Monthly Archives: June 2015

The Circle Of Cancer

Chelsea

Like it’s circular, cellular shape, Cancer surrounds your life once you’ve been diagnosed. Radiating inward, oddly enough, the circle envelops, contains you, putting boundaries on your timeline of existence, but it also creates other circles outside of your own, through the people who will share your experience. The goal, for all of us, is to keep those circles close, but not too close. For some, they accept as many radiating circles as they can into their lives, the clarity, definitions and emotional depth of each weakening as it fades into the distance.

I’ve always made an attempt to limit my circles. I don’t want that much confinement, that weighted emotional potential in my life. I have my own circle I can’t avoid and want to keep as distant and blurred as possible, and then also the circles of my friends whose struggles I will also take as my own. I’m tentative to step within anymore, because I know how quickly they close in on us.

I’ve inadvertently found myself confined by the circles of support groups, absorbing stories of death and depression without end, but just as quickly stepped out. With cancer, I know the circles I’ve created will, at some point, close in on me and I don’t want to surround myself with that emotional confinement anymore than I must.

For some time, the circles have been so far away. My own, fortunately, resides far off in the distance. It will come into focus a bit more when I undergo my next surgery in October, but even then, it’s boundaries are blurred and weak. Where it once rung my throat and threatened to choke the life from me, it’s now as familiar as a coastal border, somewhere far off in the distance.

But the few other circles are not so far away, and one I hoped would disappear completely came back, quickly, forcefully, and now my friend is going to die.

I met Chelsea when we both found ourselves working at a local vegan cafe, built from the neglected shambles of the last cafe, by just a handful of us given the opportunity to try it out. She was a student dietician, dating a fellow vegan, straight edge, distance running friend of mine and we all got along from the get go. Admittedly, it’s pretty much impossible to not be friends with Chelsea. She’s all huge smiles, loud laughs, and an overflowing energy that becomes instantly infectious. Our friendship grew from the cafe, around veganism, and then through our discussions about running nutrition and the obsessive personalities that both I and her boyfriend, Alan, harbor.

What I didn’t find out until later, is that Chelsea had lived through cancer just a couple years before we met. It’s not something you go throwing around in conversation all the time, but it became one more connection between us after my own diagnosis. Chelsea and Alan have both been there for me through my benefits, surgeries, and recovery, but it was out of genuine friendship, not pity. They stepped into my circle willingly, but I don’t think any of us imagined her own circle coming back to overlap mine.

Until it did.

Anyone will tell you, when cancer comes back, it’s infinitely more frightening than the first time. The stories and statistics all line up, often with tragic endings. Chelsea’s cancer did come back, sort of. Her cancer didn’t grow back…a new one formed, get this, as a reaction to the treatment to eradicate her first. It’s an all too common biological response to cancer treatment. Kill one and facilitate another. That’s what happened to Chelsea.

It started with a pain in her shoulder, that turned into all sorts of tests, into an official diagnosis, troubled by careful treatments that couldn’t be too aggressive as she suffered heart damage from the treatments for her first. She went through various drugs, signed up for clinical trials, and then the symptoms got worse. The scans were not encouraging. And before we could even consider another option, cancer spiraled out of control, taking over her body. One week I was talking to Alan about the next treatment option and days later he was texting me to say she was now entering hospice care. Just like that. The circle had begun choking.

I went for a run in the hot, humid air this morning. A 12 miler with 5 miles getting progressively faster, but my legs felt as weighted by the emotions dragging down my psyche. I pushed through two miles before everything gave up. And yet, I couldn’t stop running. I passed the 5 mile mark, then my turn around at 6, and kept running. I’m not sure why I kept going. Part of me thinks I wanted to run the sadness of my dying friend out of my head. Part of me felt obligated to suffer, in my own way, just a little bit, along side her. Another part needed to keep going…because I can…because she can’t. It was something of a celebration, living a little bit more for her.

Laura and I visited her in the hospital later in the day, and I wish I could say we laughed hard, but she’s having trouble doing anything right now. She’s out of her head on pain meds and surely doesn’t remember we even visited. It’s hard seeing your friend, barely recognizable from the swelling of steroids, in and out of consciousness. It was like seeing my sister again in her last days. They look a great deal alike actually. I can say, however, we did make her laugh, as much as it pained her. I bought her two pairs of socks to replace the hospital socks they give their patients. One pair said, “Fuck this shit.” The other said, “I don’t care. I’m high.” I knew she would like them. They would be the socks I would want if I was in her position. I only wish she was capable of laughing with all the energy she used to give.

I don’t regret surrounding myself within her circle. Even if I had the choice to step out of it, I wouldn’t. She and Alan stepped into mine after all. I only wish we could have pushed it off into the distance again, both of ours, if only for a little bit longer.

With tears falling down her face she told us she was terminal, that she’s so sad because there was so much more she wanted to do. We tried to remind her how much great stuff she has already done, that she did more in her time than most even attempt in their lives. But really, there is never the right thing to say in these situations, no matter how true the sentiment.

I assured her, however, that I ran my miles for her today and that I would continue to run more. As a matter of fact, my benefit run this summer is wholly because of her, and now I owe her every single mile.

I wish Chelsea didn’t have a circle of cancer ringing her life, but I’m glad I was there to step within it and share that space with her. We’re going to miss you Chelsea.

chelsea2

———

When I heard Chelsea was diagnosed again, I needed to help her. She and Alan have been there for me, and as a friend, I wanted to do anything I could to help her manage treatment. While planning the ultra run fundraiser on her behalf, I also linked up with Family Reach in order to spread the benefit into other circles. Without any prompting of my own, Family Reach contacted Chelsea and her social worker to facilitate a grant that helped pay for months of rent and medication that would have been financially crippling otherwise. I am forever indebted to Family Reach for helping alleviate this portion of Chelsea’s burden and I know her family is too. It is with great sadness that Chelsea won’t be here to see me finish this run organized on her behalf, but I’m proud to say the money raised will go to help so many others who find themselves in a situation similar to hers, giving both financial and emotional relief.

Thank you to everyone who has donated so far. I am deeply grateful.

www.stayclassy.org/becausewecanrun

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Hawthorn Half Day Relay

This past Saturday I ran the Hawthorn Half Day Relay. It’s a little unique as far as relay races go, wherein teams are camped out in one location and everyone runs the same 5k loop over and over again, trying to tally the most miles in the 12 hour window. It gets real interesting, and exciting, at the end when the last 30 minutes is transitioned into an 800 meter loop, so all the teams gather and cheer on athletes knocking out 800 after 800 on incredibly compromised legs and lungs. Somehow, even after all the intense, consecutive trail 5ks, runners find a deeper reserve of energy and strength to lay down really fast 800s. It’s definitely a unique, “I can’t believe I’m doing this” kind of experience.

I’ve never been much of a relay runner, preferring intense, measurable, solo efforts to the party atmosphere of relay racing, but, well, cancer has thrown a significant hurdle into my running path and I’m more apt to take on anything I can get these days. I’ve come to really enjoy these efforts, and just appreciate the experience more than trying to gauge fitness or walk away feeling supremely accomplished. With that said, the appreciation I had to be running this specific race was greater than most of my past races as I had a connection to this race through my Personal Best Training teammates.

The summer following my diagnosis, my teammate Jesse Davis entered into the Ultra run category of the race, in part, as a fundraiser for my needs post-surgery. Never having run more than 26.2 miles, he managed to break the course record and complete 77 miles, raising a significant amount of money for me in the process. The same summer, a team formed to support me in spirit, calling themselves The FC (fuck cancer) Crew, winning the event by completing 118 miles in 12 hours.

I can’t underestimate what these two gestures meant to me. It may seem like a bit of lip service, just naming their team after my struggle, but I can assure you the encouraging words and recognition helped push me through darker times of treatment and recovery. On those days where I could have just stayed in bed, opting not to make it to the gym and run, I would be compelled by the many gestures of support by friends and strangers alike, who were putting in efforts of their own for me. The sense of obligation and reciprocation I felt got me out of bed, out of the house and compelled me to push myself to a new state of strength and recovery. Those gestures kept me pushing ahead, finding new levels of fitness, and had me back running and closer to the life I wanted to lead sooner than ever. Sometimes, just a few supportive words are gestures can have a positive effect you never imagined. Who knows, if it wasn’t for the accumulated support over the past two years, I may not have found myself running this race last Saturday. So to actually be out there, running myself, was more important than most probably realized.

Then there was the financial support from Jesse, who received donations and pledges-per-mile (I wonder how many people regretted doing that!) on my behalf, and even offered incentives for breaking the course record, which he did. On a personal level, I wish I could have been there to watch, but I was deep into recovery and treatment and was not able to make it to the race. Being out there this year, however, suffering a bit myself, and then watching the ultra runners keep going and going and going really brought home the degree of sacrifice and suffering he endured to reach his own personal achievement, but to also aid me in the process. I am wordlessly grateful for his literal endurance.

The benefit of the finances he raised through this effort were immeasurably important to me all the same. In concert with all the other fundraising and financial support offered to me during this time, I was able to maintain the stability of my life as it was prior to diagnosis. I could pay my rent, keep the utilities on, buy good food, and parent my son when he was with me. I was also able to concentrate on getting stronger and recovering well while I was unable to work. The emotional comfort of knowing that your only responsibility is to keep living and living well, while all the potentially disastrous economic obligations have been taken care of, can’t be understated.

I don’t want this to sound like I was taking an extended vacation. Believe me, no matter how good things may be, chemo is no beach resort. I actually did try to get back to working while going through treatment, but the ravages of surgery on my body were just too much. I accepted a couple jobs, only to back out at the last second when my body let me know it was too early. I truly couldn’t work. As someone who takes their self-reliance seriously, being helpless to provide for myself in some way did not feel good at all. Fortunately, the financial donations from Jesse’s ultra run and all the other benefits allowed me to continue waiting out my recovery and building my strength to a point that I could get back to work without issue…mostly.

But…here I am. I’m working (self-employed as a graphic designer and distance running coach…which is perfect for future surgery and treatment)….and running. I don’t have the speed that I did prior to diagnosis (still searching!), but I officially have the endurance. I’m knocking out 90 mile weeks and hitting 20+ mile long runs…and running consecutive 5k loops during relay races. And I dare say I might not be at this point if it wasn’t for the gestures of teammates in both word and financial action.

The same as those 5k loops during the Half Day Relay, things have come full circle, as I’m now able to use my strength and abilities for the benefit of others during my Because We Can ultra run down the state of Indiana. I feel a great responsibility to use every able moment I have for the benefit of others and this run is, personally, a gesture of reciprocation for all those that helped me in the past. During my training runs lately, especially as the heat and humidity has risen, I’ve drawn from the inspiration of those who will benefit from the money raised in the coming months, but also from the recognition of what others have gone through on my behalf. I know what it is to suffer and endure, so for others to do that for my sake is forever humbling, and it would only feels right to use my current strength for the same selfless purposes. Right now, all this drives me towards August 23rd when I’ll begin my run down the state for Family Reach and the patients and families they serve. Even if part of this run is, admittedly, for myself, the greatest impetus has been by those that have helped me in the past and for those who it will help in the future.

I ran the Hawthorn Half Day Relay this past weekend because it sounded like an exciting (and absurd) running experience…just how I like it. And although every run is a victory now, and I never forget the importance and appreciation I have for each effort, I was caught off guard by how much the experience would resonate with me due to the efforts of my teammates in previous years. I only hope I can reciprocate the appreciation for others all the same.

Thanks for everything friends.

Perspective

Hey friends…I want to introduce you to someone.

Dylan B.

This is Dylan. He’s 11 years old and was diagnosed with mixed phenotypic Leukemia in March of 2013, one month before I was diagnosed with my cancer. Personally, the last couple of years have been some of the most rewarding for me, but also the most difficult, however, to hear what Dylan has gone through since diagnosis makes my struggles pale in comparison. And yet, his mother says his excitement for living has only deepened.

Dylan is being treated for his leukemia at the University of Chicago’s Comer Children’s Hospital and lives at home in East Chicago, Indiana with his mom, dad and two siblings. His mom and dad are both disabled and their family has very low income. Cancer treatment has made it close to impossible for this family to make ends meet.

Dylan had a lengthy treatment course including chemotherapy and matched sibling bone marrow transplant in June of 2013. Unfortunately, Dylan had multiple complications before and after his transplant including a severe allergic reaction, resulting in altered mental status and ultimately complete loss of vision in both eyes.

Dylan’s social worker at Comer Children’s Hospital brought their story to the attention of Family Reach when the family was significantly behind on their rent and in desperate need of car repair. Their social worker reported that Dylan missed several appointments due to the family having an unreliable vehicle. Family Reach immediately provided a grant to cover several months rent, to help this family get back on track. With Family Reach assistance, the family was also able to afford the repairs for their car.

Dylan also developed autoimmune hemolytic anemia which requires frequent clinic visits. Dylan has regular follow-up visits with oncology, ophthalmology, endocrinology, and pulmonology at Comer. His mother Patricia stays at home with Dylan and his siblings and provides home-schooling. His father works as a laborer but is often needed for care giving due to Dylan’s follow-up schedule. Now that Dylan’s follow-up care is decreasing, his father is able to devote more time to employment.

This month I will be meeting Dylan personally, to help spread his story, to be inspired by his example to complete my fundraiser and run, and to showcase the crucial work Family Reach achieves for so many people in need. Sometimes it’s hard to understand the value of a small donation, and sometimes the effect of your contribution seems to disappear the moment you hit the “send” button, but I wouldn’t ask for help if I didn’t believe in the work of Family Reach and if I didn’t understand what these dollars can mean to a family facing the unbelievable financial burden of cancer treatment.

I’m working with Dylan because he is an example of the effect of your donations, of how your extra funds can keep a family from sliding into a well of debt they can’t climb out of. Your donations allow families and patients to keep their cars running in order to get them to life saving treatments, to help keep the water running in their houses, to pay the rent that keeps a roof over their heads, and to simply alleviate the emotional stress of wondering if they’ll be able to pay all the bills each month. We can all understand how comforting it is to know we are somewhat financially secure and you are offering the same comfort to those who find themselves in unavoidably difficult circumstances due to no fault of their own.

This August i’m going to be running down the state to highlight the work of Family Reach, to raise funds for the families they serve, and guided by the encouragement of Dylan for all 7 days and all 350 miles of the trek. He says he’s even looking forward to running with me when we meet!

Please consider spreading the goal of my fundraiser or contributing yourself if you can. All contributions during the month of June get you entered into a drawing for one of four autographed John Green books. If you’re a cat lover, you can order one of the shirts I created for this fundraiser (see previous post), of which every penny goes to Family Reach. Thanks for helping Family Reach, for helping Dylan and his family, and for helping all the families who will face the burdens of cancer to come.

Because We Can Fundraiser
Family Reach