FIRST, THE LATEST UPDATES…

I went to the emergency room with severe abdominal pain and fatigue in June 2020. Doctors there found a tumor in my mesantery. They ordered additional tests, and found lesions on my liver. After a biopsy an oncologist diagnosed me with Stage 4 Carcinoid Cancer, a neuroendorcine cancer. Carcinoid tumors are rare, with only 27 new cases per million diagnosed every year.

• Surgery was scheduled for late-August. I posted a message to the community at that time - see that message below. Carcinoid cancer carries with it something called carcinoid syndrome, which during surgery can lead to something called carcinoid crisis - which itself sometimes leads to death. I was aware of the risk for this and went into surgery believing just surviving it would be against the odds.

• I had the surgery in August, and (obviously) survived. They found that my liver had more cancer than the scans had shown, and the tumor itself was inoperable. They were able to resect some of the cancer in my small intestine, but by then it had metastasized to my lymph nodes.

• The average age in which people are typically diagnosed with this type of cancer is a solid 15-20 years older than I am now. My surgeon tells me that they typically see my level of cancer in patients nearly twice my age, and it’s likely I’ve had it for more than a decade.

• I currently take an injection of Octeotride every four weeks. It is intended to slow the growth of tumors. It doesn’t work for everyone, but for those for whom it works, it can lengthen lifespans.

• While the injection may slow the growth of tumors, it likely won’t slow the spread of them to more distant parts of my body. My oncologist says that the prognosis is difficult to call: if the cancer continues to spread slowly and to less-essential organs, I could have several years. If it spreads to my heart, it could be over in a matter of weeks. “Your cancer… it’s everywhere, and nobody knows where it’s going next,” he tells me. (I will have MRI scans every three months for the rest of my life to try to determine where it’s headed, and how fast…)

• NEW! In November I went to Boston to visit one of the top cancer centers in the nation and got the proverbial ‘second opinion.’ Dana-Farber specializes in the type of cancer I have, among others, and they are doing experimental treatments with it that I hoped I would be considered for. The oncologist I met with told me that, in his opinion, everything that could be done back home was being done, but they would present my case to their entire team at a ‘tumor board’ and contact me. Two weeks later I heard from an oncological surgeon, a Harvard graduate who specializes in NET surgery. He had me come back to Boston for some CT scans, and reviewed those. His opinion was that any further surgeries carried with them the potential for high-risk complications, and that any surgery that he could do would be “incompatible with life.”

• I have the same kind of cancer as former Apple CEO Steve Jobs, neuroendocrine. His started in his pancreas and metastasized to his liver; mine originated in my gastrointestinal tract and did the same. He survived eight years from diagnosis to death. He also self-funded a liver transplant, which probably won’t be an option for me.

The support of this community through all of this has been nothing short of humbling - you can read more about that below. For those who are following along, I’ll continue to post any updates here, with bullet points at the top and more detailed information down below.

Thank you for your continued support!

I started blogging at Abysitter.blogspot.com in 2008.

At the time my reason was simple: rumors had been spreading that most of the few websites that ABDLs could congregate were at risk of shutting down, each for various reasons.

Simply put: I didn’t want to lose the connections I had made.

I wanted a space people would remember. One they might eventually find their way back to should the last of our limited online networking opportunities fold at once. So I reserved the domain name I was using for my Aby.com username at the time - Abysitter - and started a Blogger blog, pointing the domain to the blog.

People would remember “Abysitter.com” if all the sites shut down, right?

I started my blog off by writing out a story or two. I didn’t know if anyone else would even read them. But I found that I enjoyed telling the stories. So I kept doing it.

Imagine my excitement when I saw the page view counter jump ahead by two, and realized that someone besides me was reading my blog?

Then, days later, I got my first comment.

Score!!

Eventually members of the ABDL community began submitting pictures to use in my posts.

Later, I would get my first-ever ‘guest entry’ offer - someone else wanted to write for my blog, too!

There was, at that time, no Tumblr, no ABDL Twitter. FetLife wasn’t really being adopted by ABDLs yet. We were compartmentalized on our ABDL sites - nearly all of which seemed to be in danger of running out of funding from month to month - so if you wanted to share more of yourself than you could in a bio or a forum post, there was now a place to do it: Abysitter.com.

And share, many of you did.

By 2011 my blog was getting 150-250 readers every day. It had become a place where members of the community knew they could turn for a variety of ABDL-related content. Stories, pictures, guest entries, commentary, and more.

And I started to discover around that same time that it was more than just the content that people were tuning in for - they were tuning in because they trusted me.

When a debate raged over 18+ on one ABDL website’s forums, one of the site owners asked me to come in and give my opinion.

When people were being taken to task for supporting the Race Car diaper and its pedomarketing strategy, a number of people asked me to publicly take a stand.

When a now-defunct ABDL diaper company wasn’t delivering product it had taken orders for, and wouldn’t even respond to inquiries, consumers emailed me asking for help.

I was no longer just someone sharing stories to entertain people… I’d become, to at least some members of the community, someone they trusted.

Through the years that trust only became more apparent. I began to get messages, via email and texts, from members of the community struggling in their personal lives. Some of these came as random get-this-off-my-chest messages, but there were 3 a.m. texts, and even actual phone calls, from distressed kids dealing with some of the vilest shit our community has to offer.

Controlling diaper daddies threatening blackmail? Check.

Pictures leaked on the internet, or sent to family/friends? Check.

Rape? Check.

Cliques in their city freezing them out? Check. Check. Check.

That some of those calls came to me, who most of the ABDLs I was speaking with had never spoken to and only gotten to know through the reading of blog entries? That meant a lot.

I’ve been asked to appear on talk shows both here in the US and internationally through the years. There aren’t a lot of people trying to find answers to the why are we the way we are? question, so when people both inside the community and outside of it are looking for information, they’d sometimes stumble across my blog, or my Twitter account, and hit me up.

I’ve never done any media appearances, but I’ve linked producers, researchers, and other vanillas to helpful resources several times, like the works of Dr. Rhoda, or some of the ABDL community surveys that have been done as academic assignments more times than I can count.

And for every message I’ve received from someone outside of the community, I probably get a couple dozen from people within it who are struggling with their ABDL side. Some of them are struggling mightily.

I’ve talked to people who created fake accounts just to send me a message and ask questions about this side of themselves. And I’ve talked in depth with some of the most prolific and popular Tumblr and Twitter personalities whose content constantly increases community pride - they seem so confident to all of us, even as they face internal shame, self-doubt, and worse…

So many of us, no matter how confident we appear in this side of ourselves to others, have a real anxiety around our ABDL side. Some of us have guilt or shame - and sometimes it’s intense. The ‘binge/purge’ cycle isn’t a myth - it’s very real, and it affects so many of us.

And in those purge moments, we often ask ourselves why we’re like this.

I’ve been working all these years to find out.

When I put out the ‘Origins of ABDL’ survey in early 2018, over 1,600 of you took it. It was an extensive effort, taking an average of more than 14 minutes to answer, and the answers you gave were sometimes intense. So personal were the stories you shared with me that I often had to stop reading, close my MacBook, and walk away for a bit. Our community has been through some shit, and the fact that so many of you trusted me with such personal accounts of your ABDL lives was not lost on me - not one bit.

At CAPCON 2018 I lead a class discussion on the ‘Origins of ABDL’, discussing the overall results of the survey. That same weekend we celebrated my blog’s millionth page view. (I still remembered how excited I got when I got a second page view in a day like it was yesterday, and now we were at one million!)

I have put a lot of work into this blog over the years. And I put a lot of work into that survey. It paid off that weekend at CAPCON 2018… it was a homecoming of sorts for me. It wasn’t just being invited to lead a class, or even the blog’s view count that did it - it was all of the interactions that I had with people at CAPCON that year.

Someone who’d come to my class told me before the class started that he’d actually flown to Chicago and attended the event because of the class. He was a long-time reader, he said. He told me after the class he hadn’t even known he was talking to me at the time, and only realized when I stood up to lead the discussion.

Another person lurked around me for a bit, and then finally approached me to share with me how one of the entries on the blog had changed the way he thought about himself, and how that thought change had changed his life. He was teary-eyed and choked up, and I won’t lie - by the end of our conversation, so was I.

And, after my class, so many attendees stayed to talk - some for more than 90 minutes. It was one of the most interesting conversations I’ve ever been part of, and the fact that it centered around work that I’d done on my blog - I was on a high that whole weekend.

And all throughout the weekend people came up to me over and over just wanting to share how things they’d read on the blog through the years had meant something to them.

It was one of the most amazing weekends of my life.

THE LUVS BOAT & BUILDING A COMMUNITY

In my former community I struggled to connect with local ABDLs. I was running a popular ABDL blog and being contacted by ABDLs from across the country and around the world, but breaking through the ‘clique’ mentality, especially with the control exerted on others by some of the regional diaper daddies, seemed to be a monumental challenge - so much so that I eventually gave up on meeting locals and stuck to out-of-state visitors to the city as a rule.

In 2016 I left all of that behind, returning to New York and buying a cabin cruiser with the intent of living aboard at least six months out of the year. I was definitely sad to leave a place where so many ABDLs visited every year, and wondered if I’d meet anyone here. I had no idea what was in store for me in my new home…

In addition to experiencing it firsthand I’ve been the recipient of way too many messages of from people around the world who aren’t fitting in within our community over the years. Some admit that they struggle to fit in in vanilla life, as well, and are just looking for tips and advice. Others come from areas where ‘daddies’ (or others) act as ‘gatekeepers’, essentially conspiring to keep outsiders - well, out. Our community has way too much of that, and my friends know I’m still a little bitter about it. If you’ve read my blog over the years you know that I’ve taken several opportunities to rail against ‘cliques’ and praise independent ABDLs.

That’s why I am especially proud that, in the years since I bought the boat, we’ve created a community from scratch: more than 30 ABDLs have visited the ‘Luvs Boat’ since 2016, most of them more than once. Some of them have become ‘regulars’. And I consider all of them my friends.

It all started small enough, with my inviting an ABDL from a local college to visit for the weekend. I must have apologized for the fact that I lived on a boat a hundred times. “No, it’s actually pretty cool,” he told me over and over. And, indeed, we found that being diapered in a floating bedroom wasn’t that much different from being diapered on land...

A second ABDL would visit later that fall, and very excitedly describe how much he thought I should just turn the salon into a big playpen. He was mostly being silly - that wasn’t practical, I told him - but his ideas got my mind working, and by summer 2017 I was planning sitting sessions and ABDL-themed get-togethers.

My first two get-togethers attracted zero people. I’d taken both weekends off for nothing, just a whole bunch of flakes and no-shows. But I didn’t give up, and by weekend #3 nearly everyone who was invited showed: seven ABDLs at once on the boat - more local ABDLs at one time than I’d met in all nine years I’d lived in my old city!

I also tried my hand at being a ‘daddy’ that year. I was loathe for so long to let anyone ever call me that - this means I am ‘daddy age’, right? fuck! - but one little insisted - “let’s do the math on this, Cwis…” - and I reluctantly agreed. And, to my surprise, I found that I love, love, loved taking on that role. I of course stuck with the abysitter handle - and to abysitting, for the most part - but for the first time that year I began to realize that I wanted something mor than just the title of ‘sitter’ or ‘big bro’.

For 2018 I was even more determined to community build - and we began to build experiences, too. The master stateroom became a ‘nursery’ of sorts, complete with a toddler rail, whale-themed crib liner and mobile, and as many oceanic plushies as we could find. I added a toy chest and stocked it with nautical-themed toys and games, later adding gifts from our ‘Luvs Boat’ regulars. I reached out to ABDLs in far-off places who just seemed chill, and responded to a lot of inquiries that spring, as well. We wound up having additional visitors from Florida, Washington, Iowa, and New York City, and made a ton of memories for a lot of people in the process.

The next year would be the year we’d finally take the boat out on the water for the first time as a group. Going out onto the water, where 50+ square miles of lake surface area provided us with a level of privacy we’d never find in the marina, allowed us to pad up and strip down to diapers.

If you’ve seen the pictures of the LuvsBoat out to sea featured in the Luvs Boat video you’re seeing us out in the middle of the lake with other boats almost never in sight. There is something absolutely freeing about just being able to put all of your inhibitions and anxieties aside and just be you.

For me, our cruises completely changed the ‘Luvs Boat’ experience, just as hosting get-togethers on the boat had changed my experience as an ABDL.

Then COVID-19 came in 2020. It somehow spared CAPCON, giving us one amazing event that year - Tyson and I spent an entire week in Chicago and it was magical. We were still headed into planning for boating season days later when it began to become clear that this season would be like none other before.

I’d spent the entire winter stocking up on diapers, adding to the plushie collection, and buying new toys, games, and books - we’d even added a nautical littles-wear ensemble and an ABDL burgee flag! But 2020 would not be the year for the #LuvsBoat. (Or, really, for much else in the ABDL community.) Between quarantine rules and COVID restrictions, having out-of-town guests would be impossible.

I’d been a blogger for many years, regaling interested members of the ABDL community with tales of my pampz-for-pay exploits and babysitting sessions.

But from 2016 on I have been the captain of the ‘Luvs Boat’, offering ABDLs lucky enough to live in the vicinity (or willing to travel) a place to strip down, pad up, and just be themselves out on the water.

And, judging from the nearly 50,000 views on the ‘Luvs Boat’ YouTube video - and messages from dozens of members of the community since it was pubilshed - a place that ABDL dreams are made of.

Between visitors to my former city and attending CAPCON, I’d met dozens of ABDLs through the years.

But creating a community just… hits different.

And forming one that is actually welcoming, filled with nice people who treat new people like they belong? It’s hard to describe how rewarding being a part of that is.

I truly wish every person in our community could have the experiences we’ve been fortunate enough to have.

HEALTH ISSUES

(If you’ve read this far, you’re one of the real ones…)

In June I went to the emergency room after several days of the worst exhaustion and dizziness I have ever experienced turned into severe stomach pain and some other symptoms. They ran a battery of tests before coming back to tell me they had found some kind of a tumor inside my digestive tract.

I had a consultation with a surgeon later that week, and he informed me that the tumor they had found was in an area surrounded by blood vessels and an artery. It was too complicated for the surgery to take place in the city where I live.

He also told me that I had lesions on my liver, as well, and those would need to be tested first to see if they were related to the tumor.

After the liver biopsy results came back I was informed that the tumor in my digestive tract had metastasized to my liver. A consultation with a surgeon in another city specializing in neuroendrocrine cancer was set up. I met with her last month, and she told me that I had been diagnosed with Stage IV carcinoid cancer, and that while it had spread to my digestive tract and liver it had likely originated in another organ. More tests were set up to determine the source.

Carcinoid cancer is rare. Carcinoid cancer that has mestasticized to the liver is rarer, still. And the average age at diagnosis is over 60, making me quite young for this type of cancer. Or, in the words of my oncologist: “very weird. Not unheard of. But very weird.”

The prognosis for my type of cancer is dependent on how far it has spread. In my case, it has already spread a lot. Still, it’s a slow-moving cancer, and there’s no set timeframe in which it could worsen, etc.

There is no ‘cure’, per se, and the only treatment for cancer this advanced is to literally cut it out. So, this Tuesday, if all goes well, that is what they plan to do.

As of right now it looks like the surgery on the tumor could be difficult, but my surgeon seems very positive about that part and says that, while there are certainly risks, she has performed similar surgeries successfully before.

The second area of surgery, though, involves the removal of part of an organ. I am told that it is a major procedure. If things go well, they expect me to be hospitalized for about a week, and in recovery at home for 4 - 6 weeks.

It is unlikely that my life will be quite the same afterward.

That’s if things go well. If they take too little out during surgery the cancer will remain or come back. If they take too much, the rest of my life could be filled with major medical complications. And because they really aren’t able to determine how far the cancer has spread until they actually do the surgery, they sometimes can’t decide whether to even go through with the surgery until they’re already in there…

In cases where the cancer has spread to the point that mine has, it is often deemed inoperable. According to the {Edited} Cancer Foundation, “older statistics show that approximately one half of patients survive an average of 5 years. Since various types of treatment have been introduced in the past decade patients appear to have an even longer survival and improved quality of life.” The American Cancer Society statistics show a survival rate of 67%, but say those odds are getting better all the time.

Those aren’t great odds - but it could be way, way worse. And they are working to make it better every day.

Still, the surgery itself is considered to be somewhat high-risk because, in addition to the proximity of blood vessels/arteries, something called ‘carcinoid crisis’ can occur with this type of cancer. To really simplify it, this is where your body can’t handle suddenly being ‘fixed’ and essentially sends you into shock. It can be, and often is, fatal. This phenomenon is somewhat rare, because the liver generally helps prevent this. My liver already being cancerous, though, could result in it not doing an adequate job. I’ve been taking injections of a medication that, in addition to decreasing tumor size and slowing the spread of the cancer, should help ready my body for surgery and, hopefully, stave off any ‘crisis’. Still, because of the risks, as well as other risks presented to me by the anesthesiology team, I am more than a little nervous.

I informed my family and friends of my diagnosis almost immediately. Cancer is one of the major risk factors for COVID, and I needed to make sure that my vanilla friends, who had become used to taking over the boat on any weekends my ABDL friends don’t, gave me some space this year.

Then I began the process of notifying some of the ABDLs who are in my life on a constant basis. The ones that I have regular phone calls and FaceTimes with. (Most of them are friends with me on vanilla Facebook, so they already knew).

Over time I added to that little by little, telling former boat visitors (and even some future boat visitors).

Today, in the days before my surgery, I’m sharing the news with everyone.

My family has been supportive beyond belief. They have dropped everything to provide rides and, where COVID rules allow, accompaniment to medical appointments and procedures that seem to take place with alarming regularity. I think I have no fewer than five church congregations praying for me, despite not being particularly religious myself.

Vanilla friends, too, have stepped up so much since my diagnosis. From an old friend from high school and his son coming to have weekly take-out dinners with me on the boat, to a former co-worker getting my groceries and medication for me so I don’t have to go to the store, to a buddy coming to sit with me every few days just to talk…

My marina fam, too, couldn’t be more helpful. They’ve taken on roles: one texts me every few days to see what she can get me at the store… another offered to take care of the flowers that I’ve planted that line the dock, and had already began watering and pruning them weeks ago… and yet another will be the ‘storm checker’, securing the lines before and after any big storms.

All of this I probably should have anticipated. I make it a point to surround myself with nice people.

What has amazed me more than anything, though, is the number of people in this community who have been more supportive than I could ever have anticipated.

‘Luvs Boat’ regulars have been by my side through it all. Michael and Rob have let me come out to swim in their pool regularly - after hours, to cut down on potential COVID exposure - and they’ve fed me more times than I can count. Matt, Patrick, and Nick have masked up and made visits out to the boat, as well - some padded, some not.

But it goes even beyond all of that.

I’m talking frequent check-ins across every social platform I have. I go to sleep feeling good because a little somewhere out there wants to know how my day went, and wake up to messages from community members asking how I’m holding up…

I get multiple messages on Facebook a day, and so many Telegram messages oh my GOD. Sometimes I’m too exhausted to respond right away, but I see them and reply when I can. But boy, do they make me feel good.

To those of you who have been a part of that… thank you.

In addition to daily check-ins, a few people have, in total seriousness, offered to drop everything and come straight to where I am to try to help.

Littles I’ve known for years, and ones I’ve never actually met in person yet, have made very real offers to come to New York.

“I’m not going to let them cath you in the hospital, Cwis,” one friend vowed after asking me to check into visitation rules at the hospital I’ll have the procedure at. “I’ll stand guard at your bedside… diapers only for this patient.”

A longtime friend who’s spent a lot of time with me through the years offered unlimited diaper changes during the weeks after my recovery, as well. “You’re not going to want to do that yourself… and you’ve changed enough of mine...”

And one little friend with a bit of a medical background even offered to cash in airline miles to buy a ticket to help me during the recovery, suggesting that his medical experience could be of service.

“It’s not like we have a lot going on lately,” he told me. “Let me do this for you.”

“You’ve taken care of littles for a long time, Cwis,” someone said on Snapchat. “Now it’s time to let some of us take care of you.”

The idea of people willing to fly here to assist me? I can’t begin to tell you what that kind of stuff means to me…

And were it not for COVID-19 and the need for me to totally quarantine between now and the surgery, you should know that I would have excitedly welcomed a fucking parade of ABDL visitors here already.

Were there no virus, every weekend between my diagnosis and my surgery would have been a #LuvsBoat weekend.

We’d have voyaged to part of the lake we’ve never seen, and done things we haven’t done before - bucket list type shit. Like spend the night diapered out at anchor. Get some incredible padded drone footage. Get Tyson up here with his jet skis for some padded roaring around.

Even on the weekends I’ve been too tired to get out of bed, I would’ve dragged my tired ass into the cuddle cabin and just cuddled, maybe just swapping stories until I fell back asleep.

Nothing would have made me happier.

Unfortunately, that wasn’t the reality for 2020. I happened to have been diagnosed with cancer during a time when the disease literally makes you more of a risk for adverse affects of COVID-19.

So, in a way, the kindest thing many of my friends in our community did for me was to not come, this year.

As much as I have missed so many of them.

I can’t wait for this Coronavirus shit to end, because I can’t wait to see so many of you.

Old friends… new fans of the Luvs Boat I look forward to becoming friends in the very near future… so many of you.

Presuming I make it through surgery and they come out with a COVID vaccine, it’s on next year.

#LuvsBoat2021. You heard it here first.

Regardless of the risks on Tuesday, I have real confidence in my doctor, and I fully expect to make it through surgery, recover, and be back to blogging, Tumbling, and tweeting in no time.

If all goes well, it should just be a matter of days. So get those half-done Q&A’s finished… I’ll be coming for them!

But I know people who have gone into surgeries that were probably less risky than this one not really acknowledging the realities of what could occur. People who failed to make it through surgery and, because not making it through was so ‘unexpected’, didn’t have a chance to say goodbye.

So I want you to know that, in the unlikely event that I am not one of the lucky ones where surgery is concerned, I feel so, so fortunate to have been one of the lucky ones where this community is concerned.

Some of us take our community for granted. I am certainly guilty of that at times, myself.

Get diagnosed with a serious illness, however, and you will get a very real sense, very quickly, of how important this community is, both to yourself and to the other people within it who you care about.

For many people in it, this community is as important to us as anyone or anything ‘vanilla’ will ever be. People we’ve met from the ABDL community often comprise some of our closest friends. Our partners. Our ‘families’.

I am definitely one of them. I don’t know where I’d be without it.

And nothing has made me realize that more than this illness.

I have been blogging since 2008. During those years, I’ve lost count of the people who have reached out to let me know how much something they found on the blog means to them.

My stories. Your stories. The e-book. Pictures I’ve taken. Pictures you’ve taken. The photo contest entries. Q & A series questions so many of you have answered. The surveys. The ‘Big Boy Bucket’.

All of it.

Somewhere in the hundreds of blog entries posted over 13 years, some post - whether one of mine or one of yours - meant something significant to someone in the community.

Something I wrote helped a young person on their road to coming to terms with this instinctive need to be diapered.

Something you wrote and contributed to the blog helped someone explain this side of themselves to their partner and may have helped save their relationship.

I’ve heard those exact scenarios. And so many very much like those, over and over...

On top of the content that is publicly available on the blog, I’ve had private communications with many of you about so many important things in your lives, both where this community is concerned and vanilla life as well. Relationships. Academics. Past traumas. Future fears. The information you have trusted me with, and the trust you have put in me overall, continuously amazes me.

No matter what happens on Tuesday, I know, because so many of you have taken the time to let me know, that I’ve made a difference for people in our community.

You should know that I struggle to put into words the difference so many of you have made in mine.

Thank you, each and every one of you, for everything we’ve done together over the years.

They say that in your last seconds your life literally flashes before your eyes. I don’t know if that is true, but if it is I know I will be seeing some of you again in those moments.

Running Abysitter.com, and finding my place in our community, has been one of the greatest privileges of my life.

Hopefully, my life… so far.

Wish me luck, and with any luck I will see you soon...

Love you all,

Cwis

PS: Once again, I fully intend to be able to make a full return to this in the very near future. (In recovery, I’m even hoping to go all out on the WhyABDL.org website - I should have plenty of time to lay in bed and conjure up some content!) I so look forward to my first post-surgery tweet!

But just in case things don’t go that way, know that I have chosen a friend who I’ve asked to take over Abysitter.com, whether it be to continue what we’ve done so far, or even just to maintain it so the information thusfar isn’t lost. He readily agreed. That person will remain unnamed for now, but know that I chose someone who I truly believe cares about our community as much as I do. I trust him - I’d trust him with my life, really. So I am hoping that, should he look to continue what we’ve started, you’ll trust him with your stories, and continue to share them, just as you have with me.

[UPDATED SEPTEMBER 3, 2020] Last week I wrote a post about going in for cancer surgery. As you can see, I made it through surgery. Sunday, my sixth day in the hospital, they discharged me to begin my recovery at home.

They take your phone away at the hospital at first, probably to prevent ‘anesthesia texts’ - they’re like drunk texts, only less intelligible - and once you get it back, just holding it at FaceTime height for longer then a few minutes proves to be a monumental quest.

As soon as I got it back I tweeted an update and posted to my personal (vanilla) Facebook. I also replied to some emails in the order that they’d come in.

Mostly, I just slept. And began to heal.

I’d hoped to post updates across platforms, but due to visiting restrictions I was unable to get my computer in the hospital for the entire six days I was there - the people I’d left it with weren’t able to get in to get it to me. For anyone who didn’t catch what I posted in other places or get a personal response from me, I’m very sorry to have kept you waiting. But I’m okay.

For anyone just looking for the quick update, that was it.

For anyone looking for a more in-depth analysis, keep reading.

With regard to the cancer, there’s good news and bad news.

The good news is that I survived the surgery and tolerated the anesthesia well.

The bad news is that once they got inside they determined that the tumor in my digestive tract is actually inoperable. Removing it would cut off critical blood flow to another organ. They spent hours trying different things, but nothing worked, and so it remains, mostly intact, save for a tiny sample they took for more complete testing.

In addition, the nature of the cancer within my small intestine was such that, while they were able to perform surgery they feel will make digestion easier, they can say that cancer still remains, and will remain. Removing all of it, because of where it is positioned, would have required removing too much of that organ to allow normal digestion, and could have other complications for the remainder of my life. Since they can’t remove the cancer entirely from other areas, anyway, that wouldn’t make sense: I’d be left with cancer and major health problems, too.

Finally, the liver. They’d added that as a possibility at the last minute. Once they got in, they saw that it has not one, but two areas with cancerous lesions. One did not show up on the scan from a few weeks ago. Did the scan miss it? Is it spreading that fast? They’re not sure, but it’s not worth operating on, at this time, if the rest of the cancer can’t be removed.

As someone who was concerned that he might not survive the anesthesia - my biggest worry had actually been going into a special type of shock associated with my specific cancer during surgery - I was honestly just happy to wake up.

I was even happier to wake up to the news that I won’t need a feeding tube for the rest of my life. So there are some silver linings.

But I still have cancer.

I knew going into this that the outcome we got would be the likely outcome. I wasn’t taken by surprise. I’d read up on this, a lot, before going in. I knew the kind of cancer I have. I knew that it’s normally diagnosed nearly 20 years later in other people who have it. And I knew that it had already spread to several areas, including the liver. A clean sweep would have been a miracle, honestly. I was just hoping for better chances.

Statistics show that people surviving 5+ years with the type/stage cancer I have is 50-65%, but those numbers improve year over year. My doctor acknowledges that my tumor placement means it’s likely a matter of years for me, but she has anecdotal evidence of a similar patient living 9 years so far following a similar attempt at surgery. If I beat those odds, odds are I’ll become the next patient she talks about. Her job seems to be to inspire me and to give me hope. She spent a lot of this past week in my hospital room trying to do that.

Next steps: We will continue with the special shots that have been shown to slow the growth of, and reduce the size of, these types of tumors. And, as I continue to recover, my case will go to the tumor board to determine what we might get into next. Chemotherapy? Experimental treatments? Trials? Is there anything else we can try?

I should know more options within a few weeks. And once they’ve had enough time to do a new scan and compare, they may have more information on the actual prognosis.

No matter what that is, the outpouring of support from this community in response to my previous announcement has been nothing short of amazing. I received so many email messages I was still replying to them when they took my laptop in the surgical prep area. Dozens upon dozens of DMs on Twitter. Tumblr messages. ABU sent me a message to let me know a ‘Get Well Soon’ package is on the way - I read that literally minutes before they took my phone and wheeled me into the operating room, and I can’t tell you what it meant. I just hoped I’d be receiving it, and not my next-of-kin!

Our community is so. fucking. amazing. And as someone who believed that there was a real shot that he might not be coming out of surgery, I’m just happy to be able to continue to be a part of it. Your messages - many of which I’m still trying to get back to - made me realize, even more than you know I already did, how awesome this community is.

PUPPY

A few weeks ago my family took me out to a farm and introduced me to a litter of adorable West Highland White Terrier puppies.

I’d long since considered adopting a dog. Some of you know I did a stint as a chicken dad this past spring after COVID closed schools here and dozens of baby chicks suddenly needed homes - and found I actually missed them when they went back to the chicken co-op.

My family asked me if I wanted one. “A therapy dog, to aid in your recovery,” they said.

I’d been very clear with them what I believed the outcome of this surgery to be - I’d even prepared a sealed envelope with final instructions, just in case. Only after my brother pledged to be the Plan B, if needed, did I agree.

Some people might say that the day before a major surgery isn’t the best time to pick up a new puppy. I was one of those people. I suspect that my family thought that I’d be more likely to fight to survive if I had a puppy waiting for me, but I don’t know. All I know is that, as I sit here typing this message, in what will likely be the first days of months of recovery, my new Westie puppy, who I got to spend the day before my operation and hoped I’d see again after, sits on the floor by my feet.

You’ll probably spot her in some Luvs Boat pictures soon enough.

BLOGGING SOON…

I’d like to say that I’ll be blogging up a storm during my time recovering at home, but that’s likely not going to be the case for a bit.

Even with all of the surgery they couldn’t do, this was a major procedure. The nurses reminded me of that every day. “Push your pain button, you had a major procedure.” “Don’t try to get up so fast, you had a major procedure.”

The recovery is going to be plodding. I can’t bend over. I can’t lift anything heavier than a two-gallon jug of milk. Just staying focused on what’s going on in the room is a challenge. For the time being, I pick my phone up, answer some messages, and put it down for an hour. I finally have my laptop, and it’s taken me all day to write this, in four different spurts.

This will, of course, get easier over time. And I will make a return to the community - probably slowly, over time, and a little less on some platforms than others.

For now, keep emailing your well wishes, and if you have guest entry ideas or Q&A’s you want to contribute by all means, email away… just don’t expect an immediate response.

And if you were one of the people who reached out to me, anywhere, as I went into surgery - or during my time in the hospital - I can’t thank you enough. I wish I could post a blog entry and just show all of the messages, because just seeing stuff like that would fill almost anyone in our community with a sense of pride.

[POSTED SEPTEMBER 18… UPDATED WITH NEW INFORMATION OCTOBER 1] It took me five days before I had the courage to lift up my hospital gown and actually look at the incision running down the front of my body.

Five days.

I saw the looks on the faces of the residents who came by my room to check on it every day. Five or six of them would stand at the foot of my bed, in a semicircle, while the one who seemed to be in charge gingerly lifted my gown. Their expressions could probably best be described as a mixture of surprise and dismay. From that I gathered that the incision was long - surprisingly long, I imagined. I wasn’t in a hurry to see it for myself, and were it not for an accidental turn during a shower I probably would have gone longer.

I winced when I looked at it, and in my mind was transported back to the New York State Thruway, October 2019. Or October 2017. Both times, a little who is very special to me had ridden next to me in the car - in the passenger seat of my car, first, and later in the driver’s seat of his own vehicle. On both occasions he’d put his hand beneath my shirt and rubbed my tummy and my chest. Relaxed doesn’t even begin to describe how that made me feel. Our trip last year had been 2.5 hours each way, and I’d actually fallen asleep during the ride, lulled by the gentleness of his driving and the caring way he ran his hand up and down my tummy.

Who would want to put their hand there now?

Each time I washed my incision in the shower at the hospital, and later in the shower at home, I could only shake my head. I knew that the incision would eventually heal, turning into a scar. A long scar from my chest to my belly button. It would, eventually, look better. But it would always be there. I ran my own hand up and down it, and it didn’t feel good. Damn… if I could barely handle it, what hope did I have for anyone else?

I had to remind myself that I am lucky to be alive. I may have to settle for memories. And that’s okay.

Recovery since leaving the hospital has not been easy.

On the one hand, the surgeons were only able to do 1/3 of the actual surgery they had planned. In some ways, then, I’ve recovered quicker than expected.

On the other hand, I had a major procedure. The incision is huge, and I’ve been reminded over and over not to “overdo it” - no lifting anything heavier than a milk jug, no bending, no picking things up off the floor, no pulling.

I spent two weeks convalescing at my parents’, with family and friends doing nearly everything for me.

I finally moved back to the boat.

I’ve been very lucky, in that several of my friends (hey Mike & Rob) took care of things while I was away, stopping by to check on the boat a few times a week and even spraying for spiders the night before I (and my new puppy) returned.

But living on a boat by yourself when you’re not supposed to lift over 10 lbs. is a challenge…

I was on the boat this past Friday when my surgeon’s office called me. They wanted me to have some information before it was published in the ‘patient portal’, an app with patient information. They let me know that, in addition to the cancer in my small intestine that could only be half resected… and the tumor that turned out to be inoperable… and the cancer in my liver that turned out to be twice as much as the scans had showed… they’d actually found that, if they’d removed the tumor, the blood supply would be cut off to my colon. Since I was left with so much cancer in so many other places, that wouldn’t have made sense. But they wanted me to know.

What I understand so far is that the average age in which people are typically - typically - diagnosed with this cancer is a solid 15-20 years older than I am now. And it’s supposed to be a slow-moving cancer - yet somehow it’s managed to move to nearly everywhere in my body. My surgeon says it’s “incredibly advanced” - and that they usually see it at this levels in patients who are in their mid 80s…

Now, my surgeon tells me, it’s in my lymph nodes. Something about my blood supply, and where it metastasizes to is anyone’s guess.

What the fuck?

The good news is that, before the shots that I’m now taking monthly for the rest of my life, the average lifespan for someone with a failed surgery such as mine was just two years. Now, with the shots, it’s eight.

And while it’s unlikely that I, diagnosed 15-20 years earlier than most, with cancer all over my body, will be in the longer range, there’s always that hope.

Stay tuned for more… and for everyone who has reached out to me so far, once again… thank you, thank you, thank you. I love this community.

I mentioned before that I’d been told I’d be getting a ‘care package’ from the team at ABUniverse. It arrived the weekend I relocated to the boat, and I can’t thank them enough! In addition to an awesome note, I got a mixed case of diapers, a t-shirt, and a ton of diaper stickers! Best of all, they wrote some motivational artwork on the inside of the box! I’ll post a few more pics here soon, but wanted to include this in my ‘updates’, because it meant the world to me. Thanks to everyone at ABU!

Turns out I have the same cancer Steve Jobs had, Neuroendocrine. His was pancreas-based, whereas mine originated in my small intestine/liver/etc. My surgeon says I’ve had it for over 10 years and it’s usually seen at this degree in people who are in their 80s. The oncologist basically says he’s hopeful for a couple of years, but if it metastasizes to my heart it will be a couple of weeks. It could go anywhere, and “it’s already everywhere!“ it literally depends on where it travels next. The good news is they are doing research all the time so they could come out with some new medication that’s even more effective than the shots I’ve been taking... those won’t stop the spread but they do slow things down once it gets to wherever it’s going. I have an MRI tomorrow, and that will give them a baseline, and then every three months from now on they’ll do a new one to see where it’s spreading to. I am out of work from this point forward unless they come up with a miracle cure, my cancer is one of the automatic approval ones for Social Security disability. I’m hoping to have time to write a novel or something.