Wishing on a Blue Star (33 page)

Patric did not come out of the background Jacqueline and I did. She and I met through
Star Trek
fandom, a huge group of mostly women from all over the world, who first joined together in the letter writing campaign of 1967-68 to save
The Original Series
, and then kept up connections through letters and fanzines in those long-ago days before email. Jacqueline and I got to know one another through exchanging snail mail well before we met—one of thousands of friendships and partnerships that grew out of Trekfandom. So we already had the experience of forming strong ties over long distances with people we came to trust with everything we cared most about. Patric felt like “one of us.”

Of course it is now commonplace for people to build relationships online, but before Trekfandom deep long-distance friendships were rare unless the people knew one another before circumstances separated them. So I think Patric was rather unsure of why we were so open to trusting him. It didn't help that Jacqueline and I think in words and Patric thinks in images—there were quite a few times when we were all saying the same thing and didn't realize it because we were using different vocabularies! It took a while, but eventually we reached a state in which we were completely comfortable working together.

When it came to tech matters, Patric was a godsend—neither Jacqueline nor I have the knowledge, training, or experience to be a sysadmin. Fortunately for us, Patric soon became as strongly involved in the Sime~Gen universe and our intentions for simegen.com as we were. He added a perspective completely different from ours, and influenced our world forever.

Over time we became as much friends as colleagues—and you must understand that all three of us are the kind of people who have a very few extremely close friends, not a host of acquaintances. What Jacqueline, Patric, and I have had is a weird sort of three-way intellectual marriage.

Patric's work is embedded in simegen.com. His artwork and various other graphics give visual life to our domain, and now to reprints of our books. We could never have done the work he has done for us—we don't have his vision.

I am so glad to have had Patric in my life, and in my life's work.

Friday, April 23, 2010

A nice day

Sometimes I get lucky. And sometimes I forget how lucky I truly am.

Today I was reminded, in the form of a simply nice day.

I was supposed to be working on a story, and I’ll apologize in advance for my lack, but I needed Papa, my resident chauffeur, to take me in to get prescriptions filled.

We did that, and on the way back home, we stopped off at a parts store so Papa could pick up a tool he needed for one of his projects. Nothing fancy there, except that we were both somewhat playful. Rare enough for a man who saw his wife dwindle away over many years, and has to watch me do almost exactly the same thing. And rare enough for me just lately. Yesterday’s drug solution gave me the opportunity.

We stopped for lunch, and generally goofed around, dawdling on our way home. As I said, rare. No appointments, no particular worries, etc.

The sun was shining when we finally got back, and I got the silly notion of burning the burn pile. He got the silly notion of weed whacking. (Remember this is the man who hates yard work with a passion.)

We generally cleaned up around our property, me pruning a few branches here and there and him helping me drag debris to be burned.

By the end of the day we were somewhat tired. He’s no spring chicken, but he can still move faster than me. :)

What would have been onerous labor at any other time was actually fun, simply because we each did what we could, taking our time and resting a lot, and neither of us doing anything beyond our means.

The end result was a thoroughly enjoyable day, which we capped by taking advantage of the last few coals of the burn pile. More than enough to cook a few hot dogs on a stick. :)

Keep in mind that my being sick has given him a purpose again. He never hesitates if I ask him to take me to the store, or if I need him to open a jar or bottle, etc. And keep in mind too that until recently, we sort of existed singularly within each others company.

All of that seems to have changed now. For example, I used to like doing yard work by myself, and never thought about asking him for help. Now, having him outside with me seemed like the most natural thing in the world, and as we talked (while singeing our fingers off cooking dinner) I realized he was simply keeping me company in his gentle, unobtrusive, “let me do what I think I can, and quietly lend a hand when I go too far” way.

There are any number of people who are healthy, wealthy, and have a bazillion friends, but none of them has a Papa like mine. :)

I will be eternally grateful that I “discovered” him before it was too late.

Thanks Papa. I love you.

Monday, May 3, 2010

Revisiting New Territory

Wow. So much has happened since I last posted, I scarcely know where to begin.

Lets see... The lymphoma is back, and after only six weeks out of chemo. That means a self donor transplant is out of the question. A donor transplant is still viable, but it’s not an option because once disability kicks in (and I am now told its assured) I will lose all my insurance because I will basically “earn” too much. A donor transplant will mean anti-rejection drugs for the rest of my life (and no real guarantee it’d be any longer at that) which I wont be able to afford because I wont be “earning” enough to cover them
without
insurance.

I now fully grasp the meaning of a “Catch 22.” :)

So... One alternative left; a drug called Vorinostat, which has yet to be proved against my type of lymphoma. If it works at all, then the best I can hope for is to slow things down (add a few more quarters to the meter) and if it doesn’t work, no harm no foul. It’s a milder form of chemotherapy, taken as a pill, and has side effects of its own, but with the exception of one concern, they should be generally easier to handle.

I had a painful opportunity to contrast and compare doctors yet again last week. As a consequence of my insurance, I am compelled to retain a primary care physician, (PCP) and if I didn’t have one, I would be assigned to a general practitioner. Mine turned out to be a fellow with whom, on the two times I met him, I bumped heads. The first time was our initial meeting, and he pretty much gave up on the full physical because either the chemo, or the cancer, affected his observations.

Fine, I understand that easy enough. What I didnt get was telling him how hard it was to find meaningful, relevant information with Google because of all the personal pages being indexed on a given subject; that I had to discard the first fifty hits or so as useless until I wound my way down to the professional papers. He then told me to take anything I find with a grain of salt because “anyone can get on a computer and post something.”

Um, didnt I just say that to him?

I took it as an indication that he wasnt really listening to me. Whatever. It’s not the first time that’s ever happened.

I discovered that all the pre-authorizations Doc has to submit for drugs and tests and such all have to first be approved by my PCP- the guy who doesnt listen- so I got it in my head that I’d make an appointment so he can see and document what all has declined since our first visit. The rashes on my skin, the weight loss, etc. I figured he’d have a better understanding of why so much was coming to him for approval all of a sudden.

Apparently I couldnt have been any more stupid.

During the recent scramble to find a medication that would last longer than the dilaudid, and be pre-approved, (The 3 day patches were denied, presumably due to cost) the PCP prescribed methadone. Fine by me, as long as it worked.

I’d been taking it for a couple of days when it came time for my appointment, and his first comments were about dosages, and how he would let me adjust accordingly, and so on. Again, reasonable discourse. But then he hits me up with something called a pain contract, telling me no doctor would prescribe narcotics without the patient signing one.

As he’s telling me about it, I found myself getting annoyed, and I told him I resented the concept. I certainly have no intention of selling the stuff, and by the way the contract was worded, I was very much concerned that it would preclude Doc from administering his treatments for the cancer. When I asked him what would happen if I didnt sign the contract, I was told “Well, I dont have to prescribe the medication.”

I admit my tact failed me at that point. Something in his tone bothered me.

“Wait. Wait a minute. Was that a threat? Because that’s how it came across,” I said. “I want to be sure I heard you correctly.”

He folded his hands, took a few deep breaths, then gathered up his notes and excused himself to leave. “I’ll be right back,” he said. “Stay here and I’ll be back in a few minutes.”

I’m thinking I pissed him off or something and he’s gonna go collect himself. Figures. I have that effect on people sometimes. Too blunt, me.

He comes back an hour later with a clinic administrator in tow. That man leaned against the wall and stared at me the whole time.

“I brought him to answer any questions you have,” the PCP said. While he was gone, I had read the contract and it literally said that while under the PCP’s care, I wouldnt seek out prescriptions from any other doctor, nor make appointments with any other doctor, etc. and to do so would terminate my association with his clinic.

Pretty much exactly what I was afraid of, in other words.

So I told the PCP I only had one question. “If I decline the contract, you dont write any prescriptions at all, right?”

“Well, yes.”

“Okay. Then I decline the contract.”

“Oh, um, okay.” he said.

“Do you know why I made this appointment in the first place?” I asked.

“For the dizziness?”

“No,” I said, slowly. “It was so you could document how much I’ve declined so you’d have a better understanding why so many pre-authorizations were suddenly being submitted.”

“Yeah. Alright. That’s fine,” he said, and gathered up his notes.

I watched him do that and I asked, “So, are we done then?”

He said yes, and I picked up my shit and left. So much for documentation.

Worse yet, I found out after the fact that he never checked with Doc to see if methadone would interfere with anything Doc had given me, or with the chemo, etc. WFT?!

I get that the PCP sees a lot of people, and that a significant majority of those people are low income and thus possibly more likely to abuse the drugs, (sorry for the profiling, but it’s statistically true) either by selling them or by taking them, so yeah, a contract like that would be important, but what I dont get is why the rest of my “care” isn’t important, apparently.

According to my conversation with the insurance company directly, I’ll likely be “termed” meaning they will dump my ass entirely. I cant say as I care too much, but I feel sorry for whomever takes my place. Hopefully they only have a boil that needs to be lanced, or something equally easy.

The bright note is that when all is said and done, when the insurance is gone and I’m left to my own devices, I won’t mind so much. It’ll be worth it to not have to deal with corporations, industries, and governments all who promise aid and turn out instead to offer it at such a high cost that even basic dignity is squashed.

I don’t think I’ll mind closing that last door forever. Let ‘em knock elsewhere. I aint buying anymore.

Patric

Addendum: I just got a call from Doc’s office and the experimental drug Vorinostat, has been approved. Now I wait for the specialty pharmacy in Pittsburgh to call me and set up delivery. Whoo Hoo!

Also, based on the comments I’ve received, let me clarify: The insurance company has been helping me find another PCP who will work more closely with myself, and Doc, regarding the cancer treatment. It’s probably standard for them, but they make me *feel* like they are going out of their way to expedite this, and that is a GOOD thing. :)

Thank you all for your concern and support!

Wednesday, May 5, 2010

Spinning the Wheel

Men blanched, women wept, and babies cried out in fear and confusion!

Two posts in less than a week? Holy Heaping Horrors, Batman? What’s next?

What’s next is to make things even worse by letting this one be good news for a change.

Grab your pacemakers and pray to you local deities. :)

I called to confirm it today, so tomorrow should see delivery of the Vorinostat, and by the sound of it, four months worth. Plenty of time to see if the stuff will work, and I don’t have to beg some clueless goomer to get it.

Which is ironic since I met my new PCP today.

I now understand why the folks at my insurance company thinks this new place, and the new PCP, would be a better “fit.” It seems they deal almost exclusively with chronic pain sufferers. Makes sense, considering that was the particular problem we were dealing with at the time, and serendipitous in that aside from pain management, there is very little a general practitioner can actually do for my situation.