[travel|cancer] My misadventures getting home yesterday to see the doctor today
There’s no real way to make a coherent blog post out of this, so you’ll have to settle for a bit of narrative.
Getting home from Omaha yesterday was an epic effort, but I made it. My luggage did not. My irreplaceable Mongolian camel fur hat apparently did not, though there’s some hope I absent mindedly packed it into my luggage (which I never do on purpose).
I had five different flight itineraries yesterday. That is to say, at different points in the process, I was booked on five different flights out of Omaha before I finally managed to leave. American cancelled my original route through DFW on Sunday, the day before I was to fly, due to extreme weather in DFW more or less crashing their operations. I was rescheduled to a Monday flight through ORD.
When I got to the airport in Omaha early, they rescheduled me again at the check-in desk to an earlier flight through ORD, to help me make my connection to PDX. That flight began posting later and later, until was both later than the flight that came after it which I had been previously scheduled on, and late enough to make me miss my connection at ORD. It was also clear the later flight was going to be postponed.
I went to the American Airlines counter agent and said, “Look, I’m a terminal cancer patient. I have two oncology appointments tomorrow. I have to get home tonight. Can you reschedule me through Denver on another airline, since both Dallas and Chicago are such a mess?”
They’re not really supposed to do that when they still have available seats in their own system, but he poked around and was very helpful, placing me on a set of Frontier Airlines flights that went OMA-DEN, then DEN-PDX. Since I’d already checked in, he called down to the American baggage room and had my bag transferred to Frontier.
The earlier Frontier flight was full, so I wasn’t leaving til that evening. Then Lisa Costello texted me that the evening flight had posted a two-hour delay, which would again make me miss my PDX connection, stranding me in DEN. I went up to the Frontier gate agent and told him the same thing I’d told the American agent. He put me on stand-by, then got me on the plane in their ‘stretch seating’, which is what Frontier has instead of First Class. I’m pretty sure they’re not really supposed to do that, either, especially since I wasn’t even a Frontier customer in the first place.
I finally got on a plane leaving Omaha, my fifth scheduled flight out. I have no idea what happened to my bag at that point. My connection in Denver going to Portland was almost two hours late, but I got out of Denver and home last night. Frontier has no idea where my bag is, because I do not have a Frontier Airlines bag check tag, due to the interairline transfer back in Omaha, and they can’t trace it through the American Airlines bag check tag. We’re hoping it came in overnight from Omaha via Denver, but given the other delays, it may still be languishing in Omaha or in Denver. As me getting home was the critical issue, I am not grumpy about this. I would like to see my bag again sooner or later.
At any rate, on a day when well over a 1,000 flights were cancelled, thanks to the flexibility of two gate agents, one for American Airlines and one for Frontier Airlines, I got home. My first oncology appointment is at 8 am this morning, my second is this afternoon. I will make them.
So my thanks to both airlines.
Now I’m off this morning for some bloodwork preparatory to tomorrow’s monthly consultation with my medical oncologist. This afternoon I have a screening and intake appointment for one of the clinical trials I am trying to engage with. Overnight has brought the Portland area radically unseasonal snow and ice, which will make getting around today a lot more exciting than it should be.
But I’m here, and I can make it in to my appointments. Thank you American, and thank you Frontier.
Posted: 7:39 am Tue December 10 2013 | Comments(0) |
[cancer] Being in the world
Being here in Omaha, being in the world at all, keeps stirring my thoughts of mortality. My dreams these days are almost always about incompleteness, failure and error. Comically so sometimes, some nights a tragedy in six REM cycles. I feel like I am digging my own grave, slowly.
I am so very glad to be here, and so very sad to be here. Which in truth is how I feel about almost everything these days. Fortunately for me, it’s my nature to enjoy myself most of the time. Even when the grim dusk of my own death casts shadows across all my words and deeds.
We all die. Most of us spend most of our lives assiduously ignoring that most basic fact of human existence. I keep trying to convince myself that my own enforced awareness of my ending is a gift.
On occasion I succeed.
Posted: 7:27 am Sat December 07 2013 | Comments(1) |
[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) |
[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) |
[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) |
[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) |
[cancer] Field notes from Cancerland, Thanksgiving week edition
My test for the P13K mutation was negative, so I do not qualify for the phase one clinical trail available at my local hospital. We are also continuing to run into minor issues regarding my KRAS mutation status. As long time readers may recall, while I do have a KRAS mutation, it’s not one of the common ones, occurring in less than one percent of cases. So treatments and studies which call for a KRAS wild type patient don’t fit for me, as I am KRAS mutated. Treatments and studies which call for a KRAS mutated patient don’t fit for me, because I don’t carry one of the common, well-studied variants. Neither one nor t’other.
Phase One Clinical Trials
We continue to search for phase one clinical trials for which I do meet the qualifications. My science advisory team is using clinicaltrials.gov, as well as medical literature searches and other resources. Dad and I will be sitting down later this week with mikigarrison (who in her other life is a medical researcher and medical school professor) to review the outcome of those searches. Plus I have a call today with the National Cancer Institute to discuss study qualifications and intake.
There are a lot of nuances to this. All our study options are extreme long shots. And logistics has a significant impact. For example, how far I’m willing to travel for a study is in part a function of how long I have to be there. I don’t see much point in spending what’s left of my foreshortened life away from the_child and Lisa Costello and my family. Likewise, treatment modalities. Chemotherapy has never had much effect on my cancer, so I’m personally biased towards studies that take some other approach, just for the opportunity to try an entirely different treatment course. And so on, and so on.
It’s complicated. So very, very complicated.
I spent part of yesterday going over funeral planning with Dad and kenscholes. Dad and I then went to a funeral home to talk about specific options and requirements, and look at the memorial garden and the (vast) mausoleum. Which if I were not the principal would all have been quite fascinating.
We now know we have up to eight hours to have my body removed from my place of death by the funeral home. Given that I do not wish to be embalmed, cremation has to take place within seventy-two hours. The cremation chamber has a witnessing room so the survivors can watch my body be placed into the retort. Burning takes two to three hours. We’ve had extensive discussion about disposition of ashes, and where to place a marker. Current discussions include whether the marker will be a stone or a bench, but in either case it will be in the memorial garden.
The question of funeral/memorial services got complex. I think there will be three. One very small and private at the time of death and cremation, one slightly larger for family and close friends just after cremation in the memorial garden, and a much larger public memorial later on for my wider range of friends, fans and colleagues, probably at a West Coast convention.
Like everything else about my dying process, all this takes time, money and trouble. Better to be thinking about it now, and setting the basic decisions in place, than to force my loved ones to rapidly piecemeal something together later on.
Posted: 7:51 am Tue November 26 2013 | Comments(0) |
[cancer|religion] Faith, science and the afterlife
I put my stick in the faith-and-reason hive yesterday again, in comments on this post, and then on my Facebook presence here.
What I said in the blog comments was:
Actually, we have perfectly good physics that refutes the existence of the afterlife. It’s called entropy. You or anyone else has an extremely high burden of proof to surmount in order to counter that with objective evidence.
As for metaphysics, that is of course another word for faith, which rarely if ever has validity outside the individual faithholder’s frame of reference.
I am curious, as you challenge my statement of basic truth as if it were ragtag belief system. What objective, repeatable evidence does exist for the survival of self beyond the death of the brain?
I’m talking testable, empirical evidence, not scripture and faith statements. Faith can be a bedrock truth in the private universe of the individual that holds it, but articles of faith very rarely translate into characteristics of the physical universe we all inhabit
I then vented on Facebook with this comment:
Claiming we don’t have enough science to disprove the afterlife is like denying evolution. It’s a defect in your education, not in science.
Pretty much every time I get into this topic, people seem to think I’m denying the power or value of faith. As I said downthread in that Facebook post:
I have an immense respect for faith and its power. I have a profound disrespect for confusion between the truths of faith and the truths of testable, empirical reality
As one might imagine, my interest in the experience of death and dying is much sharpened of late. However, I’ve had this basic issue on my mind for years. Science is a process, a mode of thinking. It’s not some institution with the power to bury some ideas and elevate others. If there were some testable, provable hypothesis about survival of the self beyond the clinical death of the body, the medical journals would be full of it. That is, after all, one of the central questions of human culture for as far back as we have any history of human culture to evaluate.
But the whole burden of proof of afterlife is on those who would assert that as empirical reality. Science can no more disprove the afterlife than it can disprove the existence of pink unicorns. Less so, in fact. The question is a logical null.
However, to state the simple truth that there is no evidence of life after death is profoundly offensive to many people, and profoundly discomforting to many others. Speaking as someone who’s wrestling with precisely those fears, I say tough shit to them. It’s not a disrespect to your faith to state that your faith claims have no empirical basis. The universe doesn’t care if you’re Catholic or Hindu or Voudoun or Seventh Day Adventist or an atheist or what. It functions perfectly well without the lens of faith. In fact, the universe functions precisely as well without faith as it does with faith.
But human hearts and minds do not. What to me is an obvious conflation of wishful thinking and faith narrative is to others a truth so profound as to be indistinguishable from the sunrise or the tides or the fingers of their own hand.
Which is precisely my point. Privileging one’s faith narrative so strongly that one views science as unable to answer faith questions is a failure of one’s own education and worldview, not a failure of science. The process of science can test the assertions of a faith narrative as easily as it can test assertions of chemistry and physics.
The whole purpose of a faith narrative is not empirical testability. One does both science and faith a disservice when one tries to hold faith up to the standards of science.
Think of it this way. Science works in a completely testable, repeatable manner for anyone, anywhere, with the right education, data and equipment. Faith is so profoundly individual that there are about 41,000 Christian denominations in the world, and thousands, possibly tens of thousands of other religions. Many if not most of them proclaim a monopoly on the truth, but they cannot each and all in their tens of thousands of revelations be in sole possession of the truth. To hear most religionists tell it, only one faith can be right. Theirs. In other words, faith is not testable and repeatable for anyone, anywhere; rather, it is profoundly individual.
Very nearly the opposite of what science seeks to do.
Meanwhile, I’m still dying. When I’m dead, I’ll still be dead. If 40,000 years of human history and culture haven’t managed to come up with any repeatable, empirical evidence to the contrary thus far, I don’t think the next six or nine months are going to make much difference now. Regardless of anyone’s sincerely held beliefs. Or their irritation at my pointing out the obvious.
Posted: 7:53 am Mon November 25 2013 | Comments(15) |
[cancer] A bit more on CEA levels
For those of you who might be curious about the continuing progress of my CEA levels (a key blood marker for tumor activity with my type of cancer), as previously reported here: [ jlake.com | LiveJournal ], they continue to climb, though not at a doubling rate. At least for now.
There’s nothing surprising about this, of course, as it is consistent with my recent CT scan results and the trend in my CEA levels since last spring.
So it goes. I stumble another few steps closer to my own death.
Posted: 7:44 am Mon November 25 2013 | Comments(0) |
[personal|cancer] Doing stuff, keeping busy
the_child is off this evening with her aunt and cousin to visit her uncle and his fiancée in the DC area. Thanksgiving week will be relatively quiet hereabouts because of this, though we are apparently doing our damnedest to make up for it.
A very longtime friend of Lisa Costello‘s is visiting for the week. She arrived yesterday, and will be enjoying both our Thanksgiving dinners with us, Thursday and Saturday.
Tomorrow I have multiple appointments including therapy, lunch with kenscholes and my dad to discuss funeral arrangements, and a visit to a funeral home to talk about cremation and various placement options for a memorial marker. So jolly.
mikigarrison arrives Thursday, also to enjoy both our Thanksgiving dinners, and to spend the Friday between with me and Dad going over my clinical trials options in excruciating detail. Also jolly, but important in any attempts to postpone the funeral.
On the plus side, I knocked down more of my to-do list last week, such as getting the car titles transferred into Mother of the Child’s name so they don’t get caught up in probate. Yesterday, I went with the_child, mlerules and her cousin J— to hear Peter S. Beagle talk, and see The Last Unicorn [ imdb ], that last through the good offices of a dear friend in California. The forthcoming Thanksgiving dinners promise to be pretty awesome. And week, unless medical necessity intervenes, I am going back to Omaha for one more visit with friends and former colleagues there.
So, yeah. Busy.
Posted: 8:48 am Sun November 24 2013 | Comments(1) |
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