[personal] Another day in Omaha
Yesterday was quite fine, but I overslept badly last night, in more than one sense of that phrase. I was asleep, or at least nominally unconscious, for nine hours. My sleep was very fitful, and plagued with odd dreams, mostly about unsuccessful attempts at travel insofar as I can recall.
Once again I woke up later than I hoped, and have wound up feeling rushed this morning. I have a tentative 10 am appointment at my hold workplace, and a firm 10:45 am leading to a group lunch. I’m planning to spend the afternoon with garyomaha, then he and I will join some more friends for dinner.
How can I feel so busy when logically I am taking things easy? One of life’s sweet mysteries. Meanwhile, efforts proceed apace on securing clinical trials, and various other life issues such as car repair, fixing my broken recliner, and dealing with the problems I’ve been yammering about of late. As for the personal generosity that has been shown to me this week, thank you so very much. You know who you are…
Off to the cold soon. It is currently zero degrees F outside here.
Posted: 7:39 am Fri December 06 2013 | Comments(0) |
[personal] In Omaha, various reflections, an open dinner of sorts
I’m in Omaha, where it is currently 10 degrees outside. Because reasons.
Due to travel (which went fairly well, minus a few bobbles) I did not get to sleep until a little after midnight last night. Even allowing for the two-hour time difference between Pacific and Central, this is staggeringly late for me. It is probably no coincidence that I slept solidly for nine and a half hours.
The downside of that is due to a lunch date with a friend, my morning has been very rushed and out of sorts, where I’d expected to move slow and fly low today. Hence also the late blogging.
The Omaha Beach Party meets tonight at 6 pm at Zio’s on Dodge. If you’re within striking distance of Omaha and would like to see me, feel free to drop by. It will be a bunch of writers and friends eating pizza and yakking for a couple of hours.
Meanwhile, being here is bringing a bunch of my mortality thoughts hurtling back to the surface. I’ve spent the years from 1999 to 2013 working jobs either based in Omaha or with a strong connection to Omaha. I’ve visited this city at least a hundred times, literally so — that’s not hyperbole, that’s 8-14 trips a year across most of those 14 years. Omaha represents one of this big parts of my life that has already sloughed away in the face of cancer’s mortal decline.
Still, weather and ruminations notwithstanding, I am happy to be here. I will see my old work friends, and spend the weekend with some of my dearest friends in the world. That is a goodness.
Back to Portland on Monday, and a medical appointment on Tuesday regarding one of my possible avenues for a clinical trial. No rest for the weary. (Well, except that long night’s sleep.)
See some, all or none of you tonight.
Posted: 10:22 am Thu December 05 2013 | Comments(0) |
[conventions|travel] The high cost of cancellation
As I mentioned yesterday, I am having issues with United Airlines. This first cropped up a while back, as discussed here: [ jlake.com | LiveJournal ]
This all goes back to my troubles trying to get to this year’s World Fantasy Convention in Brighton. (I have discussed some of this previously here on the blog.) Last summer, I tried to book plane tickets for me and Lisa Costello to fly there. The $700 per person UK arrival fees for a free mileage award ticket were impossible for us to meet. At the time, I checked out simply paying for a fare, and even the cheapest was far higher, because those $700 fees were embedded in any trans-Atlantic airfare to London.
Unnamed Benefactors stepped forward and offered to fund our airfare if we would pay our own on-the-ground expenses. I very gratefully said yes, and proceeded to arrange a low-cost European vacation for myself by couch surfing in London and Paris, spending money only on the Eurostar train to get between the cities. Except for the convention hotel itself, my only expenses otherwise were going to be food and incidentals, as my Unnamed Benefactors provided tickets for the two of us on United Airlines. Lisa was planning to fly out the day before the convention and join me.
Three days before my scheduled departure, Lisa’s father suffered a massive stroke. Other relatives stepped forward to respond with immediate help, but Lisa needed to fly to Maryland at the end of that week to help with the necessary but difficult lifestyle transitions now underway.
That meant (and still means) that Lisa was now juggling my life-ending terminal illness and the life-changing illness of one of her parents. I could not leave her alone with this. So with great reluctance, we cancelled our trip to Europe. We also severely truncated a post-trip engagement with my agent, and cancelled the visit of another friend who was due after Orycon, both of these to great regret.
The financial aspects of this situation have turned into a severe mess.
In order to cover the expenses incurred by my Unnamed Benefactors, I also sought a compassionate medical emergency refund from @UnitedAirlines, which states on their Web site that they provide such consideration. Unfortunately, since our tickets were purchased as nonrefundable airfares, United Airlines also does not offer any refund. Their response to me did not even acknowledge the nature of my request, simply stating that my tickets were nonrefundable, but that I did retain an airfare credit. Which isn’t even my money, as the Unnamed Benefactors paid for it. And it’s not like I’m going back to Europe anytime in the rest of my drastically foreshortened life.
At the same time, my Unnamed Benefactors wrote me asking me to pay them £1,295.90 (approx. USD 2,073), as we would not be attending WFC.
This absolutely floored me. If I had $2,073 to spend on airfare, I would have bought the damned tickets myself in the first place. What I thought had been an act of kindness and charity towards me turned into me being expected to pay $2,000 for the privilege of not attending WFC so I could help Lisa care for her stricken father.
The books do in fact balance somewhat. Were I to directly pay back my Unnamed Benefactors, I would get to keep the airfare credit, less change fees and penalties. But I don’t have $2,000 sitting in a travel budget to give them. If I did, I would have bought my own tickets in the first place. If United were going to refund the tickets, the whole business would just be a wash.
But after multiple rounds of discussion, United has flatly refused to refund the airfare. Apparently a sudden life-threatening illness on the part of my partner’s father does not constitute a medical emergency in their eyes. Which makes me wonder what the hell does? I’m pretty damned irritated about this, most especially about the amount of time I have already spent focusing on this issue. My life is running out of time — between the shocking and insensitive demand from my Unnamed Benefactors and United Airlines’ refusal to honor their own compassionate exemption policy, I have been expending significant amounts of that finite time and energy on things I should never have had to deal with.
All to no avail thus far.
I’m honestly not sure what to do here. Had I known the original offer of tickets to WFC required a complete payback in the event of cancellation, I almost certainly would not have accepted it. My own health is too precarious, quite frankly, which is why all plane tickets I buy and pay for these days are purchased with trip insurance. While I have enough money sitting in my bank account to pay back my Unnamed Benefactors, that’s not what it is for. And I cannot spend a United Airlines airfare credit to pay my bills or help Lisa help her parents. The budget isn’t there, especially to pay for a trip I am not even able to take.
I’m feeling very pushed around right now, and looking at a lot of expense well beyond anything planned or budgeted at a time when our expenses have skyrocketed due to both my own illness the problems in Lisa’s family. I’m also much more wary of accepting offers of assistance in the future, as I never foresaw hidden strings like this and do not know how to foresee them going forward.
There’s a strong temptation to tell my Unnamed Benefactors to take a hike, but that’s hardly ethical as I’m apparently inheriting the airfare credit regardless, given the intransigence of United Airlines. I’m tempted to hold a small fundraiser to pay this off, but that also hardly seems fair to people who might want to support me. If United Airlines honored their own compassionate refund policy, the problem would essentially not exist, but that road has now been closed.
This situation frustrates me immensely. At this extremely difficult time in my life, I am left with yet another large, unbudgeted expense for which I have nothing to show but trouble and a waste of my precious, waning days.
Posted: 7:34 am Wed December 04 2013 | Comments(7) |
[cancer] Field notes from Cancerland, in a deep and dark December
I am tracking an increasing number of health metrics. I now measure my blood pressure every morning along with my weight, and just lately have begun tracking blood sugar as well. The blood pressure measurement is a function of monitoring medication side effects. The blood sugar tracking is because some of the studies I am interested in require a certain range, generally focused on me not being diabetic.
As it happens, I was diagnosed a few years ago as pre-diabetic. Given my current life expectancy, the issue of my potential diabetes has slipped quite low on our list of medical priorities. However, keeping my glucose both low and steady has a number of benefits besides keeping me in range for certain studies. The downside of this, of course, is some of the things I love most to eat (pizza, anyone?) are not conducive to managing blood sugar.
Lisa Costello follows a long term diet protocol focused on nominal-to-no intake of simple sugars and simple carbs. The easiest thing for me to do is eat off her menu, which would benefit both of us. I will have to be careful about feelings of deprivation, which are always the biggest threat to any diet plan I follow. On the other hand, my entire life is made of creeping deprivation these days. Why should this be any different?
My morning routine continues to evolve. Right now I wake up, cuddle with Lisa a bit, go relieve myself (without eating or drinking anything but a sip or two of tapwater), weigh myself, take my blood pressure, check my blood sugar, exercise for 30 minutes, mediate for 8 minutes (I am about to up that to 10 minutes), make and eat breakfast, then blog. I’m trying to sort out if I should re-order any of this activity. For example, would I be better off meditating before checking my blood pressure and blood sugar? All this takes quite a bit longer than my old, workaday morning routine, and I’m not quite accustomed to that, either. I rarely have morning time pressures any more, except for the occasional early appointment or scheduled phone call, but old habits die hard.
Continuing to pursue clinical trials
I have an intake appointment next week after my return from Omaha (one of two days, which as yet not confirmed) for a trial here in the Portland area outside of my treating hospital. There have been a number of phone calls and emails between me, Dad, two different entities at the National Institutes of Health, and my treating hospital about records transfer. Stuff is happening. What it means, and what happens next continues very unclear.
Between Lisa’s family issues and my medical uncertainties, I’ve been staving off out-of-town friends who want to visit. Unfortunately for me, those medical uncertainties are probably the status quo for the rest of my short life. So Lisa and I are looking at calendars with an eye toward me scheduling people to see me again, except that any plans I make are subject to sudden change or cancellation. This is very frustrating, but as I said to yourbob, this is also me being a dithering idiot, not a dick.
United Airlines has again turned down our request for a refund of the cancelled flights to the UK. I will post a more detailed commentary on this in the next day or so, but I’m very frustrated and more than a little appalled. What the hell is the point of having a compassionate refund policy for medical emergencies (which they nominally do) if a parent’s massive stroke doesn’t qualify as a medical emergency? It’s not like I’m ever going to have a chance to go back to Europe at this point, so a putative fare credit doesn’t do me any good.
Speaking of frustrated, my disability insurance carrier has just taken $8,400 per year out of my pocket through an entirely legal scam protected by the ERISA statutes and associated case law. While the issue is something I might even prevail upon through appeals and legal action, I do not have the time in my life or resources to fight an organization with hundreds of attorneys on staff. Which is precisely what they count on, of course. Better to squash people like me now than open the door to thousands of similar claims. This is an issue which can ultimately only be addressed by Congress, but as the insurance industry has much better lobbyists and makes much larger campaign contributions than any individuals like me ever will, I’m pretty much screwed. As is everyone else ever in my position.
The worst part is, I can’t even fight this out publicly, as my carrier has completely legal unilateral authority to modify or suspend payments to me for any cause they care to establish. (Another ERISA scam.) This means that if I make trouble for them, all they have to do is suspend payments while they commence an audit of my claim and I am flat out of money.
It’s a criminally stupid system that absolutely privileges corporate capital and shareholders at the expense of consumers in need, and the game is so rigged that it’s impossible for an individual to fight. And this is a set of issues that I, like most Americans, was completely unaware of until I fell into the trap.
Welcome to the marvelous land of disability. Our society’s treatment of those in the worst sorts of need is criminally immoral. And I say this as one of the luckiest ones in my situation.
ETA: A couple of things I should have noted.
(1) I already have a very competent disability rights attorney advising me. That’s how I know what I do about ERISA and the appeals process. Their advice essentially boils down to, “Sucks to be disabled, doesn’t it?”
(2) The actual amount of money being taken from with force of law is rather higher than $8,400. The rest of it is being made up by “offsets” connected to SSDI benefits, etc., which serve no actuarial or financial purpose except to reduce my disability carrier’s liability exposure, and come at some significant cost to me in terms of tax consequences and so forth. Frankly, that’s legalized theft, too, but it only sets me back a few thousand dollars per year. The $8,400 is the amount of my dead loss due to their interpretation of their right of offset, for which I actually have no offset whatsoever
Posted: 9:00 am Tue December 03 2013 | Comments(0) |
[personal] Moving right along
Still feeling pretty loopy from this low grade bug. Very much in a state of anticipation this week, and not in the fun way. I’m currently scheduled to fly to Omaha Wednesday for one last round of visiting with my many friends and colleagues there. I’m pretty sure this trip will happen, at least at the front end. Waiting to hear back from various clinical trial sources about my next moves there (NIH and elsewhere). Any of those phone calls and emails could trigger an intake visit at their convenience. Plus I have to sign my updated will and estate planning documents this Wednesday, right before I head for the airport.
Various friends want to come visit. I’ve been reluctantly putting everyone off for the sake of sorting out some of this healthcare stuff. It’s leaving me slightly testy, but I don’t see much point in firming plans which are more likely to fall over than not. At the same, in putting people off I’m putting off things I want to do while I’m in relative good health.
So, yeah. Grumble grumble. I’m alive today, I should be grateful. But sometimes I feel like I inhabit the bottom of a deep well of logistics, and it’s all shifting shadows and angles of the light down here.
Posted: 7:59 am Mon December 02 2013 | Comments(2) |
[cancer] Working through the universe of clinical trials
mikigarrison, Dad and I spent much of Friday working through questions and decisions about clinical trials. Miki and Janet Freeman-Daily had been trolling online resources from NIH and elsewhere looking for possibilities, and diving through my medical history with Dad to try analyze how I matched the qualifications.
There are several issues right up front with qualification matches. One is that I have survived so long with this cancer that I have pushed through every available, approved treatment. This in and of itself disqualifies me from some trials, as they can have a matrix of “must not have been treated with X”, or “must have experienced outcome A when treated with Y”. While I am not flatly unresponsive to chemotherapy, my cancer has been pretty darned refractory. Another issue is my mutation status, as discussed here before. I have a rather rare KRAS mutation, which means that I am ineligible for studies seeking only KRAS wild type patients, but I am also ineligible for studies seeking only KRAS mutated patients, as my mutation doesn’t correspond to any of the handful of recognized types.
There are other qualification filters as well. For example, my ECOG score (roughly speaking, a measure of baseline health and fitness) is relatively high for my disease history and duration. Perhaps unusually so. This makes me more fit for some studies than the average patient.
It’s also the case that the intersection of my survival time, treatment history and mutation status put me in a very small pool of patients, for which many studies will not have an interest as people in that pool are rare enough as to not be worth targeting with research dollars.
Of course, we have our own selection criteria. Studies which have very low probability or unknown outcomes are less interesting to us than studies which are focusing on refining understanding of a known potential outcome. (I’m probably saying that wrong from a clinical perspective, but you get the point.)
Travel time, and time spent away from home, is also significant. I don’t mind running off to the NIH in Bethesda, MD if I need to, but I can’t spend months there as an in-patient study target. In principle, I could spend months here in Portland, or even Seattle, as an in-patient study target, because of proximity to my friends and family, and especially the_child. Even there, the nature of the study inflects how we view travel. For example, a study which leaves me severely immunocompromised presents different challenges from a study which leaves me severely fatigued.
Location is relevant in other ways. NIH studies can be two or three years ahead of university and hospital studies in terms of the currency of the research being leveraged. NIH studies also usually include a travel stipend, which is otherwise quite rare. So I could go to NIH without having to spend a lot of money (or do a lot of fundraising), where a similar study at Johns Hopkins in Baltimore would have travel costs coming entirely out of my pocket (or those of my friends). I frankly don’t know yet how much, if any, of this my health insurance carrier will pick up, as there’s no point in asking them until we’ve got a better handle on what we’re asking for.
We’re also quite interested in treatment modality. Per mikigarrison, there are four main cancer treatment modalities being explored in clinical trials these days:
- Cancer vaccines
- Monoclonal antibodies
- Immune system re-engineering (using apheresis to harvest a specific type of immune cell (which varies on the study), genetically modifying the cells to turn the immune system on against certain tumor antigens, and re-infusing them into the body)
- Anti-metabolite or otherwise cytotoxic drugs (newer drugs or drug combinations in line with what we think of as “traditional” chemo medications)
As it happens, I have extensive experience with anti-metabolites, to small effect except for my six successful months on Regorafenib, the drug which has now failed for me. I have modest experience with monoclonal antibodies, to no particular success. So in principle, we’re a lot more interested in trials of immune system re-engineering techniques or cancer vaccines, reasoning that if the other treatment modalities have failed me, it’s worth trying one with which I have no prior history in hopes that will be more effective.
As you can see, there are a number of overlapping selection criteria both from my perspective and the perspective of the study recruitment process. This means there is no clear-cut decisioning process or stack ranking for preference. Rather, everything falls into a matrix of factors, from which we have to make judgment calls.
At this point, looking within my somewhat narrow range of qualifications, we’ve found one Phase 3 clinical trial of a drug which has a strong response history for my kind of cancer. Issues there are the trial may be closing down, meaning I’ve missed the recruitment window, and that as a Phase 3 trial, it has a placebo arm into which I am at risk of being selected. Also, this is an anti-metabolite treatment modality. We’ve also found three different Phase 1 trials at NIH (Phase 1 trials do not have placebo arms), two of which are anti-metabolite trials, and one of which is an immune system re-engineering trial. Miki and Dad are working on a short list of other trials for us to pursue, most or all of them at institutions here in the western United States.
None of these trials are in Portland, but the next available trial in Portland which holds any promise for me doesn’t open before February at the earliest. That’s a long enough time frame for me to seek and enter another trial, and if I fail out of another trial, still be on deck for the that Portland trial.
Like almost everything else connected with my illness, this is a complicated and time-consuming process. I am profoundly grateful to my friends and family who are willing and eager to invest their time and energy in helping sort this out for me.
Also like almost everything else, the process is uncertain. I might be on the phone this week with an opportunity to go be screened somewhere for intake right away, or nothing might happen for weeks and weeks. So I can make no plans or commitments with any confidence at all.
We just keep trying, because that’s what we do around here. When I’m too exhausted or overwhelmed to keep with the trying, others carry my flag for me a while.
Posted: 8:50 am Sun December 01 2013 | Comments(1) |
[personal] The weekend and me
Lisa Costello and I both continue a bit under the weather. She thinks we have the same bug, I am not so certain, though she’s probably right. I feel more or less okay in the morning, after a very slow start and a night of oversleeping. By afternoon I am fatigued, logey, mildly headachey, and feel as if I have a fever, though I am not hot. Lisa has much the same symptoms, except with rather stronger headaches.
If she wasn’t going through it with me, I would assume these symptoms signal the beginning of my terminal decline, as they’re pretty close to what I’ve been told to expect. Lisa’s had this for about ten days, I’ve had it for about three. So either a slow moving bug, or the hastening of my demise. Cheerful, eh?
We did have a very nice family-and-friends dinner yesterday afternoon. Lisa sat it out at home, due to how ill she was feeling, and I wound up leaving early for similar reasons. Team E— made smoked pork butt, Jersey Girl in Portland made two potato salads, mom made Moroccan sweet potato salad, while tillyjane and AH combined forces for a green salad and some challah bread. Plus various desserts.
Also, the_child came home last night from her East Coast adventures, but Lisa and I had zonked out by then, so I still haven’t hugged her hello and heard whatever stories she has to tell.
Laying low today, we’ll see what tomorrow brings.
Posted: 8:14 am Sun December 01 2013 | Comments(0) |
[cancer] Today we plan, tomorrow may never come
Today, mikigarrison is sitting down with me and Dad to prioritize the research she and Janet Freeman-Daily have done into clinical trials on my behalf.
I was thinking yesterday somewhere during our joyous and delicious family-and-friends Thanksgiving dinner how much the fact of my death distorts everything around me. It is a leaden weight on the fabric of my life, a singularity into which everything I am, I do, and I love, is slowly collapsing until my own personal event horizons swallows me up.
We are all born to die. I’ve just had the dubious privilege of examining my death in very slow motion, incrementally, for almost six years now. Everything that happens these days happens for the last time (probably). I go through the motions of my life because I do not know what else to do. And because I want to live tomorrow, I live today.
So today we plan.
Posted: 8:09 am Fri November 29 2013 | Comments(3) |
[personal] Giving thanks
Today is Thanksgiving here in the United States. For the rest of you, I suppose it’s just Thursday. But whether it’s Thursday or Thanksgiving, this is as good a day as any for giving thanks.
I am thankful to my parents and my family for bringing me into this world and setting me on a path in life which has been more than satisfactory.
I am thankful for the_child, who is the light of my life and the devilment of days, as it should be with children.
I am thankful for Lisa Costello for joining me in the last days of my life, and sharing love in a time which can be profoundly unloveable.
I am thankful for all the people who love me, and all the people I love. Friends, family, lovers, colleagues, the tribe here in Portland, Ken and John, my postal clerks, the guys at the Lamp and the whole team at Brooklyn Pharmacy — all you people who keep an eye out for me and check up on me and help me in ways ranging from tiny to life changing.
I am thankful for the publishing career I’ve had. I did not achieve even a fraction of my overweening ambitions, but I think if I had done so I’d be a smaller person than I am. One should always aspire to more. In any event, I have achieved so very much more than any rational hope would ever have dared, and for that I am very grateful to my mentors, my fellow writers, my agent and editors and publishers, my readers, critics and fans.
I am thankful for the life I still have, despite the terrible disease which haunts my body every day. I fully expect this to be the last Thanksgiving I ever celebrate, but it is also the sixth Thanksgiving since my cancer first came upon me. I am grateful to all the doctors, nurses, NPs, MAs, technicians, researchers, clinic staffers, and medically-inclined friends who have conspired to keep me alive even this long.
I am thankful to be here, and I am thankful you are here too.
Posted: 8:33 am Thu November 28 2013 | Comments(4) |
[cancer] An owie in my armpit
One of the usually minor cumulative side effects of my years of cancer treatment is my fragile skin. I cut and bruise easily, do not heal well, have a constant litany of rashes and zits and minor infections. Plus my extreme sensitivity to pretty much any form of adhesive. For instance, a Band-Aid can cause an open sore in a matter of hours. It’s not very pretty, and it doesn’t always feel good, but that’s life in Cancerland.
Under cut for medical TMI Read the rest of this entry »
Posted: 8:26 am Wed November 27 2013 | Comments(8) |
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