A Pain in the Neck

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.