Congratulations, You've Won

I filled out a survey the other day, distributed by the government to determine the eligibility of special circumstance cases for social security assistance. It was colorful; each page showed groups of diverse youth mingling with the elderly, either figuring out their taxes or trying to get a game of ‘buddy tag’ going. I’m still unsure. At the end of the survey, I clicked ‘submit’ and received the following message: “Congratulations. You have a disability. You are officially eligible for financial assistance.” “Wait, silly machine. You tell me wrong. I have no disability.” I quickly reviewed the facts. I live with permanent caretakers. I have most of my meals prepared for me because I can’t lift my arms too much. I have a difficult time opening childproof lids most of the time. Apparently this qualifies me as disabled. We don’t live in a country where a disability is a hot item to pick up, like a mullet or a chocolate phone. Disabled, regardless of how P.C. we try to be about it, is not an enviable state. I envisioned myself running a marathon through Central Park. As each person would pass by me, they would shoot me an overly-dramatic look of mock sympathy and sheer pleasure at passing me and leaving me in the dust. Race. When did it become a race? Perhaps it became that way growing up where high school had to follow junior high. And college had to follow high school. And successful, high-paying job that actually does something relevant for the world and falls within the parameters of something you love doing has to follow college. Well, either that or kids, depending on a small discrepancy in your upbringing.

I had the privilege to travel around South Africa 7 months ago with a beautiful, brilliant teacher and activist, Sandi Burnett. Sandi teaches at Santa Monica Community College, and has long been an activist for those with disabilities. She has a slower pace herself than most, and faced the challenges this posed with determination, a smile, and a wave of her hand. All while in Africa! Annika, her daughter, and I were both slightly apprehensive about how it would work. For me, there were small dilemmas: Do I help her up onto this giraffe or let her do it herself? Do I bring her her skewered goat or is it not really a problem for her to get things from the kitchen? What surprised me most, as we toured the beautiful country, was that I had imagined she would insist with the now characteristic wave of her hand that Annika and I maintain our normal pace, not the deliberately slower one we had adopted. Instead, she welcomed it and we all stayed slower, deliberately. And I saw all of South Africa at this slightly slower pace. It was awesome, like being on psychedelics, but not.

I don’t intend to compare disabilities. It’s like trying to figure out which Hardy boy you like best. All different. Yet all beautiful. I did notice though, while I was staying in the hospital this last month, that I developed my own walk: slow, half-zombie, half small struggling child. I was amazed at how conversations changed because of my slower pace, both in walking and talking. It was beautiful. I saw each person so differently. I listened more. And sometimes (my favorite) we wouldn’t say anything at all to each other. We’d just sit there and kind of ‘be’ with each other. And the race (remember the race?) kind of dropped away. A year of slowness. That was the message. Congratulations, you’ve just won a year-long trip to the land of slow poke. But I remember how much fun South Africa was at that slightly slower pace and how much more I saw of it because Sandi was my guide. I think slowing down might not necessarily be such a bad idea.

the fall

The weather’s beginning to change. It’s a subtle change, but even still, late last night (or was it early this morning?), I reached over and felt the cool breeze that begins to welcome fall. I closed my window, stared up at the night sky, and welcomed the fall.

I’m staying with the Salvatori family in a house nestled right at the mouth of a beautiful canyon. Annika’s back in town. “How did I manage to spend my summer in between Santa Barbara and Utah?!” she exclaims every once in a while. We’re both a little shocked at the strange events that have taken us down a very different road this summer than we planned. To aid in my recovery this week, we’ve made a goal of hiking up the canyon each day, going further and further every time we hike.

I woke up feeling very sad this morning. It happens sometimes. Some mornings I feel wonderful, others I wake up almost in shock. It takes a few moments for me to register where I am, what’s going on, the fact that I have a tube extending out of my chest. This morning in particular, I’m wondering how to keep myself motivated throughout the year. It seems daunting.

One thing I hate about this blog is the constant struggle I feel to share, but not burden. I’m scared of mentioning just how pissed off I get sometimes. A good friend shared some advice with me yesterday. “Allow yourself to get pissed, despair, and curse the fates.” The most difficult part of this isn’t the physical pain or discomfort, surprisingly. It’s waking up every day with limited energy and strength, unable to do work, to be a contributing part of the world, to move forward in the way I want to. As beautiful as the homes are that I’ve been recovering in, the fact still remains that they become my universe, my world; most of the time I’m not well enough to leave. If I do, there’s a constant fear of infection and catching anything from anyone or anything. I hate it. It makes me so angry, to feel left behind.

So I hiked further, I climbed higher. I keep stretching for the top of the mountain. These last few days I’ve had my old strength back. I’ve relished in it. You can’t fully understand what it is to feel this until you’ve had it taken from you. As I hike, I can see fall beginning to take over. It’s subtle (we’re still in August after all) but it’s coming. The inevitable. Pretty soon it will be too cold to hike. Winters in Utah are generous; they have a habit of always lasting a little longer than you wish they would. Even as I bask in the beauty of the mountains, I become more aware of how temporary this season is, every season is.

I’m listening to a song. The lyrics woke me up this morning. “When your love grows cold and your heart grows dark and the blame seems to fall on you, look how seasons must change and don’t think it’s so strange that your love goes in circles too.”

But this morning, I’m still pissed off.

Passing the Final

Yesterday I visited with my team of doctors at the Huntsman Cancer Institute to discuss their evaluation of my first round of chemotherapy. I have to admit, I was a little nervous. If they found that even 1% of the cells in my bone marrow were cancerous, I wouldn’t be able to move forward in the regime they’ve set out; it would be necessary to go back and repeat another round in the same phase (the chemo equivalent of failing the final and repeating the 9th grade…no good). To my delight and the delight of those who joined me in my hospital visit, the doctors literally ran past each other coming to my waiting room to be the first to tell me…I’m at 100% remission!!! (This is the part where you yell “oh yeah, baby!”) What does 100% remission mean? you may be asking. It means that after they ran a series of tests on Thursday, they were unable to find any signs of leukemia in my body; they’ve beaten this sucker down. This is the absolute best result we could have hoped for. It means my body responded like a true pro, and we are ready to move forward. So wouldn’t this mean that you’re finished and recovered? You may also be asking. It changes very little about my anticipated regime. The problem is that, while no leukemia cells were detected in the tests, the doctors are still positive that there are rogue cancerous cells lurking in the depths of my body, hiding out behind my rib cage, plotting and waiting in the dark corners of my blood for the right moment to come back with a vengeance. Worse, these cells have the uncanny habit of coming back in the central nervous system and brain (which is just no fun for anybody). So from here on out, the chemo will be preventative, aggressively so. The point is to keep attacking and killing cells for the next year or so, until there is no possibility that these cancerous cells could still be hanging out.

So it’s great news, and cause to celebrate. I start my second round (but in a completely new phase of chemo) on Monday, and will be staying with the Salvatori family throughout this coming month, close friends of my family’s. I’m so grateful for the healing that has taken place thus far at Tom and Laurie Eastwood’s home; they’ve been incredible hosts to me and my ever-growing posse. I know that the healing and strength will continue, despite what lies ahead. One more beautiful morning looking over the aspen covered mountains of Park City, and much gratitude to be moving forward.

Judd

Looking Out

When I was younger, my dad used to take my siblings and me on afternoon hikes each Sunday. Matching neon fanny-packs in tow, we’d climb for hours until we reached the summit of a small mountain on Salt Lake’s east bench, where we could see over the entire valley. There was always something thrilling about that view. People became rather miniscule, my elementary school seemed so insignificant I could crush it between my thumb and index finger. The world I inhabited from day to day disappeared, or shrunk, and was replaced instead by this bird’s eye view of a much larger sphere, which seemed to extend into an oblivion.

During the past year, I stood on the tops of mountains in Rwanda and South Africa. I climbed to the tops of peaks in the Virgin Islands. I stood on top of a mountain in the middle of Los Angeles. I scaled one of the highest points of a small island in the Pacific Northwest. What is it about this position, this perspective, that keeps me seeking out the next hill to climb?

Feeling my strength coming back, I convinced Erin to come hiking with me yesterday. The day before, I had discovered a trail close to Tom and Laurie’s house (I’d been trekking up and down the cul-de-sac previously). Once again, I found myself on a summit, looking out over the beautiful valley below, trying to take in the immensity and scale, and find my place in it all.

I’m well for now. I’m here, you can see, advancing up the mountain. I couldn’t sleep last night. I’m blessed and cursed with a better knowledge of what’s to come. Even as I enjoy the exhilarating perspective from atop the mountain, looking down I can already sense that in just a few days I’ll be descending back into the valley. That is, as others have put it, the nature of the beast. For clarification (I noticed slight confusion in cards and emails) the word ‘recovery’ takes on a completely new meaning in chemotherapy. Rather than refer to the svelt display of agility one might suppose I possess in order to be climbing hills, the doctors consider ‘recovery’ a short period of time, usually a week, in which they have successfully brought my body back from the brink of death to something closer to ‘normal.’ This has to occur before they can move on to the next round, but the tricky part is that, for better or worse, they can’t let me hang out in this ‘recovery mode’ for too long. The cancer cells are too notorious for hiding out or coming back. So the hope is that as soon as I ascend, they bring me back down. Don’t hate them. It’s their job. For the next year.

I stand on top of the mountain. I marvel in the perspective it gives me, the connection, and the strength I feel with every breath (they’re deeper up there, you know?) I hesitate only momentarily and then I begin the descent, knowing that afterwards, there will be yet another mountain to climb to the top of.

year of the mohawk

I have a shunt. No, it’s true. Dirty as it sounds, I have a shunt. Look it up.

Praise be to the Gods, I’ve been feeling better over the last two days, ironic considering the fact that my last chemo treatment was on Thursday. Perhaps it was that we were all bracing ourselves for the worst: thus far, chemo has had a reputation of taking me out of the game for at least a few days. Quite the contrary, I’ve been sitting up, walking around, eating healthy portions of all sorts of high-calorie foods (the gay boy in me is forced to remain a silent observer in this new world of trans fat…he’ll have his revenge eventually) and yes, I’ve even taken a few small outings. All this is to say that I’ve been experiencing a rise in strength, energy and good spirits that is cause to celebrate. Will it continue? I’m learning not to make any plans with this whole leukemia thing; the second I make a definitive decision, things go a different way than I expected.

I received some news from my oncologist on Thursday. Most likely it was not intended to be ‘news,’ or rather ‘new news.’ I think I had been given different impressions about my state from various doctors, and this was sort of the ‘clarification point.’ Yes, the chemo is going exactly as planned. My white blood cells and red blood cells are super-stars. Equal props to my 1% cellularity. However, the doctors set out on Thursday a very different long-term plan than I had been expecting. Much is still unknown and will depend on tests taken next Thursday (my last official day of this chemo round) but the expectation is that I will not be in a condition to work for at least a year, and that during that time I will more likely than not go through about three more rounds of chemo, passing into different stages of treatment. Like I said before, this is postulating, but it’s educated enough that it gives me reason to begin envisioning my life over the next year, very different than planned for those who may have been party to some of my latest travel schemes. I’ll admit it’s been an overwhelming reality to consider over the past few days. Suddenly, the game changes. Different challenges and obstacles exist than did before. It’s no longer just chemotherapy and the nausea and the headaches and the fatigue; in fact, I have a gut feeling that my body will learn how to navigate its way through those. What scares me most about the next year is the fear that I won’t progress, that I won’t move forward or that as some reaction to all of this I might lose my motivation or ambition. My “A Team” has already started covering the logistics: how do we get Judd in guitar lessons? How about some Spanish tapes? Why don’t you just write “Chemo! The Musical” already?! It becomes a question of the immediate and the long term: starting guitar lessons in the immediate, sure, and soul searching for greater purpose in the long term. Both will need to happen. I find my motivation in purpose, and I don’t know how to change that. Then again, I don’t know that I need to.

My friend Kortney surprised me yesterday with a box full of movies and a short outing to a fast food chain that shall remain nameless. Over chicken wings and a frosty, she said to me, “you just gotta take this thing a day at a time.” Sage advice. As I said before, if there’s one thing this has taught me thus far, it’s to be patient and see how the story unfolds. I’ve been taken care of, immaculately, and in the meanwhile, I wake up every morning to the beautiful sunflowers outside my window and commit to taking this on, knowing that I will be taken care of. And from there, I find my strength.

My love and sincere appreciation to you all.

Judd

Keep Dancing

"I get up. I walk. I fall down, meanwhile I keep dancing."--Rabbi Hillel

This is my favorite quote. These words resonate with me this evening and I find that I am so very present to the dancing that is going on in all of our lives at this time. These words, spoken decades ago, have for me expressed a simple but profound life lesson. I'm sure my brothers would defer to the humorous Utah adage "When life gives you lemons just make lemonade." They did just this last night by turning Judd's definitive hair-loss into an opportunity for matching mohawks. I predict a massive mohawk comeback in the Park City area due to the edgy yet dashing Hardy boys.
I arrived at the Eastwood's house this afternoon with Skip and Zach in tow. While I moved my essentials into the house the boys quickly moved down to the tv area. As I made my way up and down the stairs I observed a simple moment--all four of my brothers and my favorite cousin gathered together watching silly comedy in the family room. Nothing terribly amazing was happening but in that quiet, unassuming moment I felt the peace and companionship that radiated from all of them.
I personally know that this journey has had sad and scary moments but what I am moved by daily is the overwhelming amount of loving and joyful moments experienced. For every not-so-nice moment there is an afternoon spent in the company of people who love each other deeply.
Judd can feel your love and support. His body is responding to the chemo in the exact way the doctors predicted, although he hasn't yet started to lose his hair. Judd and his entourage's way of dealing with this mystery is as always with humor. A betting pool has been started, with a five dollar buy-in, for the day his mohawk "is no longer sustainable." If Judd defies the odds and doesn't lose his hair he gets all of the money! How's that for making lemonade?

With Love, erin