Here it is at long last, your:

State of the Erfworld Address

 

As always, prepare yourself for a:

 

 

Some years are forgettable. This one was not.

 

Some years just fly right by. This one did not. I'm actually having a hard time believing we are still in the year 2018, that we still have more than a month of it to go.

 

2018 was the year we finished Book 4: Lies and Dolls, and began Book 5: Temple Tantrum.

 

2018 was the year we removed all the ads. We had planned to do so much more with the site in 2018, but we did bring gems and cards and 3D badges and we killed the ads with Mine4Erf.

 

2018 was the year of Free Cards Day, and Free Calendar Month.

 

And of course, 2018 was the year Linda got sick. Then, strike that, it quickly became the year of finding out she had metastatic cancer. It was — for a frigid and terrible springtime — the year of knowing this would probably be the last year Linda ever knew.

 

2018 was the year we went to Colorado to hunt fossils, the year we saw a rocket launch on its way to the international space station, and the year we had great seats to see the Washington Capitals lose to the Tampa Bay Lightning on their way to finally winning (the other) Lord Stanley's cup. It was the year Braden Holtby made The Save.

 

 

Hockey Fights Cancer - Wilson Fights Everybody

 Hockey Fights Cancer. Wilson Fights Everybody.

 

Then 2018 was the year we made The Save, too.

 

It was one of those things that doctors have to tell their patients and their patient's families not to pin their hopes on, because it almost never happens. Linda's initial diagnosis and prognosis changed. So this became more than the year Linda was on chemotherapy. It was also the year that she stopped a chemotherapy regimen she'd never needed. It's the year we left Virginia and moved to Maryland not just to fight, but to flippin' beat her cancer.

 

Finally, 2018 was the year the readers of Erfworld saved us.

 

Before this brutal year began, you were already the most supportive audience in all of webcomics. The Erfworld community had a long history of becoming the City of Heroes whenever things got dark. But the spring of 2018 was our blackest moment, and you outdid yourselves in love and generosity. It's no exaggeration to say we would be in ruins — emotionally, financially, spiritually, even physically — without the help that poured in, without that Toolshed pledge figure.

 

State of the Team

 

So let's break it all down, starting with how the people who bring you Erfworld are doing.

 

State of the Tumors

 

First and most importantly: Linda's treatment is going very well so far. She has posted from time to time about the various tests, treatments, side effects, possibilities raised, procedures undergone, and the whole emotional ride that comes with something like this. You can read more of those details in her "LiveRJournal" here, but the general picture right now is brighter than we ever had a reasonable hope for.

 

We know that her diagnosis is correct now. Way above that, though, we know that she's responding to treatment.

 

As I touched on in a prior news post, with neuroendocrine carcinoma (NET), even when the disease is significantly advanced, there are a number of paths to "cancer free" or at least to a lifetime management of the disease. Some of these treatments didn't exist even a couple of years ago. None of them existed until about a decade ago. Some treatment options involve combinations of radiation and surgery and drugs. The one we're trying is "the easy way" (ha!) which involves monthly shots of the drug/hormone sandostatin. In something like 30% of patients, this alone can be enough to manage the disease. You just have to continually monitor the tumors with periodic CT scans.

 

Linda's first CT scan since beginning sandostatin was very encouraging. No new tumors had appeared, the tumors she did have had not grown, and some of those tumors had measurably shrunk. The only reasonable explanation for this is "the treatment is doing exactly what we want it to do."

 

CT scans are not harmless, or we'd be doing them every couple of weeks. They involve a dose of radiation, with an accumulating lifetime risk. We will only know more when she gets another one, but the fact that her oncologist went directly to scheduling her next one for four months out (at the end of December) instead of the usual two or three speaks volumes about what they're expecting to see.

 

That's not to say that the next scan (or any subsequent image) couldn't be unexpected bad news. Unless her tumors eventually shrink away entirely (unlikely, but possible) or we reach a point where getting cancer free could be a goal of surgery and we decide to go for it (so she can stop having those regular CT scans, among other reasons), then Linda and I will live with that possibility looming over us forever.

 

Still, relative to her previous diagnosis and prognosis, this is an unbelievably great place to be. The relief is too difficult to describe. We got almost impossibly lucky.

 

The "almost impossibly lucky" thing is a story I've been meaning to share since it happened. You can read about the Spare Luckamancy badge in the Mine4Erf forums here.

 

State of the Team - Our Health in General

 

Unfortunately, the entire picture with Linda's health (and my own) is not as simple as one of us fighting one disease. Even as we experienced this monumental relief around her cancer treatment, 2018 was demanding its Luckamancy price in other health-related ways.

 

So far, it's mostly been about our eyes. Counting my visit to an optometrist yesterday, Linda and I have had, between the two of us, a grand total of 14 exams and visits with eye doctors since we moved to Maryland in July. I received a trial pair of contacts, which is my fourth pair of prescription lenses for vision correction in that span. Coincidentally, Linda also received her fourth pair of lenses yesterday. I'm sorry to report that neither one of us can really see right now well enough to do our jobs. I currently have two more appointments scheduled with eye doctors. My ophthalmologist is concerned about retinal detachment, among other things. Linda has it quite a bit worse, having been diagnosed with early-stage macular degeneration and cataracts.

 

But the vision stuff, as bad as it is, is really just where it begins. I have only just gotten started with a new primary care physician in this new health system. I need to see at least four different specialists and a dentist about my various concerns. I have an appointment with an allergist, who can't see me until late March. Linda has some concerns which haven't been addressed either.

 

Both of us have been relatively healthy people for most of our lives, so this is all new and unpleasant territory. We are trying not to let it slow us down, but it is having a major impact on just about everything we're trying to do, including producing Erfworld. The update schedule has not been what we've wanted lately.

 

And I have to add: while it feels okay to share these details about us, we are not the only members of Team Erfworld who have run into serious health, personal, and family difficulties in 2018. I'm really not at liberty to write about what anyone else on the team is going through. But as I said a little while ago, Linda and I are not the only ones who had it rough this year.

 

State of the Team - the Overall Outlook

 

Oof, I guess the whole news post has been a gigantic bummer so far. There's still more bummer-ness to come, too. (Especially when we get to State of the Finances.) But I'd have to say that the overall state of Team Erfworld is incredibly strong.

 

This group of seven people: Red, John, Brendan, Xin, Lillian, Linda, and Rob have held together through storms both literal and figurative. Lillian joined us more than a year and a half ago, if you can believe that. She finished out Book 4 brilliantly. Nobody's leaving, everybody's working hard, and we are all looking forward to what's to come for Book 5 and beyond.

 

Anyway, it's Thanksgiving. So I'm going to call this a "Part 1." I'm heading out to see my family for the first time in far, far too long. It won't be hard to think of what I'm thankful for in 2018 (even if "2018" itself is not on the list). After the holiday, I'll be posting the second half of the State of the Erf Address. It will be about money, tech, our plans for book printing, the reopening of the store (which may happen before the news post), and why we'll need to become a team of eight.

 

Happy Thanksgiving, with love and gratitude from all of us at Erfworld.

 

 

 I fight for Lindas. Linda Balder, and Linda Laughlin, wife of the Capitals' Craig Laughlin (who wore #18 as a player). Both Lindas were diagnosed with a rare and deadly form of cancer in April of '18. I suspect that Capitals' mascot Slapshot might be an Erfworld Double Eagle.

 

Comments

    • Bandaid

      Okay, what to say about this...

      First, YAY for Linda's changed prognosis then BOOO for all the other stuff. I wish you, Linda, the rest of Team Erfworld and while I am at it everyone else (except true Boopholes maybe) the best and good health and a nice time with their family whether they celebrate Thanksgiving or not.

      I am glad to hear that you sound optimistic despite all the bad stuff, I was getting worried (probably not alone in that) after the shedule slipped (which you only let happen if you have too).

      I recommend you enjoy your time, take a break, and then come back and tell us the other stuff so we can see what to do and how to help.

      Until later, one Erfworld fan among many.

      PS: Remind Linda to take her supplements!

      • The Unlurked

        That is primarily great news!  Please keep us posted and have a happy Thanksgiving.

        • edgewater1364

          All the best during all the worst.

          • khamul

            You guys are awesome. I love Erfworld. I am super-happy about my Erfworld subscription.

            Keep doing what you do. Ride out the storms as best you can. And as far as I can, I've got your back. You guys rock.

            • swmkp

              If any ever need any help with the store stuff or anything, I'd be happy to volunteer some time! I'm here in Baltimore and only work part time most months, so I would be happy to help here and there when I have time! Just putting it out there :) 

              • rkyeun

                You have one job, man.

                Don't croak before you find the pliers.

                • coineineagh

                  I'm getting serious 'artist' vibes, hearing your health and in particular, vision problems. Was it Picasso, who continued painting even when blind? I might be wrong. Or that one painter who couldn't see colours.. Anyway, hang in there, don't bite any ears off!

                  • Spicymancer

                    It's wonderful to hear the good news about Linda, and hopefully both you guys' health continues to improve. It's great to be a part of this community, and I hope I can continue to help out even if its just in little ways.

                    In the meantime, crit that turkey, slay the stuffing, and Happy Thanksgiving! =D

                    • CDS

                      Stay strong, fight the good fight and we'll be with you. 

                      • Aaronax

                        Keep fighting the good fight, and we'll be here to hand you the spear for the stabbin'.

                        • Adept

                          Meat is frail and troublesome. You have my sympathies, and the little financial support I can afford. Hang in there guys. We appreciate what you do :)

                          • WizWom

                            I must say, I have been reading Erfworld since book 1 was being serialized. When you made the announcement about Linda's diagnosis, I immediately pledged, there was no a moment of doubt what was the right course of action. And the extra $1000 in pledges since that fateful day shows that's the attitude of most people.

                            As a nuclear engineer, I can give you a little bit of peace. "cumulative radiation damage" is a myth, based on a flawed theory called "Linear No Threshold" for radiation damage. The actual situation is a Hormesis effect; moderate doses of radiation below about 100 mRem actually trigger a cellular repair mechanism, which fixes DNA damage. CAT and PET scans, and all X-rays, are well below the damage limit.

                            • Xellos

                              Well, I'm not one for writing positive things without mockingly insulting everyone including myself - but good luck to you anyway.

                              • tgillet1

                                You (Team Erfworld) are all amazingly strong people, making an amazingly strong team. Good Luckamancy on the health issues. Given everything you've dealt with already I've no doubt you'll get through it all, but I hope it is with the least pain (physical and otherwise) possible.

                                • Ozru

                                  Just upped my pledge.  It's not enough to cover Connor unless you severely underpay him (like, orders of magnitude underpay), but hopefully I'm just part of a legion of increased sponsors.

                                  • GhostCell

                                    Speaking as a one-eyed fighter of a rare sinus carcinoma, I share my current motto...

                                    Scarred, not broken.

                                    P.S.  I now believe in long-term goals more than ever before.  Mine is to see my grandkids graduate college and get married.  Note:  They are not yet conceived.

                                    Physically, a motto or goal may not matter.  Medically, a positive attitude can do no harm.  Emotionally - especially facing an unpleasant procedure - my motto reminds me of my strength, and my goal provides a touchstone... If procedure moves toward goal, I can and will endure it.

                                    • Coyoteiscrazy

                                      I have nothing to add. Other than, I am with you. We are with you. Just as you and Erfworld are with us. We are never alone. 

                                      Be well. - Coyote

                                      • Null

                                        I don't think it's fair to position radiation hormesis in the conditions mentioned as at all a settled theory. It remains highly controversial, and distinguishing it from LNT at typical small effect sizes is very difficult. Untangling confounders in the most drastic studies has been difficult. There's evidence for it, but to present it as settled science doesn't give the full picture.