Out of the Woods, Yet?

A friend recently asked “are you out of the woods yet?” I’ve bought prime real estate in the woods. These days, the woods are never really very far. I’ll meander through them, occasionally find a clearing where they cut off, but most often these days, I’m in the thick of the woods. My scientific breakthrough last week that being in my ‘spring break’ week of recovery did not in fact mean I would be feeling healthy, took a turn for the worse. The side pain is back with a vengeance (I call him Wally) and nausea and me are close pals. The problem is, I couldn’t—no, let me clarify—didn’t want to write to any of you about this because it’s honestly a little too painful to just deal with, so I’m able to accomplish very little when it’s going on. So it’s morning (Sunday morning, to be specific). And I have a small respite from the pain. So I’m writing.

How can I take you back through the crazy journey I’ve been going through over the past five days (try three months!!!) There are moments the pain is sharp enough to feel like a knife. I don’t say that to extract pity, but to try and be as honest as I can. This sucks. This really sucks sometimes, and I’ll be the first to come out and admit it. I’ve really missed having my old life this last week. I’ve missed having the freedom to walk around and plan my own day and travel to different places. I miss care-free laughter, or pure enjoyment. I miss being able to eat (almost) anything I want and not worry about how it’s going to hurt for the next three hours as it digests. I miss my hair. I know that’s selfish of me to say because I’m one of the lucky ones with hair, but I miss my full head of hair, nonetheless. Or feeling attractive. Or flirting. I miss that one a lot. I consider myself pretty good at it too, which makes it harder. I miss having people not cringe a little when they touch me for fear they’ll ‘break’ me. I miss not always watching the clock at night, counting down the hours till I can go to sleep. I miss beaches. And ocean.

And yes, today, I miss South America. Sure, there is a part of me that would have liked to be there right now, instead of here. I’m making the best out of what I got, but I do sometimes wish things had turned out differently, and I were still a little more innocent than I am now.

I understand that it never could have been. I don’t believe in ‘could have been’s.’ Thinly veiled lies we tell ourselves. This is what has happened. This is where I am. But I also believe in mourning. And sometimes that means holding yourself as you cry and let go of what your dreams once were, what they used to look like, and what you acknowledge they will not look like again.

Long Day’s Journey

I’ve just passed my seventh hour in the infusion room, and I haven’t yet received chemo. Never failing to surprise me, the chemo process took an unexpected detour today. I came in around eight in the morning, the best time to receive chemo because the infusion room is usually pretty empty. The first step in an average day of chemo is having my blood drawn. It’s an important step because (ironically) they can’t administer chemo if I’m not well enough to receive it. In other words, I’ve got to be healthy enough to get poisoned. I’m usually waiting in a hospital room for a half hour or so while my blood is analyzed, typing away vigorously at my computer and catching up with friends on my new addiction, myspace.com. Afterwards, my team of doctors brings me the results of the labs. There was a look of shock on my doctors’ faces this morning. Apparently, my blood counts were low, dramatically low. I’m in my last week of chemo (for this round) and they informed me that not only am I neutropenic, but also fairly anemic. Suddenly it was like pieces of a puzzle came together. So that’s why I look pale as a ghost. So that’s why I’ve been freezing lately, no matter how many layers I put on. And why it feels like I’ve been hit with a ton of bricks every time I stand up. And why I didn’t feel up to working out yesterday. (Incidentally, I’m apparently the talk of the infusion room. No one can ever believe some of the things I do with low blood counts. My hikes, my exercise regime and the recent venture into yoga have truly earned me the title ‘chemo boy.’) So the day changed drastically for me. My next stop after the doctors’ office is the infusion suite, where I sit back in a lazy-boy chair and usually receive my chemo. But for the past five hours or so, my body’s been receiving blood in copious quantities. A blood transfusion gives me healthy blood full of high counts to balance out my low ones. It’s necessary in order to ensure that I can handle the strong drugs, and at this point, I feel worlds better. The good news is that none of this blood count silliness actually affects my ability to receive chemotherapy today (unlike a few weeks ago, when I was told to go home and let my blood counts recover for a full week). The only down side is that receiving blood is a long process. It feels like I’ve been in this chair forever. My butt’s numb. My sister Erin has been a dutiful attendant, bringing me snacks and occasionally fluffing my pillow.

I’m constantly surprised by this process. I would have imagined that, given the fact that I only have a week left in this particular round of chemotherapy, my counts would be inching towards normal. Just the opposite. Today forced me to reckon with a slightly intimidating thought: as long as I’m in chemo, I’m at risk of low counts, no matter what point I’m at in the process. It’s slightly frustrating, as I’ve been explaining to people that each round brings me from normal to low counts and then back up again. So much for that hypothesis. Cancer is a constant process of applying the scientific method. You never know what’s actually happening to you until you develop an educated guess about the situation, and test it against all the incoming evidence. Even then, most guesses are subject to new counter-evidence, as I learned this morning. Thus goes the rollercoaster. My day of chemo’s finally through. I’m gonna get out of this chair and try and get some feeling back in my butt.

Home, Sweet Home

You know you’ve got angels on your side when a king-sized bed appears in your room out of nowhere. My bed is massive. I love it. Mom found it on the side of the road through divine inspiration and brought it over early Sunday morning to the new digs. My brother James, sister Erin and I have been busy as bees decorating, moving furniture and really trying to make this small two-bedroom apartment feel like ‘home.’ The entire thing has been a labor of love; every piece of furniture has a story behind it, some friend who stepped in to assist, not to mention our grandma Mimi—passed on three years ago—whose charming furniture and even more charming spirit watch over the apartment.

I have been so fortunate to be carried through this ordeal with the help and assistance of friends like Tom and Laurie Eastwood, the Salvatori family and most recently the Voros family. My sincere thanks is owed them for giving me temporary homes. Still, I can’t tell you how it feels to move into a new apartment and have a place to hang my hat more permanently. My room is full of beauty. I’ve hung a traditional Congolese healing mask above my bed, and a similar mask representing courage watches over me from the opposite wall, dramatic but appropriate accents to the space. I’ll need both. James, Erin and I will be staying here until after the new year, when I plan to return to New York (pending my good health). So for the coming holiday season, this is perfect. The apartment is located in downtown Salt Lake City, in an outdoor shopping bonanza known as ‘The Gateway.’ We chose the apartment for its central location, which makes it easy for me to access many things—libraries, parks, Anthropologie—by foot. It feels like we’re living on top of some magical, antiquated film set where I expect to look down and see Judy Garland strolling down the cobblestone streets, inevitably being wood in song by Mickey Rooney. Plus, the view from our window looks out easterly to the Wasatch Mountains, which this time of year are covered in deep reds and yellows that make you speechless (autumn really is the best time of year to see Utah’s beauty). For all of this, and for all those who stepped in to assist us in creating this home, thank you.

It’s fitting that I have a new space of my own to take on chemotherapy; it’s been challenging. It seems no sooner did we unpack our bags and hang the last photo on the wall then chemo took over and started doing a fairly vicious number on me. The past three days have been rough. I’ve been feeling sick, weak and anxious, which has made sleeping and resting difficult at times. A sharp pain in my side, which I’ve been complaining to my doctors about for several weeks, is finally being addressed through a series of CT-scans and tests. Hopefully we should root out the cause of this extreme discomfort soon and I can get on with my life, unfettered by unnecessary pain. These few past weeks (including this one) I’ve had chemo treatments four days in a row. The side affects compound, and by Wednesday or Thursday, I usually feel pretty crummy. But I have the weekends to recover, as well as the knowledge that we’re slowly inching our way to the end of round two of chemo! Days pass slowly, but months rush by. Already, I’m a fourth of the way through this ‘year of the mohawk.’ I’ll be back in action soon, I just need some good incubation time before that happens. I can’t think of a better place to be doing it right now than in this new home, with my family.