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
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.
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.
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.
Bald (bôld)
Adjective
1 having a scalp wholly or partly lacking hair
I’ve been told that when people don’t lose their hair during chemotherapy, they worry that the drugs aren’t doing their job. I’ve got nothing to worry about.
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.
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.
Yep. No Vacancy. We arrived at 8am this morning to check in. I had three days and nights worth of sexy, yet comfortable hospital fashion and boredom stalling, computer accessories packed. My hands were full. My eyes were wide. And that’s when they told us there would be a 3–5 hour wait for our table.
“Excuse me, what’s that?”
Apparently, air traffic control tried to slide a few too many sickies into the pattern last night. Wouldn’t it work better to inform patients while they are still at home drooling in their own beds, than send out a team of customer service reps once they’ve arrived?
I thought this is how Comcast operated, not Northwestern Hospital.
Yet another day wasted.
And then I mutter, “Ohhhh, I’m gonna Yelp about this. Or maybe I’ll fill out a customer service card. Nice. Better yet, I’ll write a letter. And I’ll take down someone’s name! Yes! And then I’ll ask for their supervisor! I’ll demand a coupon for ½ off my next chemo! Or maybe…maybe I’ll just go home and wait… Unless! Unless I wait it out. Beat them at their own game. Then, maybe my complaint will be grand enough, that Aura and I can get upgraded for free to the Northwestern Valentine Suite! That’s the room where they put pink and red food-coloring in your IV drip, and your nurse dresses up like Cupid.”
A cancer patient can dream, can’t he?
Instead, I demanded a free parking voucher. And I got it. I won. I freaking won.
What is Love? Baby don’t hurt me, don’t hurt me…no more.
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.
