I wouldn’t say it’s a bad thing; it’s just how we are. In fact, I don’t really talk about cancer much in person. That’s why it’s nice to have a blog.

I’m an introvert. Just borderline, if you believe the Briggs-Meyers test; it’s as if I want to be an extrovert, but I can never shake my introvert ways. I stay in one place at a party and wait for people to come to me, often in a nice cocoon of people I already know. Most often, this position is by the snack table or in a comfy chair, but that’s because I love snacking and sitting.

And lately, at parties, sometimes I’ll talk about cancer, but really only if someone asks. Mostly, it’s just a rundown of what’s going to happen. A lot of people think I’m done with treatment, so I feel bad telling them that the worst part is yet to come. I finish up the Brentuximab trial, followed by a hospital stay for at least 26 days, including inpatient and outpatient radiation and a stem cell transplant. Plus there’s possibly an additional month of treatment with augmented ICE.  The blog has been a nice outlet for me to deal with things and keep people updated.

When people find out that I still have several more months of treatment, they seem apologetic. A lot of them say, “Oh, I didn’t know!” That’s because I haven’t really talked about it much. I mostly keep it to the blog. As someone who personally falls somewhere on the spectrum between the Kellers and Adams as far as information-sharing, I keep my cancer news mostly here, in this public forum that feels strangely private.

I find other people’s cancer blogs informative and helpful. I don’t delve too much into them, mostly because I just don’t want to freak myself out. But I know other people’s stories are there, and if I want to read about their experiences, I can. As one blogger wrote in Gawker in a much more timely response to all this, blogging is therapeutic and cancer is nothing to be ashamed about.

If Emma Keller calls into question people’s morbid curiosity, including her own, we’re all guilty. Who hasn’t found themselves reading someone’s blog for that very reason? Every now and then, I click on something friends with children share on Facebook and find myself reading a parenting blog, fascinated at something I know nothing about that sounds truly terrifying. I’ll read about all the ways you might physically or mentally damage offspring by not strapping them in properly or by not watching them every single second of the day and night or teaching them the wrong thing. Just a little bit of scary reading to sate my curiosity.

But I think Adams’ tweets serve to inspire more people than it might upset. I’m glad to see she’s gotten so much support.

It doesn’t seem like the Kellers are saying you shouldn’t be able to blog or tweet, unless I totally misread Bill Keller’s column. And they have a choice as to whether they read it or not. I would like to not have cancer. You can’t always get what you want.