Hoechemo

Or…Becoming More Brettish, Part Two

Tue, 29 May 2012 14:55:33 -0500

Or…Becoming More Brettish, Part Two

Becoming More Brettish

Tue, 29 May 2012 14:47:34 -0500

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 be that it is a life-changing experience…one in which you don’t go back, you only go forward. It is interesting that mixed in with the fear and distress I feel on hearing of your physical pain and struggle, I also see and hear about the transformative experience that this is. While in a sense it separates you from us (those who love and care about you but who cannot empathize with your journey), it also draws us in - to a limited extent - to a greater understanding of those who do battle. I guess what I’m saying is that I know what you are going through is making you into a better person…or a better way to say it might be that it is making you more fully you…more Brettish. And I am privileged to be your friend as you go through this process, and I hope I can rise to the occasion and learn something about life and struggle and journey from you. So as you become a fuller version of yourself through this process, I will promise to move forward with you and to do my best to learn to appreciate what you will bring to the table in our friendship in years to come…to embrace the new and refined you rather than hoping for a carefree and idealized past where we can pretend struggles are something the folks across town have to deal with.

To mix CB radio lingo with 90s rap lingo…peace out good buddy,

-Frank

Frank,

I’ve received a lot of emails, notes, cards, and well wishes over the past year, and for that I am thankful. But I’ve been particularly anxious to say thank you for this note. Empathetic. Friendly. Thoughtful. Insightful. Just as I’ve always known you to be. It’s a top-fiver for sure. People ask what they can do to help when they live out of town, and this is a pretty tasty example. Thank you.

Interestingly, I recently spoke on the phone to our friend Paul for the first time in a hot minute. We were discussing life with Hodgkin’s and recent goings on in his life. The questions were/are…When life takes a big shit on you, is it a learning experience? Does it change you? Or do you fight the change because it is seemingly being forced on you— butt up against it with all you’ve got? You might guess what he chooses. Or at least says he chooses. That’s Paul on the surface—in the phone call performance we love. I respond by admitting that I want to be changed by this. I want to listen and learn. To be measured, not spilling. I say I am somewhat predisposed away from conflict—at least of this nature. On my surface, I want this to make me a different person. It feels necessary.

Beneath my surface, away from emails and blogs and my preternatural need to say and feel the right thing, at home, in my head, in my guts, I recognize so much stubbornness, so much dogged determination not to change, that it makes me sick. Fills me with dread for my future.

On the surface, I say to Paul, “well…Paul, that’s so nice of you to make vivid for me how lovely it is that I know how to change and roll with the punches, but if you were backed in a corner you would do the same. By force, you change.” A statement designed to deflect praise and simultaneously bask in it. But after we hung up, the conversation made vivid for me something else. Even when I have a very clear picture of something bad in my not to distant future, change can feel damned near impossible.

Sick, right? We know change is necessary, but we don’t know what change is necessary. Or if we do, we refuse to change it anyway. When we were college-enrolled, intellectual hacks (besides you), we distrusted adults for exactly what we are starting to admit we are capable of as well. And it’s actually not, I’m realizing, not changing. Change is easy. People we look down on change jobs, towns, spouses and so forth all the time. Rather, it’s not growing. Not…evolving. We were growing then. We were evolving faster than we could grow beards (again, besides you). We believed when we were adults we would live better than our parents. We would look in our backyards, and find the fruits of a life well invested—if we even wanted backyards—not a giant, growing pile of regret, self-doubt and ghosts.

I don’t want to butt up against this disease, but I can’t seem to help it. I want, as you say, to move forward. Become fuller. More refined.

Man, do I want to be more Brettish.

Isn’t it interesting that even though they don’t know why people get Hodgkin’s Lymphoma, I still manage to feel guilty for having it?

Truth is, I can go backwards.

But it’s springtime. And I read your words. I feel your promise. I share food and stories with family and friends. Hold hands with my wife. Feel the cool, refreshing breeze of the night. Take a deep and less painful breath. And I believe that I am changing. Um…growing. Guilt-lifting. Ghost-busting. Hodgkin’s-defying. This is life-changing after all, and it is possible for me to know what change is necessary. I am more Brettish.

Thanks for thinking of me.

Sincerely,

Bret

Beating the Odds to Become a Cub

Mon, 28 May 2012 15:38:44 -0500

Beating the Odds to Become a Cub

It’s Friday, let’s keep it fun and come out...

Fri, 25 May 2012 14:05:11 -0500

It’s Friday, let’s keep it fun and come out fighting. Please enjoy as the hemoncology floor of Seattle Children’s Hospital performs Kelly Clarkson’s “Stronger”

SGN-35, Round Three

Thu, 24 May 2012 02:29:40 -0500

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 heart. An army general shedding a civilian to solder a soldier. A schoolmarm handing out lashings as lessons. Chemotherapy is old school like that. If you look in the mirror and recognize yourself, it’s not working. Your guts must wrench. Your weight must balloon or vanish. Your hair must clump. Your bowels must knot. Your brains must mush. These aren’t problems. These are just signs that it’s working.

It’s got to be harsh. Garish.

So why does it feel like spring? Why is my scalp sprouting like a garden? Why is my weight equalizing? My skin, colorizing? My brain, organizing? Why is my energy level bordering on annoying? Why can I breathe so deeply? So damned deeply.

I’m being made a fool. This is not chemotherapy. It can’t be.

I know when I’ve been given a pony instead of a bronco. This ain’t my first rodeo. I need a bronco. A bully. A General. A Marm. I need Winter. Not spring.

SGN-35 says cancer treatment is easy. I say, since when? Since when…

Spiritual Crowdsourcing

Tue, 22 May 2012 14:37:00 -0500

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.

Audio

Mon, 21 May 2012 15:00:00 -0500

"Remission (Remix)"

Thu, 10 May 2012 03:52:59 -0500

–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 all up in yo’ bag

Tryin-a get you to my vein

You must be an inpatient nurse

The way you got me doin’ rounds

So baby gimme that drip drip

Lemme give you that puke puke

Takin’ the roots from my ‘fro

Poopin e’ry 2 to 4

While I say on the call button…

It’s the remix to remission

Hot and fresh out the kitsch’n

Chemo destroyin’ my body

There’s one man here who’s wishin’

Sippin’ on a fun straw

I’m like so what I’m drugged

When’s the freakin PET scan baby?

Wonder if remission will come…

Drip Drip Drip Drip Drip Drip Drip

Drip Drip Drip

Now ICE’s like Murder She Wrote

Once you get me in that gown

Privacy is on the door

Still they can hear me screamin more

Nurse I’m feelin what you infusin

No more hopin and wishin

You about to take my pee

And go test its condition.

So baby gimme that drip drip

Lemme give you that puke puke

Takin’ the roots from my ‘fro

Poopin e’ry 2 to 4

While I say on the call button…

This is the remix to remission

Hot and locked in Fowler’s position

Chemo destroyin my body

There’s one man here who’s wishin’

Sippin on a fun straw

I’m like so what I’m drugged

Turns out I’m freakin’ neutropenic

Lord knows if I’ll ever see sun

Just pill poppin with my Nurse Navigator

We got food everywhere

To make the nausea fade later

We got Senna to my left

And Gas-X to my right

We bring em both together we got poopin all night

Then into my body is the antibody

And I’ve got antibody b/c da pharma’ lobby

It’s chemo round 3; still got to pay somebody

Hopin’ their not tryin to just _____ somebody

Can I get a drip drip

Can I get a puke puke

Takin’ the roots from my ‘fro

Poopin e’ry 2 to 4

While I say on the call button…

This is the remix to remission

Hot and almost through dishin’

Chemo destroyin’ my body

Got one man in here wishin’

Sippin’ on a fun straw

I’m like so what I’m drugged

It’s the freakin deep end baby

And I feel like I’m done…

It’s the remix to remission

Hot and still in here bitchin’

Chemo destroyin my body

There’s one man here who’s wishin

Sippin on a fun straw

I’m like so what I’m drugged

When’s the freakin PET Scan baby

Wonder if remission will come…

…

Man, I’m off in the deep

I’ve gotta cowboy up

VinBlastine the radio

Through the port in my neck

Life’s ups and downs

Is R. Kelly for real???

To the remix

We just druggin it out…

SGN-35, Round Two

Sat, 05 May 2012 14:45:00 -0500

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, gifts and texts even though I can only sometimes find the time to return the favor or even offer my thanks. I want to thank you for sharing stories of how this blog has found you. For encouraging me to keep writing. To keep writing already. To get better already. For continuing to help in whatever way you know to fill me with the belief that I’m bigger than this disease. More stubborn. More resilient.

For now, know that I am physically doing as well as I have in many months. SGN-35 is a chemo dream-o. But staying mentally up for this—as my treatment calendar gets longer and longer, and life plans get altered and re-altered—well, let’s just say I wax and wane with my enthusiasm for the long and winding road.

My oncologist has pushed back my next PET Scan until after my third treatment of SGN-35. My brentuxi(map) keeps getting redrawn. And while intellectually I know that doesn’t necessarily mean a longer path to wellness, I couldn’t help but feel a little beaten when I left the hospital. Maybe it caught me off guard.

And then time alone and time with Aura help me to refocus.

Now, it’s the weekend, and I’m going to go enjoy it. No apologies…

Throat Cancer Bests Beastie Boys' Adam Yauch at 47

Fri, 04 May 2012 15:56:00 -0500

Throat Cancer Bests Beastie Boys' Adam Yauch at 47

SGN-35 Has a Celebrity!

Wed, 25 Apr 2012 13:42:00 -0500

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 I’m currently receiving. He should be out of stem cell transplant by now, but I haven’t yet found an article on how he’s progressing.

My best to you, Ethan Zohn. Pave the way!

Woody and Guthrie Play Catch

Wed, 25 Apr 2012 10:23:11 -0500

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.

Audio

Mon, 23 Apr 2012 14:15:00 -0500

I Can Write a Short Blog Post

Wed, 18 Apr 2012 03:00:00 -0500

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 plans for future.

And thankful. Buoyed. So many friends. So many thoughtful friends. So many cooks. Overwhelmed. Over-nourished. Never Over-cooked. I’m over-cooked.

Two weeks to dose two. Mediastinal Revival, Part Deux.

5 weeks to PET.

Anxious. Tired. Where is vacation? Vacation…

Short? Easy.

Questions?

Waiting for Answers

Tue, 10 Apr 2012 15:11:36 -0500

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 received the news. SGN-35 has been approved. Fresh, like an experimint, SGN-35 is LIVE.

As I write this, I’m torn by the cutting edge. It wasn’t excitement I felt when she finally called. Maybe, relief. I have gotten good feedback on the drug. All but one of the top Hodgkin’s doctors she polled, said, “Do it. Drug’m.” Almost a consensus. So yes, I am relieved. But like a kid stuck in the back seat on vacation, the destination seems a long way off, and I’m pretty powerless to do anything about it. And so I respond “Ok.” rather than “Let’s Roll!”

I can feel the difference in the positivity that surrounds me. Friends and family are more apt to say, “I’m at a loss for words.” than “Dude, you’re gonna kick cancer’s ass!” Bible verses and offers to walk by my side are increasing in regularity. And so it goes. For a senseless situation, it all makes sense.

But I’m less pensive than I am business-like. I’m less depressed than I am determined. I’m practical. Hands on. That’s what I need right now. Physically, I feel better than I have in a long time. That helps too. I’m keeping muh-muh-muh-my poker face. I’ll celebrate when it’s gone. If even.

Thursday, at 2:45pm, I start SGN-35. Literature is coming on the side effects. I’ll receive two outpatient treatments, then PET restaging. At which point if it’s working but not finished, I’ll likely get more. If it’s working and finished, well…hell yes. If it’s not working…

Some Personal News, Part Four

Fri, 06 Apr 2012 20:59:10 -0500

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 increasingly pointless to insist that my doctors speculate on a statistic or give us a percentage point to stand on, when all we care about is that lymphoma lets ME be. We are left to rest our hope in the fact that my oncologist, Dr. Winter, maintains great optimism. It seems more and more evident that she is talented and determined, and has access to the latest medical treatments and the best Hodgkin docs in the country.

And so it is that out of necessity, my treatment plan has gone from standard practice to experimentation. While I am not feeling like pioneering, I will go west, ceding the reigns to Dr. Winter. We spoke at length this morning of our next steps. She is very hopeful, as am I, that we will be able to use a new therapy called Brentuximab Vedotin (SGN-35), http://en.wikipedia.org/wiki/Brentuximab_vedotin. It was approved by the FDA on August 19, 2011 (crazy, right? I was well into treatment by that point…), for the treatment of very specific cases of Hodgkin’s Lymphoma. There is gray area as to whether I qualify, and with the cost of new medicine, I need to pre-certify with Blue Cross and Blue Shield in order to proceed. I’ll be talking with Dr. Winter on Monday to go over next steps, and will update the blog with more information as I find the time.

As one who likes to argue, I believe she has a good argument for SGN-35 to be allowed in my treatment. As I understand the drug, it has been shown to target Hodgkin’s cells while leaving healthy cells be. It’s like a teacher that can deal with the class ass, without effecting the education of the rest of the lot. This is very exciting to me. While any new drug has unknown side effects, the potential of SGN-35 is hard to ignore, and as treatments fail for me, I am slightly taken aback by how quickly I will sign up for an experiment. I guess it makes a difference that the experiment is being argued for by my well-respected oncologist, rather than by me, after some late night googling.

We’re digging in our heals. As we rode home from the hospital I was taken by an analogy. Remember that time you were in traffic, and some idiot in a ______ jammed passed your law-abiding ride—freaking out bicyclists, pedestrians, other drivers, and maybe even home owners—only to slam on their breaks at the next red light? Remember when you were still behind them 15 lights later? I’ve been the class ass. I’ve been the idiot. But this time I’m the law-abiding ride, and I’m gonna get there. Stay tuned for unexpected good news.

Video

Tue, 03 Apr 2012 17:06:22 -0500

Life Interrupted: Facing Cancer In Your Twenties

Tue, 03 Apr 2012 17:03:15 -0500

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.

New Food and Medicine Calendar

Sun, 25 Mar 2012 11:39:00 -0500

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 for more and organize the effort. This calendar will help maximize your efforts (avoiding duplicates and waste), and give us a say in the process, as our days can be kind of random and eating in a hospital can create complications.

If you’re interested in helping a couple beggars like us, please write us with the details (bret@cultivatestudios.com or aurabrickler@gmail.com) and we’ll post it to this calendar for others to see.

We do have some super snobby dietary restrictions. I may have cancer, and I may be begging, but I’m still a spoiled yuppie. We’ve been trying to eat healthy and organic whenever possible. Contrary to the fuss I just made, I’m not anal about this, but I’ve been warned about the contaminates in conventional food—especially uncooked food—while my immune system is low.

I eat meat, but not a lot of red meat. Aura is pescetarian, which means she mainly eats vegetarian (including dairy), but enjoys seafood from time to time. I don’t mind eating pescetarian as well, in order to simplify your efforts.

And finally, thank you in advance. We couldn’t do it without you.

Slappin' da bass...moments after being unplugged from it.

Thu, 15 Mar 2012 16:21:00 -0500

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.