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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 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…

“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 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…

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 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

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.

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/

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 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.

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.

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 anyone wants to drop by, just drop a line. BYOO…Bring Your Own O’Douls. And your disco ball if its handy.