Jonathan Light

Writer. Director. Hyphenate.*

I’m fine, so far

Sorry for not updating, but all three people who read this have probably already been notified…and I somehow got thrown back into work the last few months.

I’m OK. Chemo worked. Listen to doctors, because they know of what they speak.

I have some chemo side effects and my stamina still sucks, but I’m doing very well and it looks like I’ve beaten it. That is all.

Feels weird to write this, actually. Like it was a role I played in a terrible play for a year and now it’s over, leaving only really bad memories.

Last One…

So today is my last day of [scheduled] chemo – Round 6, part B…the 12th visit total. Here is what happened this morning. (If the file isn’t visible, click on this sentence to view it.)

ChemoDreams

I’ve been lax

Sorry for the lack of updates…all I have to report is that this sucks and I’ve only got three treatments left, after which my doc thinks I’ll be done and Hodgkins will be a thing of the past.

So until then, I’ll just keep pushing through. This is what that looks like:

 

Rough couple weeks

I had a not-so-great time after the last two treatments (hence the lack of updates..) BUT I’m out of the hole, until next Thursday at least. Although chemo brain is definitely a thing…I just typed “whole” and almost didn’t notice. Proofread, people.

So for both of you refreshing this page for an update, one of you being my sister who I talk to every day anyway, I’m doing fine enough…only four more to go. Hopefully.

And not that you were wondering, but yes, the election definitely made it worse. Stress level is high, which just seems to enhance all the shit.

If you don’t feel like reading my take on it, then stop now…

I’m having trouble hearing everyone say “it will be OK, let’s just wait and see.” I’m trying my best to intellectually polish this turd, but the bottom line is this: Either he will do exactly what he’s been saying he will do, and hundreds-of-thousands-perhaps-millions of people will be “adversely affected” [translation: lives destroyed] by those policies, or he WON’T do what he says, and will instead follow along with the goals of the current Republican Congress, and perhaps slightly fewer people will be “adversely affected” [translation: lives destroyed] by those policies. 

We are way past this idea that politics is messy and this is just a normal rightward curve in a direction that will balance out to the mean. That was where we were with George W. Bush, who at least understood how a bill becomes a law, and wasn’t empowering truly evil people like Steve Bannon and Jeff Sessions. I never doubted that the country could survive Bush as President.
This is different. There are no more checks, especially if he can pack the courts. Laws are only effective if people believe in them, and if there is enough of a balance of power to allow for bad laws to be challenged. I fear that he has enough support to make things that have been illegal until now, not – and vice versa.

Everything I believe in – clean air and drinking water, voting rights, protection of speech, justice for innocent people, a healthy and robust Fourth Estate, the idea that words matter… EVERYTHING is in peril with this guy. If those aren’t priorities for you, fine. That’s sad, but fine. But if you say they are, and you think that Trump will be OK, then I urge you to be concerned and vigilant. He has launched a soft coup without firing one shot, and has infused our system with the idea that profit and power matter above everything else. 

That is the real sadness here – instead of a government whose goal is to serve its people, to create a setting in which individuals can thrive and speak out and worship and feel free from want or fear, we will soon have a government whose goal is to enhance profit and protect the wealthy from losing anything, using tactics that delegitimize dissent and stifle empathic, altruistic thinking.  And due to a combination of cynicism, mistrust of “the media” and the lack of any kind of civics education in this country – supported by a healthy percentage of racism and bigotry – he’s rode in on a wave of support from people who think he’ll upend the system, turning everything back to being “great” – whatever that fuck that ever meant.
I just don’t think whatever semblance of a democracy we have left is equipped to handle such a soft, insidious threat – a threat that uses not a shred of nuanced thinking or rational analysis, but will require both to combat. The different realities that exist in this country are too bifurcated to actually do what needs to be done and rework our Constitution to reflect the modern era. This document was, after all, created by men for whom the Internet would seem like Darke Magic and  to whom “the Negro” only counted for three-fifths of themselves. Yes, that second one changed, technically…but has it really?

Sorry, that’s a whole other essay, I guess.

To conclude: No, I don’t know how to fight it, other than trying to pressure my representatives to do so on my behalf.  I don’t have the money or connections to run for office myself, and I’m skeptical that anything other than vicious legislative fights will do any good in the current atmosphere of misinformation and mistrust of real journalists. (Cynical, I know. Sorry.) The system is what the system is, and we can only hope that we’re able to stop them (not just him) from creating a situation in which we’re unable to vote them out of power.

But hopefully that will happen, and hopefully I’ll be cancer-free when it does.

How many stages until Acceptance?

When I was diagnosed, I experienced all the stages of grief in a very short time. Within those first two weeks, I denied, got angry, bargained, slipped into depression…seemingly all at once.

Somehow, however, I quickly accepted it and implemented a plan of action. I started looking at cancer as a problem to overcome and began to explore the best options on the table to address it as nothing more or less than that: a problem to overcome. Don’t get me wrong: anger, denial and depression still slide under the covers with me every now and then, but for the most part, I’ve been lucky enough to find acceptance and I’m following a plan of action.

I don’t mean to suggest that others should process and approach their own treatments the way I have, but this election has affected us all, and if, like me, you’re stunned into anger, denial and depression by Donald Trump’s election, then we need to move quickly to acceptance and focus on a plan of action.

In Which I Embark on an Extended Metaphor

Our country has been diagnosed – no, injected with cancer…an ideological cancer. Trump and the ideals he promoted to win this election, ideals which a clear fifty-percent of the country either implicitly or explicitly condone, are cancer cells that have metastasized. Hatred, misogyny, bigotry, xenophobia, gleeful ignorance – these are not abstract things. They are actual ideals that actual people have and defend. If we allow them to, these ideals will lead us down a dark hole of destruction and threaten our entire society.

But here is an important distinction, and it cannot be emphasized enough to those who just lost: Donald Trump’s supporters are not the cancer. Donald Trump’s ideals are the cancer. We need to remember that [most of] the people who voted for Donald Trump’s ideals are people, human beings with families and loves and fears…just like you or I. They do not see these ideals as bad or hurtful, they see them  as solutions to problems that are going unaddressed. That does not make them all irredeemable idiots. Misguided? Yes. In need of a civics education free from partisanship? Absolutely (and I would argue that’s our biggest problem.)  We can all agree, more or less, that we have problems in our society. But a free society has and always will have problems…the only question is which ideals we employ to solve them. Trump has sold his to half the country – but to paint as “stupid” every person who voted for him is just as dangerous as voting for Trump. The faster we realize this, the faster we will be able to attack this cancer we all have. And yes, I say ALL – if we are to be one country, if we are to be part of a shared society and throw our lot in with each other, we have to accept the burden of our sickness together.

It is his ideals that are the sickness, his ideals that have taken hold of our society and infected our cells. It is these ideals that need to be addressed, challenged, attacked and beaten. We need chemo, immediately – and chemo is an absolute bitch. It’s hard, disruptive and ever-present. There will be days when you can’t inhale without dry-heaving, when your whole body aches, when simple acts require herculean efforts. Even on the days when you’re between treatments, it will be hanging five feet above your head, like your own personal guillotine that you know will drop in just a few more days. But that is what is called for now in our country. It won’t be easy to face the chemo we need, but face it we must.

And by that I mean, we need to get involved. We need to engage – not with those who agree with us, but with those who don’t. With love, empathy, patience and understanding – without yelling or demonizing, even when faced with it in return – we need to convince our fellow Americans that Donald Trump’s ideals are not good ideals. That they are not the ideals of a healthy nation. That they will lead to nothing but hurt and pain and destruction of all the things we hold dear as a society and as a Constitutional Republic.

And we need to do this not in the impersonal and shallow comments section, but with in-person, face-to-face discussions. Debates. Gatherings. Events that create real discourse among people and force everyone to take on everyone else’s concerns. I’m not talking about anything specific, and I don’t know what form these could take – but I do know that actual dialogue is necessary, and that it is still possible for everyone to meet somewhere in the middle if we just took the time to be a society again. Like chemotherapy, it is an uncomfortable, difficult path. But like chemotherapy, it’s our last, best hope to rid our body of this cancer.

I truly believe the ideals in our arsenal can win. Inclusiveness, generosity, empathy, society and love…these all stand in direct opposition to those other ideals espoused by Donald Trump, and they are the best bet for a healthy republic. But they will not win if the only way we’re promoting them is by sharing trite memes or re-tweeting clever one-liners for our own personal echo chamber. We need to engage with those in our society who think Donald Trump’s ideals are good, who think that the cancer doesn’t exist, and convince them to join us in the I.V. chair. It’s a difficult task, and there’s no guarantee of success, but if we want to fight for the ideals that would relegate Trump and his to the proverbial dustbin, we have to roll up our sleeves, take our anti-nausea meds, and shove that needle in as quickly as we can.

I’m grateful if you took the time to read this. Hopefully we can overcome this together.

Chemo Climb 2016

A week ago, I actually climbed a real route in the Gunks (New Paltz) – and even though it took me half an hour longer than it should have and I was huffing like I was at 25000 feet, I actually followed the whole thing clean, no falls or weighting the rope or anything. It was the best day I’d had in months, even though I couldn’t really move for two days afterward. Thanks to Felix Danila for guiding me and taking this photo.

20161023_140126I realize this is ridiculous, but I’m starting to feel a little guilty. It makes me sad to sit in the chemo room next to so many people who are really struggling and have the nurses comment loudly on how well I’m doing. Not that everyone is anything but supportive and upbeat… in fact, it’s a surprisingly friendly room, given the hell that so many people are going through. Chemo-side-effect remedies are a wonderful topic to bond over with strangers.

So yes, I’ve been doing well. The pattern is holding so far this time – I’ve been sick and run down since chemo Thursday, but I’ll probably be fine in the next few days. This last one was number 6, which means I’m halfway through, believe it or not. As I’ve said before, it feels like I’ve had this forever and that I only just started last week, all at the same time.

So anyway…chugging along. Give someone a hug today.

 

I’ve been doing this for two months?

So I wrote an update a week ago, and my chemo brain prevented me from actually posting it, and I only just found out it was missing when I went to write something new today…so forgive the delay..

The last cycle was actually fine. The best post-chemo week I’ve had in a whole two months.  Not even a joke – I felt pretty good for almost the full two weeks. Still fatigued (of course) – but I walked 20 blocks last week and didn’t collapse, I had a huge Rosh Hashanah meal and didn’t feel like I had to s’lichot it back up, and I haven’t really lost any more hair (although I did give myself quite a bit of a mow just to avoid shedding everywhere…)

Which brings me to this past week, and more good news: I had the traditional Yom Kippur PET scan on Wednesday, and – in a nutshell – this s**t is working. The doc said the results were better than he expected, and the lymph nodes have really shrunk. Of course I asked if that meant I could stop the treatment early. He just laughed and laughed.

Then I had chemo Number 5 yesterday, and today I’m feeling spent, but not terrible. So all in all, I have been so terribly lucky with all this. I see other patients here who are enduring so much, and I almost feel guilty that I can’t share their pain.

The chemo has just become a part of my life that I have to endure – like a really annoying bi-weekly gig for terrible clients who fill my arteries with poison and make me sick. It feels like I’ve been doing this since I was 10, but at the same time just started it last week – it’s surreal how it just becomes part of your schedule and routine, even if you don’t really ever get used to it.

Let me wrap this up by imploring anyone who might even be considering it: please don’t vote for Trump. He is just horrible. It’s a shame that this isn’t just self-evident to everyone, but it’s really  scary that it’s even close. I made a dumb joke during the debates about him causing me cancer all over again, but then I realized that this might actually be true – my symptoms started around the time he sealed up the nomination, and that just can’t be a coincidence. A lot of people are saying it, believe me.

All my love to everybody – please keep in touch.

Sautéed Cardboard with A Cardboard Coulis Over a Bed of Cardboard

That’s what’s on the menu as of last night. They try to warn you about the possibility that your taste buds will be decimated, but it’s not good this round.

I can basically only taste really salty things and sriracha, and the latter makes me sick. It’s like nothing I’ve ever experienced. BUT the good news is it should be short-lived…hopefully by next week I’ll be back to my normal, eat-everything self.

Other than that, things went fine at chemo number 4 yesterday. I have an appointment with the doctor on Monday for a quarter-cycle checkup and I’ll have another PET scan next week so we’ll see just how effective it’s been. The doc is pretty sure I’m doing fine, and his optimism is contagious, so as long as this thing is going away, I’ll deal with having everything taste like a Cardboard Special with Cardboard Slaw and Cardboard Dressing on Rye Cardboard.

And besides, it just means there more for this guy to eat:

isaac-eating

CLIMBING METAPHOR ALERT!

I know I promised to keep these to a minimum, but climbing mountains is the perfect metaphor for anything in life, so I can’t resist…

There are sections of long climbs that have easy, gentle terrain – the climbing is not too difficult, you can move un-roped, it’s generally secure, and you feel that things are going fine.

But you also have a view of the massive headwall that looms in the distance, growing bigger and bigger as you approach…in the back of your mind, you know you’ll have to tackle that soon, and endure several days of agony. But beyond THAT is more easy, fun climbing…it’s a wonderful cycle.

Well that’s generally where I am right now. I will reach that headwall this coming Thursday, and the days after that will be a bit a’ rough, but for now the climbing is pretty easy and I’m moving well. It’s been a good couple of days in the mountains.

 

 

Nausea sucks

And not even just the thing – even the word sucks. Who came up with that word? I feel slightly nauseous and then just saying the word out loud makes me feel even more nauseous. It’s one of those words that looks and sounds EXACTLY like what it is, isn’t it?

Fun grammatical fact: the correct word to convey the state-of-being of nausea is actually “nauseated” – so I should have written “I feel nauseated.” But now I’m even more nauseated, because I just realized I’m being THAT guy. Sometimes you just gotta let these things slide.

Other than that, I’m doing well enough after my third treatment on Thursday. The last two days have been not the best – I’m fatigued and feeling really “off” – but I’m functional enough. There’s some soreness from the magical white-blood cell shot Neulasta [see our ad on the Sunday morning shows!] but that should pass soon as well. Hopefully the next 13 days will be uneventful – each day farther away from the chemo day is better, so I just have to hang on until the next one.

The nurses were very happy to see me with all my hair, but they were skeptical that it would last much longer. I explained to them that very few things on this planet can conquer my Jew-Fro, so we’ll see who wins this battle.

And, as always, if for some reason this isn’t a detailed enough update for you, please call/write/whatever. It’s been wonderful to hear from everybody, and the support and outreach has been just epic. I’m very, very grateful.

 

 

 

 

 

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