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.
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.
