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Lymphoma and Pets
I’m sure everyone lives their days following receiving traumatic news a little differently than their ordinary days. For me it’s been a combination of research, crying, e-mailing, sleeping, reading scientific studies, reading gothic novels, watching violent TV shows, more crying, more reading, more corresponding, more research, and perfecting my drug dealer voice: “Slinging ICE on the streets, yo!”
What does this all mean? It’s been my survival pattern as I’ve eased down from the initial shock of my surprising scan results and moved from “What the F?” to “Holy F’in S” to “S just got real and I’ve got to get it together.”
No, I’m not slinging ICE nor cooking glass, but oddly as it sounds Craig and I have gotten totally swallowed up by the AMC show Breaking Bad. We started with Season I on Netflix and the drama of watching a high school chemistry teacher get wrapped up in cooking and selling Crystal Meth to pay his medical bills and provide for his family, while dealing with inoperable lung cancer has been the perfect distraction. It’s an incredibly written show.
At least I don’t have to dissolve dead bodies or walk around a grocery store naked to get myself hospitalized so my wife won’t wonder where I was (which was dodging bullets from a drug lord in the desert). This is what I mean when I say I’ve been practicing my punk dealer voice. It makes Craig and me laugh when we pretend to be badasses and the show totally engrosses us. Way better than thinking about our own crap.
It was raining for three days straight. The weather shared in my misery. The dreary darkness certainly didn’t do anything for my spirits. It’s been difficult motivating myself to get out of bed each morning and for a few days there was difficult to even speak without my lips quivering and the tears starting to fall.
I’m suddenly very achy and very tired. My mid-back and lower back are sore and angry and the muscles in my neck and shoulders are in knots. I’m pretty sure that it’s more stress related than cancer related – the fatigue especially. Taking this all in is just exhausting.
I did get myself out of the house to the town library where I brought a totally transporting book we’re reading for book club and a pumpkin spice latté (soy, no whip). I cuddled into a comfy chair and ottoman by the window and watched the rain tousle around the dried, colored leaves and just read – for several hours – until I finished. It was glorious.
After putting some feelers out to the medical world I’m exhausted further, but I’ve got some good leads for possible treatment options to explore. Things are cooking:
- I landed an appointment on Monday with the famed “Dr. O” (Owen O’Connor at Columbia in NYC) and am eager to hear what he thinks may be an optimal treatment plan. He is always buzzed about in the Hodgkin world for his expertise in novel treatments for refractory patients. I saw him last spring and am eager to reconnect.
- I also have connected with some doctors at the National Cancer Institute in Maryland through a friend, and they are exploring my eligibility for a possible clinical trial there that involves radiation and a DLI which I’m very interested in.
- Dr. Moskowitz talked to Dr. Anas Younes at MD Anderson for me (another big wig in the Hodgkin world) and he has a trial in Texas for me but also agreed with trying the Phase I trial of PU-H171 at Sloan-Kettering, which I’m slated for initial consult on in three weeks.
- A research doctor at Seattle Genetics (the makers of SGN-35) – whom I connected with a couple months back through the help of my buddy Ethan Zohn to talk about my lung issues as an SGN-35 complication – is now looking at my current status with his team to see if they can come up with anything.
- I’ve received lots of e-mails with offers for referrals, advice on treatments, and links to clinical trials. For that I am so grateful and am still working on weeding through it all.
More importantly than all the medical leads was the outpouring of e-mails, blog comments, and Facebook messages I’ve received since Monday that filled the hole in my soul. I am so grateful for the kindness of my friends – close and distant – and from the perfect strangers who took the time to tell me how much they’re rooting for me and how much my story has meant to them. It’s messages like those that keep me moving forward. Sure, many of the heartfelt e-mails I got added to the water works, but they were sentimental tears, not tears of defeat.
Today the sun came out and I finally gave in and let my mom and sister come take me out for lunch and a hike. We took Sam to her favorite place: Nod Brook Wildlife Conservation Area and enjoyed a nice walk in the unseasonably warm weather taking in the foliage of Talcott Mountain in the distance.
The tears are less frequent and I’m starting to smile again. Craig and I laughed a lot last night scaring each other with fake finger guns and making up stories about how the dilapidated blight-of-a-house on the end of our street is most definitely a meth lab.
It’s funny the strange things we (I) do to cope, but it doesn’t really matter what they are does it, as long as they help us out of our funks. I think I’m on my way. I’m still just very, very tired.