Updates - Spring 2022
It’s launch time and the ‘Luvs Boat’ should be afloat during the next few weeks.
In 2020 I was in bed (on the boat) for weeks, awaiting surgery, and we were all quarantining, so I saw only my most die-hard boating friends. In 2021 things were getting back to normal, but we limited visitors to people I knew would be taking COVID precautions - no new people that year.
In 2022, with things even more ‘back to normal’ and those of us who are vaccinated appearing to be immune from serious complications from COVID, I am hoping to make a few new friends. Maybe have some visitors from afar.
Nothing crazy, but I’m building a little invite list.
If you live in upstate New York, or will be visiting the area between May and October of this year, email me.
ROAD TRIPS
I’m also building a little contact list for future road trips… scroll to the bottom of this email to read more.
In 2021 I acquired a Tesla Model 3. It’s the entry-level EV from Tesla, but I absolutely love it. What I love most is being able to take road trips on the cheap, criss-crossing the country and mainly charging (for free) at campsites as I go.
I have a huge hook-on tent that clips to the back, but I much prefer sleeping in the car - they call that Teslacamping. So far in 2022 I have spent the night in my little sleeping pod nearly 30 nights. (I’ve been on the road for almost 40, but health conditions and weather have necessitated some hotel and homestays).
Those of you who have been with me for a while have probably seen the road trip I took with Ben in June of last year. That trip was so amazing, but too short. This past January I traveled solo from my home in New York state down the Atlantic coast to spend some time in the Outer Banks, in South Carolina, an overnight in Georgia, and a week in Florida, including two nights in Key West. What a trip! Earlier this month I took a trip to Virginia, North Carolina, and a little bit into Tennessee to drive Skyline Drive, the Blue Ridge Parkway, and Tail of the Dragon. Talk about beautiful.
Each trip has been a padded road trip - I’ve been diapered nearly 100% of the time, with a few exceptions. I will say that wearing diapers while driving 5,000 miles in January made that trip a lot easier - and a bit more fun - but wearing them on the Blue Ridge Parkway was an absolute necessity - the rest areas are mostly closed this time of year, some of the port-a-loos were overflowing, and the Appalachian Trail hikers just pee and poo in the woods so many folks visiting in their cars do that, too. Diapers! Don’t go on a road trip or hike the trails without them.
Still, it wasn’t as fun without Ben - two diaperboys on the road makes it an adventure! I did get to see a friend (and repeat boat visitor) while I was in Miami, so that was cool. And I had plans to visit some ABDL friends in NC on the way back up, but the January COVID outbreak ruined that. And I couldn’t find the contact info of two in Florida I’d hoped to see when I was there. A little from inland NC offered to drive out to the Outer Banks for an overnight and I have been kicking myself ever since for not taking him up on it.
Ben’s talked about coming back for a re-attempt at our Great Lakes Road Trip - you might remember that the first edition got shortened after some joyriders in a parking lot caused $6K in damage to the car. LittleBroTyTy would like to go on an adventure with me this year, too. And, as I do a few into neighboring states over the summer, I may have other friends ask to join. Maybe I’ll even bring the tent on a few and have some padded sleeping under the stars with a gaggle of littles. A few friends have brought up a group road trip plan. For now, I’m just loving every minute of the drives, and trying to make every day as experienced-filled as possible, wet, damp, or dry.
CANCER
You may remember that, in June of 2020 I was diagnosed with Stage IV neuroendocrine cancer. I had surgery - one I was afraid I may not make it out of - and while the most serious of the tumors was inoperable and my surgeon abandoned surgery on my liver (for the time being) to avoid more serious complications, the surgery did help alleviate some of the symptoms of the disease.
Since then I’ve had a monthly ‘chemo’ injection, and scans every 3-4 months to keep an eye on the tumors - are they growing, spreading?
I get questions about my cancer a lot, and I appreciate it every time. Sometimes it’s hard to update immediately, and my answers may be a bit simplistic at times, especially during the periods of time where I haven’t known myself and am anxiously awaiting the next scan. Still, the first 15 months following surgery went fairly smoothly, save for a need for iron infusions when I turned out to be very anemic due to a reduced ability to absorb iron - likely caused by the medication. A bit more detailed info on recent difficulties follows - skip to the next subject header if you don’t want to hear…
After my January road trip I returned and reported that my symptoms were worsening. My oncology team watches for signs of more than just scans showing tumor growth, as this is a type of cancer that is slow-growing but can cause many other issues that don’t show up on the scans.
Another problem that arose was that my blood pressure suddenly spiked, and medication wouldn’t bring it down. My oncologist was concerned that the monthly dose was the direct cause of the increased hypertension - he’d doubled my dose back in December to increase the effects of the drug, and thought that it might be too much. They decided to stop the cancer treatments for three weeks, to monitor things. My blood pressure improved and the symptoms didn’t get too much worse, so they sent me off on my road trip after a halved dose.
Symptoms during the last road trip were not good at all, and upon my return it was decided that the double dose would be the norm going forward. Things have improved since then, but my BP is higher again. Some patients have to stop taking the drug altogether because of its side effects, and they are investigating a different drug - there are only two that work for my kind of cancer - and some additional medication that is apparently so expensive they fully expect to have to fight my insurer to get it approved, and don’t think they will win. (Those of you reading this from Canada, Europe, and other countries with real healthcare… I can’t tell you how lucky you are). I also met with a radiation oncologist, because if they have to stop the shot the next step will be radiation. I’m a little concerned because I clearly remember my surgeon telling me that radiation would be the last-ditch effort step, and they’re talking about it now. But they tell me not to worry. Still no way to really predict.
My next concern will be my scan in June, because stopping the monthly injection typically leads to the cancer spreading within weeks. Was my ‘break’ from the shot long enough to lead to tumor growth? I’ll know in June.
My cancer is one where the prognosis is difficult to determine. I belong to Facebook groups for my specific cancer type, and they’re full of people celebrating milestones - sometimes 9, 10 years! still alive following surgery - but they’re also filled with notifications of the passing of people who seemed healthier than me and hoped to live for years but lived for just a few. One woman who had her surgery the exact same day as I did died one year later; I was celebrating my surgery anniversary and she made it exactly to the anniversary.
I’m hopeful that my scan in June reveals good news and we proceed with whatever the best course of treatment is. But since neuroendocrine cancer is unpredictable, and since the symptoms is causes typically worsen over time, and since it can cause issues that go beyond simple cancer itself - carcinoid syndrome, carcinoid heart disease, and etc. - I’m going to keep trying to fit as much as possible into every day.
Sorry to those who have gotten short, nondescript answers about my cancer - I get the question a few times every week, at least, and sometimes it’s harder to answer than others.
CAPCON, TEDDYCON, ETC.
Hoping to attend CAPCON this year! If so it would be my sixth one. Tyson and I, like most of you who are going, didn’t get a room in the host hotel. (Boo!) We’re hoping things change - you may remember that everyone who was closed out of the host hotel in 2020 eventually got a room if they wanted one. This year does seem to be even more popular than the past, probably because of the many events that have been canceled - CAPCON, TeddyCon, WCJJ, and TomKat just here in the US - so if there’s an event, everyone will jump at the chance to attend. Tyson found a hotel that has suites just down the street, so we may do that and have a little get-together of our own with those who are able to drive… time will tell.
I had considered proposing a class to teach at the con - you may remember I co-lead one on the history of the ABDL internet five years ago, and lead a discussion on the ‘Origins of ABDL’ a year later. I’d love to lead another discussion, because there are a few topics that I think would make a fascinating discussion. Still not sure. My treatment schedule and, sometimes, symptoms could lead to my not being able to attend, and stress leads to increase symptoms so… maybe I’ll leave the classes up to others this year. We’ll see. If you have a good idea for a class that you’d like to attend, I’d love to hear it. If you’re going to CAPCON in July, consider proposing and teaching it! Anyone can do it… trust me…
I will say that I was very unhappy with the way CAPCON went down in 2020, from registration to the hotel booking. I was one of those who provided feedback - privately at first, and then publicly when it appeared that it had fallen on deaf ears. I have to give credit where it’s due: the process this year has been much more transparent and, I have to say, well-organized. Presuming that there is fairness in the way that the rooms are being handed out, most everything this year is an improvement. I see a lot of complaining about delays and dates not met, and I have to say that running an event of this magnitude is a daunting task and not following up on the exact date, while testing the anxiety of those of us who have it, isn’t that remarkable. Everyone just be chill… so far, though, my ABU cap is off to organizers.
As for TeddyCon…
I had never gotten to attend a TeddyCon. I bought tickets several years, but I was always closed out of the host hotel, and like many of you I like having that little escape to duck into during the con. So I just didn’t go. It probably didn’t help that it was the very end of boating season every year, and I had a lot to do, so a con felt like something I just didn’t have time for.
TeddyCon very generously sponsored my photo contest one year, donating a room in the host hotel and a whole bunch of other prizes, and I always appreciated that. I had planned to attend this last one, despite my COVID concerns, and was excited to even get a room in the host hotel last-minute! Woo hoo!
Turned out that was probably because the hotel had just found out the event would be canceled. A day or so later they made the announcement. I was just as surprised as anyone. And I haven’t heard a thing from the organizers since, like everyone else. (Not that I would expect to).
The one thing I want to say is this. In all of the years of my not attending, so many of my community friends reached out to try to convince me to go. Some of y’all LOVED TeddyCon considerably. I’ll be honest when I say I don’t think anyone has every talked to me about CAPCON, or any other con, the way some of you tried to sell me on Teddy. It was small… it was intimate… it was welcoming.
I’ve seen a lot of hate directed toward TeddyCon recently. Much of it is rooted in the disappointment of a chance to be little, and we with accepting friends, pulled out from under us at the last minute. I get that. But speaking as someone who has had a hand in putting on major events - vanilla ones - that stopped with COVID, I can say that when cancellations happen, full refunds - or, sometimes, partial refunds, even - aren’t possible. Much of the money has been spent in the preparation for the event, and it just isn’t there to be returned.
I’m not privy to the books of TeddyCon, and people have said a lot about the way news was communicated, etc. which I can agree with. But for those who were proud of TeddyCon and loved that event with so much passion over the years - I hope you can remember the many good years that it provided. I feel like, without the COVID catastrophe we had this past year, TeddyCon would still be going strong.
SUMMER ROAD TRIPS
Hoping to fit in at least one or two summer road trips this year, in between cancer treatments, boat weekends, and everything else.
One possibility is a Great Lakes Trip: overnights on all five of the Great Lakes: Lake Ontario, Lake Erie, Lake Michigan, Lake Huron, and Lake Superior. If you live on or near the shores of any of these, anywhere (US or Canadian side), and would be interested in meeting if/when I come through, please email me your info, including social profiles.
(That one I may combine with a drive to and from CAPCON in late July/early August.
Another possibility is Maine to Maryland, or possibly even to DC. That would probably occur after CAP, in August. If you live in any of the Atlantic states that would be on that route: Maine, New Hampshire/Vermont, Massachusetts, Connecticut/Rhode Island, NYC, NJ, Delaware, Maryland, Virginia (around DC), or DC… email email me your info, including social profiles?
I’ll be doing a bigger road trip around the entire US once I have my financing straight and if my health holds up, so I will eventually be reaching out to find out what city/states all of my friends are in.
Friends and people I’ve talked with in the past, especially, I’d like to try to meet on these trips.
So hit me up.
FINALLY… FRANCE
Due to relatives spending an extensive amount of time in France, I may be making a visit to Europe this summer or fall.
Not trying to set anything up now until I know for sure. But if you’re a French friend (or on the western border of France, which is the part I’d likely be visiting) holla.
