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.
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.
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 two in sixteen days. I guess the average is nineteen. I’ll take credit for that. Must have been my incredible diet. Or perhaps it was my ability to keep stress at bay—even with a visit from my parents. If anything, I received an emotional boost from the visit of my parents, to go with the physical boost I received for my WBC from a shot of Neulasta. I receive a shot of said drug in my tummy the day treatment is over. Seems like I’m here every other day for one reason or another. I know way too many names…
So that’s it. I’m here. And bracing.
Feel free to stop by tonight or tomorrow. No visiting hours on the cancer floor. Just give me or Aura a shout. I’m on the 16th floor of Northwestern’s Prentice Women’s Hospital at 250 E Superior.
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, I’ll be getting my lungs (Pulmonary Function Test) and heart (MUGA Scan) tested to make sure I’m ready for round two.
I will be going inpatient at Northwestern for my first treatment of ICE chemotherapy on Thursday morning at 8am. I should return home some time on Saturday. I will then return to get a Nuelasta shot on Monday. It will boost the ICEd over immune system.
It will take approximately 14-19 days for my body to recover for the next cycle. I will receive three iCycles. This should be sufficient enough to melt the Hodgkin’s. After iCycle two, I will get a bone marrow biopsy and they will extract my stem cells for transplant. After iCycle three, I will rest up and get a PET scan to measure treatment success. This will be followed by two weeks of Total Lymphode Irradiation. I don’t know a lot about that.
The final chapter will be the most extended indoor stay of my life—by far. I will receive a different, as yet to be explained to me, chemotherapy treatment for six days or so, followed by an approximately ten day rest period, followed by the return of my stem cells. Followed by the return of Bret. Followed by a rainbow—a promise I wouldn’t mind finding in the sky in June.
As for my medical leave from Cultivate, I’ll still be doing some behind-the-scenes work as I am able. The important thing is that if I experience any work related stress, it will be my own fault. I’m very thankful that I work for a company that can make this possible. Besides the actual treatment, I see this leave as the most important factor in being able to return to health.
And finally, this is a rough, rough timeline I sketched out of my treatment calendar…
(Put -ish by all of these…)
Feb–April 16 ICE Chemotherapy
April 16 PET Scan, Radiation Planning
April 30–May 11 Total Lymphoid Irradiation
Possible Break???
May 14–June 1 Inpatient Chemo and Stem Cell Transplant
Hopefully my eyebrows will return in time for Independence Day celebrations…
ICE, ICE, baby,
Too Cold.
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.
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 they already have on file on the lower concourse, 8th floor and 21st floor—for an hour and a half. My appointment isn’t until 0800. Not sure what their tactical strategy is with that one. It blows my mind how terrible medical institutions are at taking our medical records online. Even the best institutions have dial-up era technology. So like a 20-year-old version of myself with a free Net Zero connection, I will struggle through the morning.
The operation should take about an hour to complete, and I will be resting at the hospital for an additional hour. So I guess that means I’ll be back in my foxhole by around 1400. It’s weird math, but I’m pretty sure I’m right.
This past weekend has been tough. I have been mostly stable since Thursday night. I’ve done my best to relax, but I’m not sure how to take my mind off of something I feel it should be on. I want to thank the many wonderful friends and family members who have taken the time to write thoughtful messages of encouragement, and those that have just thought out messages of encouragement. I need it all.
I should be receiving the results in 48–72 hours.
Let’s biopsy.
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.
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 research radiation possibilities. Not to mention that Google is actually a really shoddy way to research. But I’m making progress. I’ve come to the conclusion—still waiting to come to peace—that I will not be able to avoid radiation. I just haven’t found any good evidence of the existence of anyone with my exact diagnosis saying no to radiation.
New goals:
–Work with the best radiation oncologists.
–Make the best compare notes and be collegial.
–Get out of the way.
–Live Life/Try not to think about it…
Now, if I only knew who the best were…
As I said, I’m making progress. 2nd and 3rd opinions have been scheduled. I’ve also joined www.imermanangels.org and www.planetcancer.org and www.stupidcancer.com—the best of what I’ve found for young adult cancer support. Young adult…I still think this is a funny term. Like Preteen. I hope to use these organizations to connect with people with my same diagnosis—Hodgkin’s Stage IIb Bulky Disease. In fact, I will be posting this entry on their forums. Imerman is already paying dividends thanks to my new angel, Christine. I also plan to circumvent the randomness of a Google search by working with the librarian at Northwestern over the next week.
I still need help…
I’m currently very interested in the different kinds of radiation therapy that are available. Especially…
IMRT–Intensity-Modulated Radiation Therapy (I think Northwestern and U of Chicago offer this)
IGRT–Image-Guided Radiation Therapy (New Kid on the Block, available at CTCofA)
I’m not sure which is most common or most effective for fighting my disease.
Anyway, that’s my world. Anyone got anything to offer it?
Thanks to all who have written with their thoughts, or offered to research…
