May 2012
10 posts
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Becoming More Brettish
I want to share a recent email exchange with a friend.
This is his note to me after receiving the news that ICE chemotherapy did not work, but that I was approved for Adcetris (the brand name for SGN-35). It is followed by my response.
Bret, This is good news. I’ll take it. The more I hear you talk and the more I read about what it means to fight cancer, the more I realize how true it must...
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Beating the Odds to Become a Cub →
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SGN-35, Round Three
The chemo dream-o continues.
I’m being made a fool. I swear. Duped. Placebo’d. This is some sort of racket. My nurses…nothing but two-bit hustlers. My oncologist, Dr. Winter, their unscrupulous Godmother, Don Vito Winter.
SGN-35 is a fraud.
It has to be.
The greatest reality, and trick of chemotherapy, is how it breaks you down to build you back up. We all know that. It’s a bully hiding a big...
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Spiritual Crowdsourcing
A friend of mine, Chelsea, just forwarded this message from her friend, Hun.
“I’m at the Cathedral of Notre Dame in Strasbourg. I lit one of these candles for your friend with the Hoechemo blog. I hope it works!”
It sent shivers through my body that I awkwardly tried to focus on my mediastinal mass.
Again, I am humbled.
Thank you, Hun.
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"Remission (Remix)"
–This will mean a lot more to those familiar with the intrepid R. Kelly…apologies to everyone else
“Remission (Remix)”
Now, um, usually I don’t do this but uh…. Go head’ on break’em off wit a lil’ preview of the remix….
No I’m not tryin to be rude
But ABVD I’m feelin’ you
The way you cure the things you do
Remind me of my precious youth
That’s why I’m...
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SGN-35, Round Two
I promised myself when I started this blog that I would never apologize for not writing on it. That to apologize would be antithetical to what I am trying to do therapeutically by writing it in the first place.
Guilt comes anyway.
Instead of apologizing, I would like to thank you all for following my progress so diligently. For caring. For walking with me. For continuing to send letters, calls,...
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Throat Cancer Bests Beastie Boys' Adam Yauch at 47 →
April 2012
8 posts
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SGN-35 Has a Celebrity!
Shouldn’t every drug?
And…he’s beautiful to boot!
Thanks to Jonny Imerman, founder of ImermanAngels.org, I just became aware of Ethan Zohn—Hodgkin’s patient, cancer activist, former professional soccer player and Survivor winner—and his long battle with Hodgkin’s. Check out his story in Forbes. Earlier this year, Ethan received the same treatment (SGN-35) as...
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Woody and Guthrie Play Catch →
How was your day?
Woody: Oh, y’know, Pretty cool, I guess. I did go into remission. So that was neat. Oh…and I played catch with a major league pitcher b/c I’m on twitter. So there was that.
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I Can Write a Short Blog Post
Dedicated to Aura Brickler
SGN-35 dose one. Magic Bullet. Infused. Mediastinal Mass Madness! Liquid Benedryl. Zzz. Aura designated driver. Very little nausea. More Zzz. Gone now. They say cold and flu like symptoms. I say no.
Yes!!!! If it works, if it works…
Life goes on.
Coordinating. Conferences. Car shopping. Concerns about long-term disability. Colliding.
Life doesn’t care.
Impossible to make...
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Waiting for Answers
Is the worst. That was yesterday. I called Northwestern six times. And I waited. I fiddled. Fussed. Then I gave up. Aura and I left the house for a walk. We talked of patience. Then, in the middle of a crowd, the call came in. Amused, I awkwardly ran/walked to an alley. I put my dangerous hoodie up to shield the wind, and answered the call. Surrounded by dumpsters, and followed closely by Aura, I...
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Some Personal News, Part Four
I am getting very anxious to send you an update with unexpected good news. Unfortunately, I won’t be doing that anytime soon. ICE chemotherapy did not work. If anything my disease has grown slightly. My cancer is as stubborn as I am. And so I insist that I’m not going anywhere. Cancer will have to.
Platitudes aside, I really don’t know what this means for my prognosis. To summarize Aura, it feels...
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Watch
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Life Interrupted: Facing Cancer In Your Twenties →
by Sulieka Jaouad
an excerpt:
Young adults might just be oncology’s “tweens” — too old for the pediatric cancer floor but equally out of place in an adult oncology unit. I’m not suggesting that it’s worse to be young and sick, but rather that young adults with cancer are a less visible demographic, swept up in the mix of adult cancer statistics.
Read more at http://secretsofcancerhood.com/
March 2012
6 posts
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New Food and Medicine Calendar
Just below the Hoechemo header there, you will find a link to a new calendar of medicine and food.
In it I do all the receiving. I get medicine, and when I get medicine I might need your food as well. Aura too. We’ve made it thus far on the generosity of random friends, but with stem cell harvest, radiation, and stem cell transplant approaching, we thought it might be helpful to scrounge...
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Slappin' da bass...moments after being unplugged...
Home (thanks to a ride from my wonderful cousin, Janelle Flikkema) and feeling ok so far. We are now officially 1/3 of the way through stage two. ICE has been melted. No surprises during treatment, besides the giant double episode of hiccups last night. Now, I’m off for acupuncture—my nausea-fighting wonder treatment. If only insurance companies would recognize this.
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ICE, Round Three
After blood delays (low counts on Friday), and more Northwestern delays (no room on Monday), I’m finally in for my third and final round of ICE. And I got the baller suite. Pure swag. The past two sentences have been written in honor of my brother-in-law, Aris, the original baller.
I feel so exposed. Anyone could see me get my chemo…
So, I’ll be cold chillin’ in Prentice til noon on Thursday. If...
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Keepin' It Fudd
Bald (bôld)
Adjective
1 having a scalp wholly or partly lacking hair
I’ve been told that when people don’t lose their hair during chemotherapy, they worry that the drugs aren’t doing their job. I’ve got nothing to worry about.
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“I have no idea how this happened
All of my maps have been overthrown...”
– You Are My Face by Wilco
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Winter Delays Harvest
Turns out I’ve been pretty busy this week for a man who isn’t working. I’ve been meaning to write something thoughtful for the past four days. In lieu of thoughtfulness, I’ll at least post my upcoming medical calendar.
The good news is that I’ve been completely without nausea and feeling pretty great since last Saturday. I’ve been sleeping as much as my mind allows, eating well—at home, juicing,...
February 2012
7 posts
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ICE, Round Two
After a bit of delay, waiting for my platelet count to be sufficient for clotting and for Northwestern to de-clot their booking…again, I’m back in the hospital for treatment two. Must have had some honeymooners in from Iowa. Thankfully, the delay wasn’t a problem, because I received a tip to call ahead. I’m very thankful for tip givers.
My counts bounced back well enough to get me here for round...
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Northwestern Memorial Hospital: No Vacancy
Yep. No Vacancy. We arrived at 8am this morning to check in. I had three days and nights worth of sexy, yet comfortable hospital fashion and boredom stalling, computer accessories packed. My hands were full. My eyes were wide. And that’s when they told us there would be a 3–5 hour wait for our table.
“Excuse me, what’s that?”
Apparently, air traffic control tried to slide a few too many sickies...
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ICE, ICE, Baby
As of now, I am on medical leave from Cultivate Studios. I just got home from mumbling some goodbyes to all my coworkers. I hated every second of it. I had expected to take time tomorrow—by my lonesome—to get pissed and emotional, but instead I felt like shit all day long. I didn’t see it coming. And I couldn’t stop it.
Here’s the USA Today version of what’s happening next…
Tomorrow morning,...
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“A ledge of ice slides from the eaves,
piercing the crusted drift. Astonishing...”
– Excerpt from the poem “Bright Sun after Heavy Snow” by Jane Kenyon
January 2012
11 posts
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The Blight Has a Name
It’s Hodgkins. Or perhaps it’s Hodgkagains…
Can’t say I’m surprised. Maybe a stitch relieved that it’s not something worse. Pissed that it’s not something better. I’ll send more word on my treatment regimen when I get a chance, but the basics are the same as I described. I’ll be starting ICE chemotherapy as soon as I can line it up. Time to double down. Transplant a garden,...
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$1 Pays Someone's Medical Bills →
Philanthroper.com is a “daily deal” site for giving instead of receiving. Today they are featuring, Sink or Swim Philadelphia, an organization that helps people pay for medical bills. That’s a groupon, you can’t poop on…
If you’ve never heard of philanthroper, sign up for their emails. It’s a great way to find a cause you can get behind—before you have a...
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Biopsied.
Today’s operation was a success. According to the pathologist they were able to remove three viable samples for biopsy via ultrasound-guided needle. I should receive results in 2-5 days, and I have an appointment with my oncologist, Dr. Winter, on Monday to go over the results.
No alarms and no surprises. Please…
The process was virtually painless. More painless than getting a bad...
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Let’s Biopsy!
Let’s name the demon. Or tormentor. Or enemy combatant. Or lymphatic terrorist. Pick your preferred, overly dramatic military or spiritual metaphor, gird your loins, man your battle stations and join me. It’s biopsy time!
Tomorrow morning, at 0630, I will take Interventional Radiology at Northwestern University by storm. Apparently, I will be handling logistics—read filling out medical history...
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Some Personal News, Part Three
Hello Friends and Family,
I’m going to cut to the chase. Yesterday, my unexpectedly smooth journey with Hodgkin’s Lymphoma took a wrong turn. I received the results of my post-chemo PET Scan, and in spite of the fact that I received a negative PET two cycles into treatment, this PET shows new activity in my anterior mediastinum—the bulky mass of lymph nodes around my left lung that was the reason...
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The Onion—Man With Hodgkin's Disease Way Over... →
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Radiation Preparation
Jan 16–PET Scan at Northwestern
Jan 19–Follow up with Oncologist, Dr. Winter
Jan 19–Follow up with proposed Radiation Oncologist, Dr. Mittal
Jan 23–2nd opinion at University of Chicago
Jan 24–3rd opinion at Cancer Treatment Centers of America in Zion, IL
Jan 26–who knows…
Feb 2–Groundhog Day
I know there is no legitimate excuse, but it’s been incredibly hard to find the time or energy to properly...
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I Ain't Missing You At All
Yesterday, was a chemotherapy day. Except that it wasn’t, because I’m finished with chemotherapy.
I ain’t missing you at all.
Take it away, Tina…
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Scenes From a Paper Towel Dispenser
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Hoechemo No Mo: Top Ten Things I Won’t Miss About...
10. I will not miss—a veritable top ten list itself—Acyclovir, Lovefloxacin, Fluconazole, Allopurinal, Hydroxazine, Senna S, Ondansetron, Prochlorperazine, Lorazepam and Trazadone. Correction, I will occasionally pine for Lorazepam and Trazadone.
9. I will not miss when poop takes a seemingly permanent vacation in my intestines, or when it suddenly gets sick of vacation and turns the sleepy...
December 2011
7 posts
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ABVD Chemotherapy: Cycle 6, Dose 2
Today I receive my final dose of chemotherapy. Wherever you are, raise a glass for me. May it truly be the last. And on to radiation…
Ooooo B-B-B-B-Baby, you ain’t seen nothin’ yet. Dun. Dun.
I know I ain’t seen nothin’ yet…
Weighing My Options
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Meat and Potatoes and Radiation Vibe. With a...
Let’s keep it to the essentials today. Enough fluff.
Treatment 11 of 12 is tomorrow.
I’m feeling pretty well. A bit tired.
Only one pill and no antibiotic this week! My neutrophils are up.
My hands are a bit swell-y and neuropathy-y.
After treatment, I’ll methodically eat lentil soup to help things pass like the I-Pass express lane—a joke for the Illinois crowd.
At which point I’ll shave my...
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To The Present!
One year ago, I was favored to marry Aura Brickler. Today, I am still amazed. By her. By love. By life. In anticipation of today, I stopped for a moment to look back at our wedding day. As I marinated on the moments, I remembered being frustrated by wedding planning as much as I enjoyed it. Oops.
There is, however, one element of planning a wedding that is fantastic. If you can keep it together as...
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Generosity—A Note From Aura
As a school social worker I have the honor of working with young people through some of their toughest times. Although it can be rewarding, it also has its challenges. Words like abuse, neglect and abandonment are commonplace. I often find myself confused and deeply saddened by the actions of others. It sometimes seems as if humanity is unbalanced, and the infliction of hurt and pain overpower...
November 2011
1 post
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Imagine The Deafening Hallelujah
There has been much tragedy in my life; at least half of it actually happened.
—Mark Twain
The formula is simple enough. If you get sick, choose the best care you can afford. If you get sick, and you happen to work for a company with a good health care plan, and by dumb luck you chose the high deductible PPO plan that covers almost everything 100% after said deductible (nice, right?), choose the...