flortuga:
Lalalalalaaa
Sending healing vibes to a friend back in Chicago, we love you!
My friends Florencia Rojo and Daniel Yang sent my some illustrated love from Thailand! Florencia is the illustrator, check out her blog! Daniel is the doctor. He’ll probably save your life some day. With music. And hugs.
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.
Philanthroper.com is a “daily deal” site for giving instead of receiving. Today they are featuring, Sink or Swim Philadelphia, an organization that helps people pay for medical bills. That’s a groupon, you can’t poop on…
If you’ve never heard of philanthroper, sign up for their emails. It’s a great way to find a cause you can get behind—before you have a breakdown over your priorities in life and drunkenly Google for a place to volunteer.
Today’s operation was a success. According to the pathologist they were able to remove three viable samples for biopsy via ultrasound-guided needle. I should receive results in 2-5 days, and I have an appointment with my oncologist, Dr. Winter, on Monday to go over the results.
No alarms and no surprises. Please…
The process was virtually painless. More painless than getting a bad phlebotomist. However, my weird math was correct. We returned home after 2pm. I spent the rest of the day organizing medical files. And another day for Aura and I got consumed by Hodgkin’s. It’s like a cancer…seriously.
In other news, I was able to make contact with Northwestern’s Librarian to help me research and prepare for what I will be facing if Hodgkin’s has indeed returned. I’ve traded Google for her. Except that Google is still on my team, it’s just not going to get as much playing time.
Over the past days, I’ve had some time to reflect and prepare myself to increase my self-care for this phase of treatment. Last Thursday made it clear to me, like only a punch to the throat can, that every moment of this is too serious not to. Hopefully life for Aura and I can be redesigned to make that more of a possibility than it has been thus far.
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.
Ok, this is slightly tangential, but I can’t help it. It definitely relates to what has been on my mind…
