I really, really, REALLY don't have cancer.
This is my new backyard. Welcome to 2018.
Five days after my final chemotherapy, I posted a “final blog entry” where I swore I’d never write on my cancer blog again. (You can read it down at the bottom there.) So now, two months later, I’m gonna go ahead and write on my cancer blog again.
Zwowmp!
The truth is, I mostly wanted to use this space one last time (for realsies this time) to update everyone on my health. But there are also a couple things left to say that didn’t get said in October.
2018 has finally, finally arrived, and in the last couple months, in preparation for the new year, I’ve been rearranging my life and putting a few things in order. Here’s the highlights:
In the month of November, I went on an apartment hunting spree. I decided that my old place in Pacific Heights had officially become my “cancer apartment,” and it was time to leave it behind and start fresh. Nothing says “next chapter of life” like a new physical space, and when I spent time in my old home I was always reminded of the darker days of 2017. So I chose a bright, sunny one bedroom in the quiet Oakland suburb known as Ivy Hill. It sits right around the corner from Lake Merritt and it’s as folksy and neighborhoody as can be. It’s far from the party and the action and yadda yadda - it is not an apartment for hip happening 23 year olds. But for post-disease healing happy-again 38 year old Jason, it’s perfect.
Three weeks ago, I went to get my first post-chemo scan - a “pet CT” as it’s called . Scans during chemotherapy tell you if the chemo is working properly, but the real test is the scan you get afterwards. That’s when you find out if the chemo did more than punch the cancer into temporary submission. It’s when you learn if the chemo actually killed it dead.
Well…it did. It killed it real dead.
There is no trace of the disease anywhere in my body. The remaining cancer cells they had found back in August in my chest and armpits, all wiped from the face of the Earth. I am really, really, really Free of this nonsense, Free with a capital F.
I had to fight one final vicious battle, as the pet CT gave me terrible digestive issues for three days, leaving me out of work and nauseous and sitting in the bathroom for hours per day. I was PTSD’ing like crazy, because the stomach issues were eerily reminiscent of the worst moments from chemotherapy; and perhaps worst of all, the scan results came in late, meaning I was sitting around anxiously checking my email for news. But after all that, at the very very last moment, the oncologist walked into the room and immediately declared, with no preamble and no fanfare, that I had no cancer and nothing to worry about.
She said a bunch of other things to me after that, and her and my wonderful girlfriends and chemo-partners Sky and Christine had a bunch of dialogue, I think about next year’s scan and when to come in again and all that. But I was a little like a soldier coming out of a deep bunker after a cease-fire had just been declared, my ears ringing, my head feeling heavy and hollow, my heart bursting with new emotions I didn’t dare have before now: hope, faith in the future, real happiness. It was all I could do to hold myself in until we got out of the doctor’s office and I was able to sit down on a secluded bench to the side of the building. As soon as my butt hit the seat, I exploded. I cried so hard I thought my eyes would pop out. I shook, I trembled violently. I laughed. I cried harder. I think at one point it occurred to me that I wanted to dance, but there was no music and an awful lot of people around, so I danced in my head. I took the hands of Sky on my left and Christine on my right and I squeezed them like they were made of life-saving juices. I have no concept of time during all that - I don’t know how long we sat on that bench. Eventually I spoke for the first time - I think I said “OK,” and then “OK” about 8 more times until it really was. It was OK. Things are OK.
Something they don’t tell you about cancer, there are several fake moments when it seems like the nightmare is over. There’s the moment you finish your final chemo and they disconnect you from the line. The nurse says “wow that’s it, you’re really done,” and you sort of say to yourself “hey yeah, it’s really done.” But then you go home and you battle your worst nausea and more hair falls out and the drugs rock your world one last time. And then you pull out of it and you look in the mirror and you can breathe full breaths and you think, “ok, NOW it really is done!” But there’s this lingering thought: they have not declared me in remission yet. They haven’t looked inside me yet. They just THINK I’m done. So then you kind of bide your time for two months, try to get on with your life like you don’t have cancer. You tell people “I’m doing great” and reassure everyone with a thumbs-up. But you don’t really KNOW.
It wasn’t until I sat on that bench that it really ended. Not the CT scan; not the final battle with nausea and sickness; not even the doctor declaring the results. It was when I sat down, and cried my first happy tears over this long ordeal. That was the moment everything changed.
This past week, I laid down on the surgical table one final time to have that stupid ugly box ripped out of my chest. The port is gone; there’s just a big scar under a bandaid left, the last physical remnants of my disease. Without that, you’d never know 2017 even happened.
I am at home now, resting comfortably and healing from the surgery. There is nothing left to do - all of the weight of this is off my shoulders. The only doctors I have left to see are therapists. But even now I’m left with a puzzling thought: how very very difficult it is to say, “it’s over.” It FEELS over - it has since that cry on the bench. But it’ s still hard to say it out loud. People come up to me at work and they say “hey, I heard it’s finally over.” And I should be able to immediately answer, “Yes, hell yes, it’s over!” But instead I find myself sort of sideways-nodding and mumbling, “hmm, uh-huh.” I can tell the story of the CT scan and getting sick, of the late results and the bench and the port removal. It adds up to a real ending, a closure. But I think my emotions are still back there somewhere, worried irrationally that there are still battles left to fight. I guess I have just defined PTSD in a nutshell, so no surprises, but even if my mental case is ‘typical,’ it still bears writing down.
So here I am, 12 months out from the first signs of cancer, 10 months out from my diagnosis, 8 months from when chemotherapy started, 2 months from when it ended, and just a tiny handful of days from when the doctor said, “you’re really fine. We’re sure now. Go home.” A lot has changed since my previous “final blog post.” I’m not angry anymore. My hair grew back. My nails don’t look like a freak show anymore. The world-weariness and mental exhaustion is gradually excising itself from my mind and my body. I’m starting to feel enthusiasm for life again. I am much closer to joy.
But some things haven’t changed: I’m still afraid. I think I will be for a long time. It will be the Great Work of 2018 for me to learn how to live my life without fear again. On the plus side, my gratitude for my friends and family, for everyone who helped me pull through, is still bursting to overflowing. And I’m maintaining the determined optimism I promised myself when I first closed this blog up.
I’m ready to go to festivals, to camp in the redwoods, to get my sexy back with my romantic partners, to find old love and new love again, to breathe and to run and to bike and to live, and to do it all without the lumps I carried in my throat and in my heart for so so so long.
I am ready. If you’re reading this, come join me. Seriously - send me a text. Let’s go.
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The End. (Really.)
I don't have cancer. (the original last post.)
I've thought about this particular blog entry more times than I can count this year. It's Saturday, 5 days after the final chemo. I am "free."
I thought, on this day, that I would feel ecstatically happy and triumphant; eager and able to put this rottenness behind me; excited to get back to my 'real life.'
The reality is a bit different. I'm feeling some unexpected stuff, most notably anger. I'm angry, as angry as I was when I first got the cancer news. I'm angry at the medical establishment, for being so damned impersonal. I'm angry at insurance companies, for being greedy and terrible. I'm angry at the bureaucracy, the deep layers of tangled administration within hospitals and doctor's offices and laboratories. I'm angry at the cancer. I'm angry at Trump and the Republicans for being so blind to suffering and the right solutions for people like me with pre-existing conditions. I'm angry at how this experience has changed me forever. I'm getting my first chance to look back on all this and think about it, and I am really just furiously angry.
I'm also terrified. I know in my heart I will never believe that this cancer is gone. I'll be waking up mornings feeling my throat, looking for lumps. I'll be going to each of my future scans with trepidation and fear, wondering if that's the day that kicks off another 6-month cycle of pain and torture. I'll probably be doing this for years. It is the very definition of PTSD, and it's going to take some serious therapy to move on.
I want to keep this blog honest, so there it is, the hard truth: this is not a joyous day. I don't feel elation. I'm not even hopeful yet. I'm just tired, world-weary. California is on fire, people are losing their homes, the air is pungent with the stench of stale flame. Our insane president is trying to launch World War III. People in Puerto Rico are drinking waste water to stay alive. My toes are numb, my fingernails are still falling off, my head is bald. This is the first day I haven't felt nauseous. I'm a long way from joy.
I want to say this, though, and there is a lot of raw power in these words:
There is no cancer in my body.
Scans actually showed that a long time ago, months in fact. There are no lumps, no rashes, no night sweats. The chemo pounded it into the ground, just as it was supposed to, and kept pounding long after the cancer was eradicated. I am "in remission."
And even though I may not feel like celebrating yet, I'm going to celebrate anyway. I'm going to reunite with old friends, I'm going to go out, I'm going to throw a party, probably two or three of them. I'm going to travel and write songs and do all the things I often didn't have the energy to do.
I don't believe in my heart that good things are coming, because I'm deep in this PTSD, real real deep. But I'm still going to plan as though good things are on the way. I'm going to live optimistically, even if optimism isn't in my heart. I'm going to act like this cancer is never coming back.
These are my selfish words in closing. I have no deeper platitudes for you; at this point, 5 days out from the end of a 180 day war, I don't have any life lessons to offer, no conclusions. I'm still working on believing that I can actually live again without cancer. Hope and learning will come later, long after this blog is closed down for good.
What I do have to offer is tremendous thanks in my heart. I have so much love and thanks and praise for the people around me. It wasn't contained adequately in the last month of blog posts about all my best friends and loved ones. So I want to add to the list of people I've written about with thanks and gratitude. Call it an "honorable mentions" list.
Sarah and Makiko
My bandmates have been looking out for me through this whole process. And while I've always been personally closer to Sean and Meredith, my fellow collaborators Sarah and Makiko have been there for me too. They helped me find resources to deal with my cancer, got me in touch with other artists who had struggled with illness; they launched a big t-shirt campaign to raise money for my treatments through our Great Highway website and through friends and family; they planned the agenda of the band around my illness, gigging when I was strong enough to gig, rehearsing when I could rehearse, focusing on online stuff and recording when I was bed-ridden. They've been friends and allies in this fight, and they've been infinitely patient as I slowly climbed out of this hole. I'm grateful to them, and I couldn't ask for a more talented or more lovely band.
Mary
My sis from another miss (sister from another mister?) in Seattle has been looking out for me from afar, sending me cookies in the mail, cards, emails, texts. After she moved away from San Francisco and had her first baby, we stayed in touch less, but we have always been best friends and kindred spirits. I've known Mary most of my adult life, and she's always been very kind to me. Her cookies are also crazy delicious.
My GA Peeps
One of the last major things I did in my life before I got cancer was to graduate from General Assembly's design immersive program. Since the cancer derailed my plans to relaunch my career and push myself into the next level up, my fellow students have been extraordinarily nice to me over Facebook and in emails and texts. I've gotten kind letters of empathy and optimism from a sizable handful, and some, most notably my pal Eric, have written me many times to check up and ask if there's anything they could do. A thousand thanks to this hugely talented group.
Adina
My lovely opera star friend and friend of the band has also been regularly pinging me on Facebook messenger to check on my progress. She's a deep well of musical talent, and she's also extraordinarily compassionate and kind. I can't wait til I'm fully better, and can find new and creative ways to use her remarkable voice on another Great Highway track!
Caroline and Will
I think one of the most touching moments of my whole life is the day that, somewhere in the dark middle of this whole nightmare, Caroline sent me a song that she'd composed and recorded with her beau, about me and my struggle. It was a light-hearted and funny little acoustic number, but I cried as much as I laughed, and probably listened to it 50 times that day. I still have it tucked away on my iTunes playlist. To my festival partners and international friends, I miss you two, and hope to see you at Lightning In A Bottle again - say, in 2018?
There are still others to thank too, But I know this entry is getting long, and we still have the best Great Highway song ever to talk about. So I'll wrap this up by saying, thank you, thank you, thank you to everyone.
We did it guys. We beat cancer! Phew.
I'm gonna go lay down.