Updates

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.

FAQ

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.