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!
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.
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, drinking green tea, dropping coffee and alcohol, exercising, reading, home improving, and generally becoming the sort of philosopher only one who doesn’t work can become.
I was originally supposed to get my stem cells harvested prior to my third cycle, but do to scheduling snafus and waiting on insurance, Dr. Winter decided to postpone until after this cycle, in an effort to keep things moving.
Here’s the upcoming details:
March 9 Blood Work (determines whether I can be admitted, mainly WBC and Platelets, I think)
March 11-13 ICE Cycle Three
March 24 8pm CST, self-administered shots of Neupogen for Stem Cell Harvest (This spurs stem cell growth in my bone marrow enough to spill stem cells into my circulatory system)
March 26 Stem Cell Harvest (lasts 2–3 days, looking for 10 million stems)
April 2 PET SCAN
April 2 (week of)
–Bone Marrow Biopsy
–PET Review with Dr. Winter
–Radiation planning with Dr. Bharat Mittal
April 9 (week of) Total Lymphode Irradiation (2x per day)
April 16 (week of) Total Lymphode Irradiation (2x per day)
Apr 23 follow up with Dr Winter
Apr 30-May 20 or so, Inpatient for BEAM Chemotherapy and Stem Cell Transplant.
May 29 Aura and I celebrate our engagement, which took place in Cancer Survivor’s Park. No joke. It better be true.
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, where there is blight.
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 I was slated to receive radiation, and not chemotherapy alone. The new activity is most likely to be resistant Hodgkin’s (same kind or a mutated subtype), but it could be anything—a demon I know or a stranger, but definitely a demon. Said demon will be needle biopsied within the next week for a name.
Saying that I’m pissed, doesn’t quite capture it. It’s a punch to the throat. My prognosis is still most likely good, but for the moment that is quite beside the point. I had no idea this was even a possibility. Lately, Aura and I have been enjoying the planning of a cancer free 2012, but life seems to have a way of sticking it to the overly confident.
In talking with my oncologist, we did not review all of the possibilities beyond Hodgkin’s. However, we did go over the treatment protocol if it is Hodgkin’s. The best news is that the new activity is very localized—I believe in the lymphatic system around my left lung. If I stay at Northwestern, which I am very, very likely to do, I will be receiving three rounds of ICE Chemotherapy, followed by radiation, followed by stem cell transplant. ICE isn’t necessarily harder to deal with than the ABVD I have already handled, but Stem Cell will be a challenge. I really don’t know the details, but I know that I would be taking a bed at the hospital for a little over two weeks.
So yeah, it’s time to learn how to knit. And it’s time to regain my balance—maybe after the weekend. I will, of course…my expectations will be high.
