A New Journey

How long has it been?

For someone who enjoys writing, I’ve been rather quiet as of late. Perhaps too many projects going on? With every turn there seems to be more, too.

And there’s that other thing.

Projects? Let’s review those first. Gaming. D&D. You know about that. A few months ago, I was asked to write a blog and submit it to a publisher. I haven’t heard from them in like 3 or 4 months. Someone I met at GenCon last year during a seminar. Nice guy, local, encouraging. Maybe something will come with it. Maybe not. I’m not holding my breath.

D&D Group 3 completed their campaign in November. Group 4 is ongoing. Group 5 starts in a week with 4 new players. I’ve been reworking certain details for them. One player from Group 3 wants to help with both active groups, running NPCs and helping new players with their characters and stuff. His help will be invaluable. Thanks, Brian!

I finally resumed working on Kabize’s story. Hopefully, I can keep up the momentum and get it to the point I want. I already know the ending. It’s been played through twice, though I’m not satisfied with the dramatics of the narrative. It was much better the second time. We’ll see how it goes with the next group, though Group 4 isn’t as much into story narrative as the prior groups. Murder hobos. They want combat, but they must realize there are consequences to their short-sighted decisions. They’ll learn about one of them either next session or the following.

Jon thinks I’ll eventually publish Neuith. The idea appeals to me, but I’d need permission for the IP I’m using or find ways to remove it. Some of the Steeleye Span songs I use aren’t based classic ballads but were written and composed by band members past and present. To turn Neuith into something that can be published will require a full team. It’s not something I can do on my own. I don’t have the time and all the necessary skills. I need someone willing to help me make hard decisions. And financing for artwork, editing, and typesetting. If I do it, I want it done right.

Then there’s the newest project, which is unrelated to D&D. After playing a board game during Thanksgiving break with my brother, he noticed one of my long-abandoned game design projects. U.S.S. Ranger, a space-based adaptation of Betrayal on House on the Hill, where the ship is a three-dimensional board and the crew plays through a variety of scenarios. I built the ship using foam board and had started working on the rules and components. It was quickly bogged into details and story elements, and I set it aside long before it ever made it to the table for initial playtesting.

We re-assembled the ship as best we could and talked about the general idea. He liked it but had some great ideas of his own. What we came up with is a game pulling elements from many games, starting with abstracted physics similar to the old game, Triplanetary (now owned by Steve Jackson Games), tile-based ship construction loosely modeled on Space Truckers, potential traitor mechanics, and an implied storyline for campaign mode. A lot of inspiration comes from the Amazon Prime TV-series, The Expanse.

Rob is a great artist and is using a decent graphics program to create the artwork. He’s also more detailed-oriented than I, and more in-tune with physics. While he works on rule mechanics, I’m constantly having to pull him back because the game must be playable, too.

I’m working on content and scenarios. My experience with game design is well-suited to convert the hard physics into playable mechanics. Of course, my contributions still require editing. Right now, we seem to be a good team. It’s great that he and I are working cooperatively on a project like this. We did something together about 20 years ago, an “interactive novel” but it fell by the wayside when life events intervened.

Speaking of life events. I think I’ve been avoiding the subject, because it’s personal. However, if my story can be an inspiration, it needs to be shared. Yet, I’m still at the beginning of this journey, which I will likely carry with me for the rest of my life.

Over a year ago, I noticed I was having problems focusing my eyes. I wear glasses and have for over 15 years to correct far-sightedness and astigmatisms. Normal stuff. Last year, when getting a new pair, we struggled to find ways to correct double vision. It didn’t matter what combination of corrective lenses we tried my eyes wouldn’t work together. Individually, no problem.

I’ve always had problems with headaches, too. My mom suffers from frequent migraines, and it seems I have the same propensity. Sugar imbalance from Type 2 Diabetes and chronic sinus problems are the primary contributors. But through spring, they were getting worse.

And then the focusing issues. They started interfering with normal activities. Driving, working on the computer, playing hockey and tabletop games. I started the habit of closing my left eye and letting my dominant right eye do the work. I’d sacrifice depth perception, but I could see. However, the effort exacerbated the headaches. I talked to my doctor about it and he prescribed Topiramate. It’s a daily medication that is supposed to reduce the incidents, as well as a rescue medication for when the headaches do occur.

Unfortunately, Topiramate has a rather annoying side-effect. Brian (the gamer friend mentioned above) takes it and warned me of this side effect. It makes soda taste like crap. I’d been on it less than a month and I found I couldn’t drink diet coke (or the other diet sodas I enjoy) anymore. That mean I wasn’t getting caffeine. In the last week of May, I quit the sodas and the Topiramate. It was a week of hell. I missed three days of work, culminating in going to the hospital on Friday, May 31.

The ER doc reviewed my symptoms and ordered a CT Scan. His primary worry was some sort of growth in my brain. He wasn’t concerned about the caffeine withdraw, but the double vision. A lot of things can cause this. The CT Scan saw nothing. Next was the MRI. I think I spent an hour in that infernal machine, though it was only 20 minutes. I spent the time singing Rush’s 2112 in my head.

An hour later they reported the results: demyelinating disease. There are lesions on the nerves that control the muscles that control my eyes. Other places, too. Affecting my left eye worse than my right. A quick “follow my fingers” test confirmed it. My right eye tracked just fine, but my left eye struggled to keep up. Official diagnosis: Diplopia and Demyelinating Disease. Set an appointment with my primary care physician and a neurologist as soon as possible.

My wife immediately researched. She found that the most common cause of Demyelinating (hey, finally typed it right on the first try without needing spell-check!) is Multiple Sclerosis. MS? WTF! And, she was right.

The following day we stopped at CVS and bought some eye patches. I’ve been wearing a patch over my left eye ever since. It’s a lot better than squinting all the time. Of course, I had to explain this to my coworkers. Jokingly, I told them I downloaded too many movies from the Internet and now I wear the pirate patch. My next upgrade is a parrot on my shoulder. Arrrggh!

We got in to see Dr. Howse, my primary, the following week. Followed his finger. Same results. He reviewed the report from the ER, and said, “Yeah. Probably MS, but I don’t have enough information to diagnose.” I asked about why the ophthalmologist didn’t catch it. He wasn’t surprised. They routinely check for diabetic damage and work on correcting vision, as is their expertise. However, this wasn’t the kind of thing they test for.

We got in to see the neurologist and scheduled a spinal tap, also known as a lumbar puncture. This is not something I ever want to do again. Imagine lying on your belly with a knife jabbed into the middle of your back. You can’t move and they keep it there for ten minutes. The pain chart on the wall only goes up to 10. It went up to 11. I survived, though.

It took another month to get back to the neurologist. Those guys are busy. Dr. Stobel is a great guy, though. He told me about the treatment he recommended. Do I have MS? 80-90% likely. However, even if I didn’t, the treatment is the same. They’ll write it up as RRMS and submit it to insurance.

What is MS? You can go do your own research if you feel so inclined but let me explain it as I understand it. Sometime in my life I was exposed to something that caused my body to build specialized defenses. Antibodies. No one knows what that infection was. There are a lot of theories, but none have been proven. Being diabetic doesn’t help. It’s not a cause, but as my body fights sugar imbalance, my ability to fight other things is weakened.

Whatever it was these specialized defenses were built for is long gone. They did their job. However, the defenses don’t go away. They stand like vigilant soldiers inside my body. Eventually, they get bored and start thinking there are other things in my body that must be eradicated. Things that are supposed to be there. One such thing is the myelin sheathing on my nerves. These bored soldiers started attacking the insulation that protects my nerves, exposing them like stripping wires in an electronic device. This leads to shorts, errors in transmission, and signal gaps, which then leads to over fifty documented potential symptoms of varying severity. Me? Double vision. Possibly a few others, like fatigue, diminished coordination and reaction time, occasional inability to think of the right word.

Dr. Stobel’s offered a couple options, with an obvious preference for one of them. The first treatment is Aubagio, a daily pill I’d take for the rest of my life. It does nothing to cure or correct the problem. According to the literature, it prevents the errant antibodies from reproducing. What Dr. Strobel recommended is Lemtrada. It is a light-weight chemotherapy delivered by infusion. What it does is target the specific antibodies and kills them without prejudice. We start with a 5-day process where I spend 8 hours a day in the hospital or clinic. The infusion itself is 4 hours, preceded by a steroid prep, followed by 2 hours of monitored observation. After this treatment, I get a monthly blood test for a year. Round 2 is 3 days of the same, followed by 4 years of blood tests. For most patients, this is it. MS isn’t technically cured but put into permanent remission. A small percentage of patients go in for round 3 or 4, but these seem to be people who have more advanced symptoms that what I’ve experienced.

The challenge? Insurance. Lemtrada isn’t cheap. The first round runs between $80k and $100k (US). Let’s add the complication that my company, in their infinite wisdom, decided to change our insurance company on June 1st. It took two months to get all the deductible and co-pay data transferred. We’re still dealing with it. Doctor visits that should have been covered weren’t paid, forcing us to pay out of pocket, only to receive a refund a couple months later. Same thing with the prescription co-pays, and we’re both (me and my wife) taking some rather expensive meds. Changing formularies caused a couple changes, too.

Fortunately for us, Sanofi-Genzyme, the company that makes Lemtrada, has a program to assist with the cost. It’s a “REMS” drug, meaning its use is closely monitored by the FDA, and they dictate a high level of interactivity with me. We met with a representative of the company who came to us and shared a presentation explaining everything. Ann, the rep, participated in the clinical trials and has personal experience. She’s the one that documented most of the side-effects and reactions and knew what to do to minimize them.

I’m also working with an organization called MS One to One. They provide support and advice for people in my condition. No cost to me. Obviously, emergencies are dealt with locally, but for anything else, they are a great resource.

I worked with Dr. Stobel’s assistant for two months getting everything prepared. She had to amend the diagnosis specifically to “RRMS” to satisfy the insurance requirement, but finally, we got the approval. I went in for a blood test to make sure I don’t have hepatitis or HIV, the only contraindications for Lemtrada. I had no worries, but it’s always nice to know for sure.

There was only one caveat. I’m diabetic. I can’t do my treatments at a clinic. Only at the hospital. Just in case something goes haywire with my sugar, a clinic doesn’t have the facility to respond. It meant driving 15-20 miles instead of 3 or 4.

Of course, the blood test results are only valid for 30 days, and the insurance approval came on day 31. The next day, Friday, with the orders in hand, I was back at the lab. Turn-around time was quick, and we got the results the following Tuesday.

Let’s get it on the schedule! We wanted to get this done before year-end to maximize the insurance benefit and minimize out-of-pocket cost. While the treatments were fully covered, the hospital’s charges aren’t. Waiting for January could mean a couple thousand dollars out of pocket. This is one time when going to the hospital made a difference. Clinics close during the holidays. Hospitals don’t. We started my infusions on Monday, December 23rd and finished them the following Friday. Yesterday.

We paid attention to the advice of those who had gone before, but some of that advice wasn’t helpful. The initial steroid treatment tends to make food taste funny. Bring candy, like red-hots or something. We did, and I had some. But wait! I’m friggin’ diabetic. Candy raises my blood sugar, and we had to monitor it. Not only that, the steroids are mixed with succinate and prednisone is known to raise blood sugar. Guess what. My sugar was high.

Then, after the Lemtrada started, I suffered from severe chills. We piled on 3 blankets but to no avail. My teeth chattered and I did everything I could to keep my muscles from cramping. I snacked on some Reese’s Pieces through the afternoon, and when the infusion was done, my blood pressure and heart rate were too low, and my oxygen level was off. My lungs were clear, which is good. They kept me longer, for they couldn’t let me go until my vitals stabilized. We expected to be gone before dinnertime, but since we were still there, we tested my blood glucose: 344! I’ve never had a reading that high before. For the first time in my life, I received an insulin injection. Only 4 units. After dinner, my vitals stabilized and we were free to go home, but with the warning that if there were any symptoms, report them. We bought a box of Benadryl just in case.

In the morning, I awoke with a headache. I took one of my migraine meds with Tylenol with my normal morning meds. I repeated this course every day except Friday.

Day 2 through 5 went smooth as silk. No side-effects. No reactions. I just had to pee a lot. Vicki stayed with me every day except Friday. She was exhausted and didn’t feel it would be safe to drive. I took an Uber to the hospital and she came later to bring me home. I bet I was quite the site getting into the Uber – a mask over my nose and mouth, a patch on my left eye, and my hat covering my hair and ears. All I needed was a chainsaw or hatchet.

We dealt with some inconveniences on Christmas Day because the complementary valet service was closed, and the main entrance was locked. While at the hospital, they didn’t want me walking, but to use a wheelchair. I had to walk from the front door to side door, then back to the front door to get a chair. Thursday, we spoke at length to the valet manager. The signage and notification were inadequate. They were very understanding and promised to bring it up at the next staff meeting.

My nurses, Lindsay and Trish, were great. I have nothing but praise and admiration for the work they did. Rarely did they need the help of their techs and only once did I have to wait more than a few minutes after making a call, and that was due to an extenuating circumstance I wasn’t aware of. Apparently, there was a code-blue going on. Trish wasn’t involved in it but had to cover for those that were. I almost peed my pants while waiting. In balance, peeing my pants is a lot better than a patient dying.

We finished the day at 4:30 or so and left the hospital with post-infusion instructions in hand. I’d already read the literature, but it was good to review it.

Presently, my immune system is severely compromised. I should not be around anyone who is sick. Avoid high-risk foods – anything uncooked or undercooked, no non-pasteurized dairy, cold lunch meats, and so on. Keep an eye out for symptoms that might still arise – trouble breathing, hives, and a variety of related issues.

Starting January 27th, I get a blood and urine test to measure my “numbers.” There are some specific numbers that my body must achieve to show progress. In the meantime, which started before my treatments, I’m taking Acyclovir twice a day. I have an appointment to see Dr. Strobel in January, of course.

Today, I’m taking it easy. I’ll continue this sedate lifestyle for at least a few days. I’m off work until the 2nd. We have company planned for New Year’s Eve and, as mentioned before, the new D&D group starts on Friday the 3rd. I did a couple chores this morning and it wore me out. My next hockey game is on the 5th. I doubt I’ll play, but I plan to attend and support the team. It’s the last regular season game. Our team is in first place. Win or lose, we’ll hold on to the first seed in our division. These are great guys and gals who have supported me through this journey.

My final comment about this medical stuff is that I want you, my reader, to understand that God only gives us challenges we can handle. I have faith that with His help, we (yes, WE) will overcome and remain focused on His will. My life as a gamer, hockey player, co-worker, is all to glorify Him, though I’m sure some would question this. I err. I make mistakes. I’m human. I’m not perfect. But I am a fighter. I don’t give up easily. I’ve already accepted that I’m stuck with these chronic incurable conditions. What’s one more? If God thinks I’m up to it, who am I to say otherwise?

I’ve heard that MS patients have a high rate of suicide. This doesn’t surprise me, but it doesn’t have to be the case. We’ve all heard about the journeys of celebrities and their struggles. Let us be inspirational to those newly diagnosed with this terrible disease or any other auto-immune disorder. Science is improving. Someday there will be a cure. Someday, these things will be a thing of the past, and giving up early only cheats the rest of us. Tell us your story. Share your struggle. Be a hero, not a victim.

I have new challenges in my life to deal with. New commitments and new opportunities, too. With God’s divine guidance and the loving support of my wife, Vicki, we will forge forward. Thank you for reading through this diatribe. I hope my words serve as an inspiration for whatever struggles you’re dealing with. The last thing I want is your pity or sympathy.

2 thoughts on “A New Journey

  1. Thank you for sharing your story Scott. I wondered how you’re doing. I have some wonderful memories of your game and of course your doxies! I share your faith. Sending prayers

    Like

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