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!
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.
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?
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…
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.
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/
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.
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.
