Seth Has Cancer

“Hello, thank you, I have cancer.”

- Tig Notaro, and now also me

Seth's surgery is scheduled for july 2nd, 2024

If you want to receive email updates on my progress, sign up here.

first time?

If this is the first you're hearing about my cancer, welcome! There are a number of you with whom I've become friends across the last year, and you may be shocked to learn that I've been living with (a very treatable) cancer for the last year. Please don't take it personally that I haven't told you! It's just me trying to manage my emotional labor!

 

Anyway, if you're new, I recommend scrolling down to "Original FAQ" and starting there, then catching up on the "Past Updates" before coming to the new "Surgery FAQ" section. If you've been following along the whole time, feel free to pick up wherever you left off.

 

Thanks!

i thought the meds were working! why do you need surgery?

The meds worked incredibly well! Surgery was always the plan. The goal of a year of medication was to shrink the tumor, to make the surgery easier. A bigger tumor means bigger cuts means more infection risk. But thanks to the medication (the absurdly-named Gleevec), the tumor has shrunk from roughly the size of a baseball to roughly the size of a golf ball. The miracle of modern science! But the tumor still needs to be removed so that it doesn't grow or metastasize. So, in short, everything is still going very well--better than expected in fact.

Well okay, that's good! can you tell me about the surgery?

The surgery I'll be having is a partial gastrectomy, which means Dr. Gaskill will be removing part of my stomach. As you may recall, the tumor is a stromal tumor, meaning it's on the connective tissue in my abdomen. So it's not actually "on" any organs, but it is up against my stomach, so in order to remove all of the cancerous tissue, they will be removing part of my stomach. Originally, we expected that my gall bladder would be removed as well, though later scans suggest that might not be necessary.

Will you still be posting updates here?

Probably not. Basically, Suzy will be handling updates while I'm recovering, and the interface I use for this website is... tedious. So she will be sending updates to a Google Group. You can submit your email address to be added to it, or you can add yourself directly to the Google Group.

how do you feel about all this?

It's a little weird honestly. For a year now the surgery has been looming in the future, like "we'll cross that bridge when we come to it." And now it's like "welp, here's the bridge." I'm not particularly looking forward to the recovery, though if there's a time of year to have limited mobility, July in Sacramento might be it. I am looking forward to catching up on some crochet projects, some reading, and some TV and movies I've been wanting to watch.

 

I'm also hoping that this doesn't derail my timeline for finishing school.

oh right, how's school going?

School has been great, and I love all my friends and teachers at The Chaplaincy Institute. I'm currently on track to be ordained as an interfaith reverend in May 2025. If recovery takes a month or two, I should still finish on my current timeline. If it takes longer (which is not expected but still possible), things start to get a little more complicated.

how long will you be in the hospital?

It could be anywhere from coming home same day (not likely) to five days. It depends entirely on what Dr. Gaskill finds during the surgery--imaging can only tell us so much. Basically there is a range and the most likely outcome is somewhere in the middle. We initially thought the stay might be shorter, but we decided we would rather err on the side of caution. If something weird happens with my feeding tube in the middle of the night, it's much easier if I'm already in the hospital than if I have to go to the ER.

 

Things that will happen regardless: The surgery will be performed by Dr. Gaskill and his robot. There will be four cuts: three will be small (for robot arms and scope) and one will be around 1.5 inches (to remove the tumor).

 

The easy recovery scenario: In theory, the tumor could be barely touching my stomach, and the surgery will be very easy. In this case, I could come home as soon as the same day, though one night overnight is still more likely.

 

The median scenario: Most likely the tumor will be touching my stomach and we're sort of expecting that Dr. Gaskill will have to remove as much as a third of my stomach. If the tumor is not touching the pylorus (the junction between the stomach and small intestine), there will not be much additional reconstruction to do, but having a third of your stomach cut out is still a pretty big deal. I would likely spend a few nights in the hospital. Most likely I will have a feeding tube placed in my stomach so that I can get my nutrients that way while my stomach heals. Being in the hospital obviously makes it much easier to manage that, plus that way I don't have to worry about our dogs jumping on me and popping a stomach staple.

 

The difficult recovery scenario: In this scenario, the tumor is not only touching my stomach, but is also touching my pylorus. Dr. Gaskill would not only have to remove part of my stomach, but also part of my small intestine. He would then create a new hole in the stomach and re-attach the intestine there. This would probably result in a 4 or 5 night hospital stay, as well as a longer recovery overall (more on that shortly).

can i visit you in the hospital?

If you're local and available and the doctors allow it, you can potentially visit me in the hospital. I probably won't be that much fun, but it might be nice to see a familiar face if I'm not grumpy. If you're one of my many friends who works in the UCDH system, I assume you can look up the info on how to find me? Otherwise check with Suzy, since she'll obviously have pretty up-to-date info.

what will recovery be like once you get home?

You can sort of take the scenarios from the question above and then extrapolate them out. If the intestine needs to get re-attached, the recovery will take longer, be more painful, etc. I will have a feeding tube while in the hospital, but hopefully will have switched to a liquid diet by the time I get home. It will probably be a couple of weeks until my stomach is sufficiently healed for me to eat solid food.

 

My time at home will mostly involve very little movement--we got a nice new recliner so that I can sit comfortably in the living room while I crochet, watch TV, play Nintendo (I got a Switch, so let me know if you want to play Mario Kart or Mario Party or something). I will probably be heavily medicated for a while. I will be icing my wounds for a while. I will sleep a lot.

 

Thich Nhat Hanh (Thay, for those who call him that) said "animals in the forest, when they get wounded, deeply wounded, they know what to do. They find a place, a quiet place, and they lie down [for] many days. Not thinking about eating or anything else. There is wisdom in that. Because they know that resting is the only way by which they can heal themselves."

can I send you food or something?

I (Seth) won't be having solid food for at least a couple of weeks after the surgery, but Suzy would definitely appreciate it. Our friend Lia Nagase has helpfully set up a Meal Train. NOTE: Meal Train seems to really want to push people to buy gift certificates to chain restaurants that we don't generally eat at. We would appreciate it if you'd ignore that. If you click "Recipient Info" it will show you some of our preferred local options.

 

You can also send Suzy a gift credit to Uber Eats or DoorDash or something like that if that's easier. Or you can venmo her some money at https://venmo.com/u/Suzy-Goldenrkanz (yes she knows her name is misspelled in the url, and no I don't like it either, it hurts my brain).

 

We will also be relying more on our amazing dog walkers and trainers at Midtown Mutts. If you want to gift us a dog walk ($50) please venmo Suzy at the above address, and just say in your notes that it's for a dog walk.

How else can i support You?

The single best thing you can do for me is make life easier for Suzy. She will have a lot on her plate with taking care of me and our two insane dogs--three creatures with significant (and varied) needs. We created an email list (at the top of the page) so that she can send mass updates without needing to respond to lots of texts and emails. Please try to be mindful about texting/emailing/calling her, especially during the surgery and immediate recovery. If you want to check in on her, please do so with the understanding that she may not have the capacity to respond.

 

I have some free time--can i help you in-person?

If you are local( or local-ish): once I am home I will have very limited mobility. If you want to be helpful, one option would be to hang out with me in our living room, and get me water / replace my ice pack / help me get out of my chair, etc. This would give Suzy a break from having to do that. It's too early to say how much energy I'll have for socializing, so please understand that I might spend your whole visit napping or just watching TV. But it's still helpful to have someone on hand for helping with stuff. Please check with Suzy about scheduling.

 

If you are comfortable managing two strong and chaotic dogs, it would also be helpful to have you take our dogs out (the river, the park, or even just a walk around the neighborhood)

 

There will probably also come a time when I am well enough to stand and walk, but not well enough to drive, so if you are available to give me a ride somewhere, I may take you up on that.

 

If you are not local: If you're interested in visiting, please check with Suzy. As noted above, Suzy will be working and I will not be very fun, but depending on our needs, we may welcome a visit.

okay great. that is useful information. is there anything else that would be supportive or helpful to you?

Since I'll likely be in the hospital for a few days, I'm planning to bring a digital photo frame to keep in my room. If you have any nice photos to share (of you, your kids, your pets, something beautiful in nature, whatever), please upload them to my shared Google Photo album. Just click the little thing that looks like an image icon with a plus sign on it. The day before the surgery, I'll take the photos down from there and load them into the frame.

 

You can also send me video messages to watch when I'm up to it--please do this over WhatsApp, Signal, or Telegram, since I have an Android and MMS videos are a disaster, especially from iPhones.

 

Lastly, I would love to organize a meditation group for when I'm feeling up to it. If you're interested in joining, please sign up here.

since you're in seminary, do you have any prayer requests?

I am in seminary, but my theology leands Buddhist/Agnostic. I'm happy for you to pray or meditate or smile or practice in any way that is helpful to you and will help you cultivate peace and understanding within yourself.

 

If you don't have much experience with prayer or meditation and you'd like something to try, I might recommend metta (lovingkindness) meditation. You can use this recording from Thich Nhat Hanh (Thay) as a guide.

 

If you're new to mindfulness practice and want to learn a bit more, my dear friend Shaun Donaghy has a podcast called Mindfulness for Beginners.

 

If you're looking to go even deeper than that, my dear friend Brother Freedom has a few meditations on his website--you can scroll past the articles to the videos, if that's all you're interested in.

 

Yes, I have multiple dear friends. Many! Including you!

Aw, thanks. So back to your treatment. does this mean you're done taking gleevec? How has that been going, by the way, I forgot to ask earlier.

No worries, there's a lot of information!

 

The Gleevec has been really effective (see above re: tumor size), and the side effects have been pretty minimal. I have some mild nausea if I don't eat a big breakfast, I'm probably a little more tired than I would be otherwise, and I now sometimes get mild sunburns if I get a lot of sun, whereas I previously almost never got burned.

 

I went off the Gleevec on June 2nd, one year after starting it. Because it's an immune suppressant, I had to go off it for a month before surgery. Basically it would have made my body a little bit worse at healing.

 

Starting about a month after surgery, I will go back on the Gleevec, probably for about three years. This is preventative, to keep the cancer from coming back.

last and most important question:

do you get to keep the tumor? like in a jar or something?

I do not get to keep my tumor. I have asked repeatedly. I am really salty about it. Apparently they need it for "medical research" and "possible future diagnostics related to my cancer." I think it would be much better served in a jar on my shelf. If you want to put together an Ocean's Eleven style heist to get my tumor in a jar and bring it to my house, you do not have my explicit approval (for legal reasons) but let's just say I won't be mad and you know how to reach me.

4/16/2024

I had an appointment yesterday with my surgeon ( Dr. Gaskill), and he is also very happy with the progress of my treatment. I have a follow-up scheduled with him in mid-June and we are targeting early July for surgery to remove the tumor. The good news is, since it has shrunk so much, it should make the surgery much more manageable. He says there's a pretty good chance I'll be able to go home the same day, though we won't know for sure until I'm on the table. But he also thinks even if I can't go home the same day, I shouldn't need to stay in the hospital longer than one night.

 

The other good news is that it now seems pretty likely that I'll get to keep my gallbladder. In the beginning, the tumor was up against the gallbladder, so there was concern it might have to be removed to avoid a recurrence. But there now appears to be space between the organ and the tumor, making that less likely. Dr. Gaskill did offer to remove the gallbladder anyway, saying "I always say the only good galbladder is a gallbladder in the garbage," but I declined. As a lifelong fromagivore, this is fantastic news.

 

Content warning on some gross details here below.

 

The main determining factor of when I'll get to go home and how long the recovery will take is where exactly on the stomach the tumor is. If it is too close to the connection between the stomach and the small bowel, he will have to cut part of both organs, and basically create a new hole in my stomach for it to drain to the small bowel. But if there's enough space, he'll be able to leave the existing junction intact. So fingers crossed for the former!

4/2/2024

My latest CT Scan results are in and the news is great. The tumor has shrunk to 4.1cm x 5.3cm x 2.5cm. Which means the volume is down to 15% of the original size! The tumor has gone from being around the size of a baseball to about the size of a marshmallow. Gleevec is really a miracle drug. Needless to say, my oncologist (Dr. Carr-Ascher) is very happy.

12/29/2023

I have COVID! It sucks!

 

Here are some things that are tedious about having COVID while also having cancer and also it's a holiday weekend:

  • I do not feel like eating (COVID). But I need to take my Gleevec (cancer meds) every day. If I take my Gleevec without a very full stomach, I get nauseous. Like pretty bad nausea. So this morning I basically had to force myself to eat breakfast so that I could take my meds.
  • Because I am immunosuppressed (cancer treatment), I am eligible for COVID antiviral meds. But Paxlovid, the most common and most effective COVID medication, has a harmful interaction with my Gleevec (cancer meds). So instead I have to go get an infusion of Remdesivir. This requires going to the infusion clinic at the hospital. It also requires three doses, so that's three trips across the next three days. Driving should be interesting.
  • The nurses who are working at the infusion clinic over New Years Weekend obviously (and understandably) are not trying to add extra work to their days. So we had to call them and be a little persistent to get me scheduled to start today instead of tomorrow.
  • The nurses at the infusion clinic are accustomed to working with chemo patients, who have a port, and therefore don't need an IV. They are therefore not very practiced at placing an IV. Use your imagination for the rest.

 

Anyway, where a mask. COVID is everywhere right now. And I can tell you as someone who is multiply vaccinated, COVID still totally sucks. I feel like there's an angry little demon in my lungs and sometimes he moves into my sinuses but right now he's in my lungs, and then also sometimes he's in my throat. And he never fully leaves any of these places but he concentrates on one spot or another. So right now my chest feels very congested but my sinuses feel only somewhat congested and my throat only hurts a little. This morning I did not feel super congested but my throat was on fire. Stupid COVID demon. What a jerk.

 

Also I'm bummed because Suzy and I were supposed to travel to Deer Park Monastery today, which is one of my favorite places on the planet. And instead of spending four days in the most emotionally supportive environment I can imagine, meditating, eating delicious and healthy food, hiking in the San Diego Mountains, etc, instead of that I am typing on a computer while questioning whether existence is just an illusion. COVID is a jerk.

12/20/2023

I had my second PET scan today. Well, technically I'm writing this on 12/29 because I have COVID and little else to do (see above). But we're going to use the power of imagination and flash back to nine days ago. Ready? Poof! It's 12/20/23.

 

I had my second PET scan today. I won't get results until mid-January. Between past injuries and current cancer, I now have some experience with different kinds of scans. I think I can comfortably say that PET scans are my least favorite. I will note that I've never had a mammogram and I haven't (yet) had a colonoscopy, so to the extent either of those qualify as "scans" they do sound worse.

 

Anyway PET scans aren't like actively unpleasant and they're certainly not painful. They're just tedious and disruptive. This is the process for having a PET scan:

  • Do not eat anything for 10 hours before the scan.
  • Do not drink anything except water for 10 hours before the scan.
  • Check in at the scan clinic.

  • Recieve an IV-style injection of some kind of lightly radioactive sugar solution. This causes cancer cells to vibrate faster than non-cancerous cells, so the cancer cells glow in the scan, so the scan can detect any cancer anywhere in your body. This itself is not a big deal (though I'm not phobic of needles or injectables).

  • Wait for an hour and forty-five minutes. Yep, the solution takes around 105 minutes to make its way through your whole system. During this time, you just wait. Now, I realize this can be kind of pleasant. As someone who enjoys meditation, it can be quite pleasant to wait a while. And I enjoy reading--at my first scan I read several chapters of The Hobbit. The problem here is that you also haven't eaten anything since the day before, and you haven't had any coffee or anything. So it's just sort of 105 minutes of haze.

  • After 105 minutes, get taken in to the scanning room.

  • Lie down on a table, with your arms above your head.

  • Stay still for 25 minutes while the table moves in and out of a tube and pictures of your insides are taken.

  • Leave.

  • By this point it's a little after 11. And you (if you are me) are very hungry. Good news! There's a great sandwich spot right across the street! Bad news, it opens at 11:30.

  • Wait until 11:30.

  • Go to the sandwich place and order lunch. Eat lunch. Go home.

 

As I said, none of it is painful. It's just tedious and disruptive. No food or coffee until almost noon. It is very hard to leave that and then go do anything else with your day.

 

Anyway, that is what I did today (I'm still pretending that today is 12/20/23 even though that was technically nine days ago).

 

Are PET scans the worst part of having cancer? No. Would I choose to get a PET scan if I didn't have cancer? Also no.

9/21/2023

I got my first scan and the results are great. It was always likely that the meds were going to be effective, but it was even better than expected. When it was first detected, the volume of the tumor was 361.75 cm3. In my second scan, taken last week, it is down to 243.32 cm3. That’s a 33% reduction over three months of treatment! Anyway, I’m still feeling fine, no side effects or symptoms to report. So for the moment we’re just staying the course. In three months I’ll have another scan and at that point we’ll probably start figuring out the surgery timeline.

 

Also if you have been checking in on me (or even just thinking about it), first, thank you. Second, I would encourage you to check in on Suzy as well. It is obvious and understandable that people would be directing their attention to me, and it is appreciated, but it can be easy to forget that this can be just as hard on the partner, and she needs support too.

8/18/2023

I’m a couple months into treatment and feeling fine. Aside from some mild sun sensitivity I have no real side effects from the meds. I used to basically never get sunburns. Now if I’m in direct sunlight for a while without sunscreen, I’ll get a burn that will usually go away in a day or two. That’s really it though. I’ll likely have a scan next month and then a follow up with my oncologist (Dr. Carr-Ascher) to see how well the treatment is working. Other than that, we’re mostly at no news is good news!

6/21/2023

The PET scan didn't detect any cancer aside from the expected tumor. This is good news.

What kind of cancer is it?

It is a GIST (gastrointestinal stromal tumor), an uncommon, but generally slow-moving and treatable sarcoma. "Stromal tumor" means it's growing from the connective tissue in my abdomen, rather than growing on an organ. It's up against both my stomach and my gallbladder. The tumor is 8 cm (a little over 3 inches) at its longest, roughly the size and shape of a clementine or mandarin. (American Cancer Society on GISTs). You can see the tumor on the CT scans below, where the colored lines intersect. 
 

Though this cancer is on my stomach, the doctor was very clear that this is not the same as “stomach cancer,” which would be a very different diagnosis and prognosis.

 

It’s useful to understand that the term “cancer” actually applies to a pretty wide range of things, which have the common attribute of cells doing weird stuff, but in other ways are very different. So while “cancer” is applied to both my GIST and, say, pancreatic cancer, the underlying conditions (and associated prognoses) are very different.
 

How did you get this cancer?

Unlike some cancers, this one was probably not caused by tobacco or the sun or the million other things in our lives that cause cancer. Most likely, it’s not even something I inherited genetically. Instead, this seems to be a random mutation that DNA just kind of does sometimes.

How worried should I be as your friend/relative/casual acquaintance?

It is pretty unlikely that this will kill me, and especially unlikely that it will kill me any time soon. GIST is known for growing very slowly and for its low rate of metastasis. Metastasis is where the greatest risk is.

 

The five-year survival rate is about 85%, but that overrepresents people who don't detect the tumor until it is causing symptoms. It also overrepresents folks who have other severe health issues to which the GIST is incidental. Because GISTs tend to be asymptomatic, they often go undetected, so the actual survival rate is probably higher. I am also very much at the younger end of the distribution, which increases my chances.

My friend Mike is a nurse and talked to one of his colleagues who has worked as a hospice nurse for a few decades, and she has never seen someone in hospice because of a GIST.

 

That said, it's still cancer. The greatest risk is from metastasis. I have a PET scan scheduled for June 6 which will tell us whether or not it has metastasized. If it has, then things get scarier, but again, it is unlikely. 

 

Update (6/21/23): The PET scan didn't detect any sign of metastasis.

You said it's an uncommon cancer. How "uncommon" are we talking?

Put it this way: my primary care doc had heard of GIST but knew basically nothing about them and had never encountered them in person. My gastro-oncologist sees them pretty frequently.

What symptoms are you having?

So far, I have no symptoms, and GISTs are known for being asymptomatic. They tend to be found either when they are symptomatic (and thus more advanced) or incidentally through a scan for something else.

 

The fact that I have no symptoms is also a good sign, suggesting that the cancer probably has not spread anywhere else in my body.

If you're asymptomatic, how did you find it?

I went to the ER in early April for an unrelated (gross but manageable--details available if you like gross body stuff) skin abscess, and the CT scan revealed a mass in my abdomen. I had a scope/biopsy a little over two weeks later, the results from that came back another week and a half later, confirming the tumor is a GIST.

This started in April? What was the timeline of all this?

My ER visit was the first week of April, the night of the second passover seder. In the moment, I was mostly devastated to miss our friend Sam’s ridiculously good food, but Suzy was kind enough to bring me some in the ER. I had my CT scan late that evening.

 

At about 1am, the new ER doc came in and introduced herself (there had been a shift change). She told me “there is a mass on your liver and I’m referring you to the Cancer Center.” At about 2am I drove home thinking “liver cancer, I guess I’m dying.” The next morning, I told Suzy. She then spoke to one of her colleagues, who is a doctor, who told her that liver tumors are extremely rare but liver cysts are fairly common. As someone who gets cysts, this is what I thought it was, and I thought “oh okay, I guess I’m fine.” 

 

A couple weeks later, I went in for a biopsy. Afterwards, I read the report, which said “likely GIST, need to rule out other,” and I Googled “GIST” and saw the word “tumor” and again thought I was dying. The next day, Suzy’s colleague did some research (as noted above, most docs aren’t very familiar with GISTs) and informed her that they are known for being slow-growing and treatable. So for the second time in two weeks, I went from thinking I had months to live to thinking I had decades. Also it was my birthday (April 22). Happy birthday to me. 

 

At the end of the first week of May, I finally got biopsy results, and had my first meeting with my surgical oncologist the following Monday. A week after that, I had my first meeting with my medical oncologist. Across those two visits, I started to get an understanding of what the future will look like.

That sounds like quite an emotional roller coaster.

Yes.

Is it therapeutic to write all of this out?

Also yes.

Okay so what is the treatment plan?

I will eventually need surgery to remove the tumor, as well as my gallbladder and part of my stomach. How much of my stomach will be removed won't be determined until the surgery itself.

 

The surgery is "eventual" because the first intervention will be medical. GISTs are usually responsive to a drug called Gleevec (Imatinib), a "small molecule inhibitor" that works sort of like a highly targeted chemotherapy, in pill form. The goal of the Gleevec is to shrink the tumor, which would make the surgery easier and reduce risk of complications.

 

I am awaiting results of further testing on the biopsy. The additional testing will hopefully confirm that my tumor is one of the 98% of GISTs that are responsive to Gleevec, rather than one of the 2% that are not. I don't actually know what happens if it's one of those 2%--we'll cross that bridge if/when we come to it. 

 

Update 5/31/23: The biopsy did not contain enough cancer cells to test, so we're just going to start the Gleevec and see if the tumor responds to it . If not, there's a different drug in the same class that we'll try, but the odds are very good that the Gleevec will do the trick. I'll be starting the meds on 6/3/23.

Update 6/7/23: I've now been on Gleevec for five days. So far no major side effects. I'm a little tired but honestly that might just be [gestures broadly at everything]. 

Update 6/21/23: I've been on gleevec for two and a half weeks. Still no major side effects. Some intermittent fatigue but hard to say for sure that it's related to the meds. I did also go up to Tahoe for a few days and I managed to get sunburned on my knees–I put on sunscreen but didn't account for shorts riding up when I sat down. I don't tend to burn so this is probably gleevec-related, but also I was over a mile closer to the sun, so it's probably related to that as well. 

 

Once the GIST is confirmed as being responsive to Gleevec, I'll start the medication immediately. I will then undergo a scan every three months to monitor the tumor. Gleevec usually takes about a year to have its full effect, so the hope is that the tumor will shrink over the course of a year.

 

If a scan reveals that the tumor has continued to grow, we will move up the surgery. This is considered fairly unlikely. If the tumor shrinks super quickly (also unlikely), we can do the surgery sooner. The most likely scenario is that I will have surgery after a year of Gleevec.

 

Once I have the surgery, I will then stay on Gleevec for at least another three years, and probably five--the research is evolving.

Will this provide any opportunities to comment on the dysfunctions of the American healthcare system?

For sure! Let me tell you about Gleevec: on our (pretty good) insurance, the default copay is $1700/month, which, if I’m on the drug for six years, adds up to over $120,000. Because I had time to jump through some hoops, they lowered it to $150/month, which comes to around $10,000 over six years. If I jump through some more hoops, I may be able to get reimbursement to lower it again to $0. Which basically means they start out charging $1700/month for life-saving treatment, not because it costs that much, but because all healthcare costs are functionally made up, and they're just trying to see if they can get away with profiteering off of cancer. The American healthcare system is a national disgrace.

What side effects will you experience? Will it be like chemo?

Gleevec definitely has less severe side effects than chemo, but there is still plenty to deal with. I will probably not lose my hair (insert "too late" jokes here), but I might. I will likely be very tired. I will likely have moderate to severe nausea, for which I've already been prescribed Zofran.

 

I will also become more sun-sensitive and my immune system will be weakened, so Suzy and I will probably be wearing masks much more often in public spaces--not just for COVID concerns, but for any other communicable diseases as well.

 

My oncologist says that the first month or so tends to be the worst, and that the side effects should ease up a bit after that. She also says that because I don't tend to experience side effects from other meds, there is a chance they will not be so bad.

 

Gleevec is mildly toxic, and will be in a number of my bodily fluids. This means that if I'm out in nature, I'll probably have to pee in a bottle, rather than just peeing on a tree or whatever. For six years. I am a little devastated by this to be honest. It also means I will have to temporarily give up on my dream of installing an outdoor compost toilet in the backyard.

Do you have good doctors in Sacramento? Are you sure you wouldn't rather go to New York for treatment?

I have great doctors in Sacramento. UC Davis Hospital is an extremely high-quality care system. The state-of-the-art comprehensive cancer center is about a ten minute drive from our house, and has free valet parking.

 

My medical oncologist is Dr. Janai Carr-Ascher. She is fantastic.

 

My surgical oncologist is Dr. Cameron Gaskill. He is also fantastic.

 

My primary care doc, Dr. Karen Mo, is similarly fantastic.

 

If there is somehow something that Davis is unequipped for, I am just a couple hours from UCSF and Stanford. But there's no reason to think this will be an issue.

 

Another nice benefit is that we have several friends who are doctors and nurses in the UCDH system, so when I end up having surgery and being in the hospital for an extended stretch, I'll have plenty of people to visit me.

How are you handling this, like emotionally speaking?

In the tradition of the Jewish people, I'm handling things with humor.

 

In the tradition of white cishet American men, I’m tempted towards denialism. This is particularly complicated by the fact that I currently feel fine, and aside from the imaging, I’d have no reason to think I have cancer. But denial is wildly unhealthy, so I’m working through that.

 

This is a good meme, which accurately describes my state of mind in my first meeting with Dr. Carr-Ascher:

 

Please note that the original version of the above tweet is about therapy, which also accurately describes my experience.

 

The first few weeks were a bit of a roller coaster, because before getting the actual diagnosis, there was a lot of oscillation between thinking I was dying and thinking I would be fine, as each new piece of information became available. Right now it seems like I am probably not dying, but that this will have a pretty significant life impact.

 

Losing my gallbladder will mean that my diet will have to change substantially. I'm actually sort of looking forward to this a bit, because after 41 years of eating like a college student, I will have no choice but to improve my habits. I'll definitely miss all the cheese, but as I said to Suzy, cheese and I had a good run.

Beyond that, I'm trying to get over the instinct towards denial, and actually practice sitting with the whole complex range of emotions. Therapy and meditation practice have been helpful with this, but there's definitely more work to do.

 

I have also had to be reminded that just because my cancer probably isn’t terminal, that doesn’t mean it’s not a “real” cancer. This is going to be a major life change and the particulars of that haven’t really begun to unfold.

I've been learning to crochet, just to have a meditative practice that lets me work with my hands. It's fun! I’ve been using kits from thewoobles.com. This is my most recent project:

Update: I have not crocheted anything since this dinosaur. I started making a unicorn and it has been sitting in its kit half-done since we moved back into our house. Hooray ADHD!

How is Suzy handling this?

You'd do better to ask her, but from where I sit, she has been incredibly supportive, while not stifling her emotions and making sure to take care of herself. But I’m certain she’d appreciate you checking in on her as well.

What can I do to help?

I appreciate occasional check-ins. I like conversation. If you want to send food/mealtrain type stuff at some point, that would be welcome too. If you’re local, let’s hang out. If you’re not, we also love having visitors and being able to show off Sacramento. Sacramento has so much amazing nature and food, and my relationship to both will be changing over the course of the coming months and years. There are nonstop flights from all major airport hubs and many other cities, and it is usually possible to get here from anywhere with a maximum of one connecting flight. Our airport code is SMF.

 

If you’re not sure, ask. “Is it okay if I ______” is a perfectly acceptable question, and helps me maintain my own healthy boundaries. Please respect the answer you receive. Please also understand that a “yes” one day may change to a “no” the next, depending on how I am feeling. A lot of this is very unpredictable, and circumstances will change pretty regularly.

 

At some point I will have surgery and the recovery process will be pretty long, and my need for support will be more acute. That would also be a good time to talk to Suzy about support/relief. If you’re in a position to come visit and take care of me for an hour or a day or a week, it will be really helpful to her mental and emotional well-being, which will in turn be helpful for my mental and emotional well-being.

 

Seriously, come visit, I have cancer. Also Sacramento is great. Also I have cancer.

What is not so helpful?

Please try to refrain from having feelings at me or Suzy about my cancer. My therapist used the model of a concentric circle--when we are close to someone who is experiencing something big and heavy like this, we do best to provide support for people who are closer to the center of the circle, and to seek support from people who are farther out from the center of the circle. I am trying to remember that it's okay for me to prioritize myself when it comes to managing my cancer.  (More on “ring theory” here)

 

I should also note that I recognize that this will bring up pretty big feelings for a lot of you, particularly those of you who have lost loved ones to cancer or have experienced it in other ways that have left a mark. I do not want to trivialize that, and I’m sorry for the pain this will bring up. I hope you have folks to lean on.

 

Saying things like “it will all work out” or “everything happens for a reason” or other forms of denialist positivity. I’m definitely able to see ways that this can be a learning/growing experience, but it’s still cancer and there’s a whole lot of uncertainty still ahead.

 

Please don't send us stuff without checking with us–we have a lot of stuff. We're also currently not even living at home because of a surprise home renovation (a long story). Gift certificates are very much appreciated, but if you have a hankering to send us some kind of physical object, please check with us first. 
 

What does this mean for your schooling?

As you probably know, I’m a student in the interfaith ordination program at the Chaplaincy Institute. Helpfully, the curriculum is self-paced. So I don’t know yet exactly how this will affect my timeline, but the team at ChI (pronounced like the universal energy force) has been very supportive. I had been targeting November 2024 for ordination. I’m not off-track yet, but there’s a pretty good chance it will have to get pushed back. The Gleevec side effects will likely make it tough to get through coursework, and the eventual surgery definitely will.

Has your recent turn towards spirituality been helpful?

I think so. I am very happy to have the support of my ChI community and my Plum Village (Buddhist) community, in addition to everyone else. I also feel it’s easier to sit with mortality because I regularly practice with the Five Remembrances, one of which is “I cannot escape death.”

Does the tumor have a name?

I had considered “Senator Tommy Tumorville” but decided that’s a harsh comparison that would be unfair to the tumor. I’ve settled on Timmy.

So I should be calling your cancer “Timmy?”

If you find it easier to do so, sure. The name is a joke, but then people started using it in conversation with me, and that felt a little weird to be honest, so I’m happy to just call it cancer, because it’s cancer, and not a person or a US Senator (which I suppose is an overlapping category with "person" but they don't always act like it).

Are you okay with jokes about your cancer?

Absolutely. As long as they’re funny.