Sign up for my newsletter to be among the first to learn of upcoming titles!

[cancer|travel] Heading to Maryland, again

Dad, Lisa Costello and I are leaving this morning for 12/30 and 12/31 medical consultations at NIH. We are flying so early so as to avoid being trapped by possible weather delays over the weekend, and thus missing the appointments.

I will be seeing doctors about intake into two different trials. It’s our hope to have enough information to make a decision over the New Year’s holiday and sign up for one study or the other on 1/2/2014. At that point, we will then be able to evaluate our schedule for how long we will be remaining in Maryland.

I will update when I know more. If I do have significant time on the ground and am feeling good, I’ll make myself available for social opportunities in the Baltimore and DC areas.

[personal|cancer] Friends and aftermaths

Yesterday, [info]scarlettina came over to visit Lisa Costello and me and [info]the_child. She made her mother’s brisket recipe, then [info]davidlevine and [info]kateyule joined us for the consumption thereof.

It was fun to see them, and fun to hang out, but the aftermath was tough.

As dinner was winding up, I came down with a very bad chill. No shakes, no fever, nothing else along the lines of the opening salvo of a cold or flu. Just a bone-deep chill, and incredible fatigue. I wound up having to go off to bed and lie down under the blankets, the electric one cranked up all the way to high. After about an hour or an hour and a half, as I was finally falling miserably asleep, the chill abated somewhat.

This is the third or fourth time I’ve had one of these “cold flashes” in the past month. I’m suspecting ever more strongly this is a precursor of my body’s functional breakdown in the end stages of my terminal cancer. They come on when I am tired, underfed, or otherwise stressed, but they are neither predictable nor obvious. At least not yet.

It scares me, and it wears me out hard.

[cancer] Getting the brain MRI, the further adventures of Self-Directed Patient Man

Getting the brain MRI this past Wednesday was a pretty tedious process.

First of all, in the continuing tradition of a daily crisis in my life, just as I was sitting down to dinner with Lisa Costello, Jersey Girl in Portland and C—, the hospital called to tell me that their MRI machine was down and my appointment that evening was cancelled.

I had a polite shit fit about that over the phone. I explained that I am a terminal cancer patient going to NIH next week to try to enter a clinical trial which might extend my life. I explained that I needed the MRI performed, read and released to me by mid-day Thursday so I had time to request a disc from the Imaging Library and overnight it to NIH for Friday delivery, as this was part of my qualification process for the trial.

A few moments later the person on the phone came back and said that I qualified for the exception list. The other MRI machine was up and running, but they were so backed up that they were only scheduling people with critical and immediate needs. My 9:45 pm appointment was rescheduled for 9:45 pm, but on the other, still-working MRI machine.

Having dispensed with my weekly requirement for adrenaline surges (for about the fourth time this week), we proceeded to have our dinner and go for our soak at Common Ground Wellness Center. Then Lisa and I hied ourselves over to the hospital complex, because we figured being in the waiting area and thus undeniably in line for the procedure should something else go wrong was all to the good.

This resulted in us spending nearly three hours in a deserted waiting room in a deserted building at night. A few other patients wafted through. MRIs take a long time, so three hours was enough for two people before us. A rather put upon, but still appropriately polite and professional, tech made occasional appearances. Mostly we sat and played with our iPads and tried real hard not to fall asleep.

While I’ve had MRIs before, I’ve never had a brain MRI before. If you’ve never seen an MRI machine, rest assured that they are terrible traps for the claustrophobic or the circumferentially enhanced (I fall into that latter category myself). And frankly, much time spent in an MRI would drive anyone to claustrophobia. And they are noisy. Like Anvil Chorus noisy. Like sticking your head in a jet engine noisy. Something on the order of 125 dB clanging right next to your ears for however long you’re in there.

I was handed earplugs. A mask was put over my entire head that looked sort of like a cross between the Alien facehugger and something Dumas wrote about, rendered in the bland, taupe, pebble-finished plastic so beloved of technology designers. Pads were inserted around my head, after a brief discussion of how surprisingly large my skull is.

I then spent forty-five minutes in the tube.

Lately I’ve been meditating in the mornings. As a formal practice, I mean, not the lie-in-bed-and-groan-about-morning meditation that we all indulge in from time to time. So I meditated inside the MRI tube for forty-five minutes. Which is about like trying to meditate on the flight line of an aircraft carrier. On the plus side, the tech later reported that I held amazingly still, which helped them get good images as quickly as possible. On the minus side, I had my head in an MRI tube for forty-five minutes.

We also had yet another discussion of why I needed a stat read from Radiology, and what I was doing with the scan. The tech confirmed that I did indeed have a brain. The next day, Radiology confirmed that I did indeed have no intracranial metastatic disease. (This was the desired outcome.) After a certain amount of me calling around and cajoling people Thursday morning, I got my discs and sent them out.

Once again, I had to be pushy and pushy again. Self-directed patienthood is not for the faint of heart or unassertive. But combined with Tuesday’s CT scan adventures, I pulled two major medical procedures out of my treating hospital in two days. It sure helps that my providers have come to know me well, and understand that I’m not a loose cannon. It sure helps that my health insurance carrier covers this stuff without pre-authorization. It sure helps more that I know who to call and what to say.

At any rate, the brain MRI is in NIH’s hands as of yesterday afternoon, and I am still off at the end of this coming week.

[cancer] The adventures of Self-Directed Patient Man

Yesterday was very much the far side of nuts.

Let me explain.

No, there is too much. Let me sum up.

While I was in therapy yesterday morning, one of my National Institutes of Health contacts called, a research nurse who’s handling study recruitment. They left me a voicemail saying the Principal Investigator on one of the studies I am interested in would accept a CT scan from from my treating hospital within the last 30 days in lieu of trying to schedule a CT at the NIH facility on my arrival. (Grudgingly so, I gather.)

I knew I had an active CT scan order in the system at my treating hospital. The original intention of this order was for me to have my two-month screen in January — we’d been proactive about getting into the system. So after thinking this through, I called my treating hospital. I found out that my oncologist is on vacation next week. If I wanted the scan done and released to me in order to get a copy to send to NIH, it had to be done right away. Otherwise it would get stuck in my oncologist’s queue during their absence, and be of no use to me in my current timeframe. I wound up talking to Radiology scheduling, who said they could take me immediately if I could get there right away. (As it happened, in the course of this conversation I was driving north on I-5 very near the facility. Yes, I was using a headset.)

I cancelled my already-rescheduled lunch date with Jersey Girl in Portland and popped by to have the CT scan on a right-then basis. Afterwards, I went upstairs to Oncology and politely asked about having a stat read request put on the scan. I was also trying to figure out how to cue my oncologist to release the scan to me as soon as possible, as they do not have clinic hours on Tuesday. The team at the Oncology unit told me to call back into the triage line an hour or two after lunch and see about getting a message to my doctor.

I then spoke to the NIH nurse, telling them I’d gotten the CT done on-demand and was hoping for the results to be released that same day so I could get a disc from my treating hospital’s Imaging Library and express it to them. A rather hilarious conversation ensued.

NIH Nurse: “My jaw is on my desk. You are the most self-directed patient I’ve ever dealt with.”

Me: :: laughing :: “That’s a polite medical term for ‘pain in the ass’.”

NIH Nurse: “Nooo… That’s a compliment.”

They also asked me if I could get a brain MRI to check for mets that might have crossed the blood-brain barrier. This is quite rare in my type of cancer, but it is possible. I told them I was dubious about getting that ordered here in Portland, and we agreed they’d schedule the brain MRI at NIH, probably for the afternoon of 12/30.

I got the appropriate NIH shipping address for delivery of the Imaging Library disc, then focused on contacting the clinic about getting my oncologist engaged to review the new CT scan and release it to me ASAP.

As it happens, my oncologist had already seen and released the scan promptly, even before I had reached out about having them read it. They emailed me and asked me why I’d had the scan early, was it for the NIH studies? I replied that it was, and mentioned the brain MRI request. Meanwhile, the Imaging Library was cooperative about releasing a disc to me immediately. They only needed a 45-minute lead time. So Lisa Costello took me back over to the hospital complex to score the disc.

About then, my oncologist went ahead and ordered the brain MRI. (All of this was happening more or less in realtime at this point, while Lisa drove us back to to the hospital to go up the hill to the Imaging Library.) I got on the phone once more with the schedulers, who actually found me an opening this coming night. It’s awfully hard to get an MRI on demand, as there’s a long waiting list for access. I have a 9:45 pm brain MRI up the hill in the main hospital, which should take about 45 minutes. There is a stat read request on that order as well.

My oncologist has agreed to watch their queue Thursday morning, and release the MRI results to me ASAP. I will then make the request to the Imaging Library and get it back out to my contact at NIH that same day for Friday delivery, if my luck holds.

This should improve the intake process at NIH as they will have everything they need to proceed, or to scrub me from the study if they don’t like something in the imaging files.

By the time I got home again yesterday evening, I was so exhausted I physically hurt. I was also having at attack of the chills, which may have been exhaustion, a reaction to the CT dye, a system issue stemming from my advancing cancer, or all of the above.

As [info]mikigarrison said, I was blasting through the walls with my ray gun. Not sure I’ve ever dealt with medicine in realtime on a non-emergency basis.

I want to note, with respect to my recent comments about constant crisis and never being able to hold a schedule, that yesterday was a perfect example. I’ve now had to reschedule Jersey Girl twice due to unexpected medical requirements. I spent most of yesterday on the phone, running around town, or actually in a procedure room, on a day that had no medical activity on my calendar when I woke up other than my therapy appointment. I’d actually thought to have an easy day.

This is how my life works lately.

As for the substance of yesterday, while I feel pretty darned accomplished, I also recognize that all of these victories are fundamentally futile. The CT results were frankly quite depressing. We’re fighting rearguard actions in a war the outcome of which was confirmed last spring. This does not stop me from grabbing every chance I can, wringing what I may from each passing day. But last night when I was in bed shivering under extra blankets and feeling logy and strange, I kept wondering if all this was worth it.

So far the answer is still yes.

[cancer] Talking about dying and death

Yesterday, Lisa Costello, Dad and I met with my palliative care doctor. There was some discussion of my sleep issues, now essentially gone because I am off the Regorafenib. We also told them about our efforts at clinical trials. They were less interested in the medical details than in how I was experiencing the process. They talked about people who sometimes had better outcomes without entering chemo or trials at all. I pointed out that I had to be doing something or I’d go nuts.

Also had a long discussion of hospice options and how the place and manner of my death would impact [info]the_child. They provided a list of names of local hospice providers they held in high regard. Naturally, when I checked later, none of these providers were in-network for my health insurance.

We also talked about the difficulty of predicting life expectancy in my situation. The palliative care doctor said there are two main factors in their experience.

The completely unpredictable factor is when and how some catastrophic event occurs. For example, organ failure, or an opportunistic infection. There’s no way to anticipate the timing of such an event, though once it happens, I will likely pass very quickly.

The more predictable factor is rate of change, in effect. As they put it, if I am seeing significant changes in health or functionality that take place over the course of months, I have months yet to live. If I am seeing significant changes over the course of weeks, I have weeks yet to live. When the changes take place over the course of days, I have days yet to live.

Where these two factors intersect, clearly enough, is that unpredictable catastrophic event changing my health literally overnight, or over a day or two. At that point, my remaining life is likely measured in days.

This was both fascinating and sobering, and also one of the most useful descriptions of the dying process I have ever encountered. It neither gives me hope or incites despair, but it does grant me some perspective.

The palliative care doctor wants to continue to see me as I progress through the clinical trials process, every two or three months. I told them we would keep them informed. Our current followups are to check my hospice benefits with my health insurance carrier, figure out which Portland area facilities are in-network, and schedule some site visits. I’ll schedule another visit with my palliative care doctor once we know more about my clinical trial schedule.

[cancer|personal] Trapped in a whirling morass of urgency, as my friends grow ever more distant

Last night I dreamt something long and complex, which is now lost to me. However, at the end of it, I was in a coffee house on a college campus somewhere. It was indoors, part of a student union building or some such. The students around me were of various ages, and one or two had small children with them.

I’d been drinking hot chocolate and reading. It came time to leave so I began to pack up. As I wound my scarf around my neck, my hat fell off. When I bent to pick up my hat, my gloves slipped out of my coat pocket. I couldn’t fit all my stuff into my pack. And so on.

Around me the coffee house was closing up. As people left, they kept dropping things too. I started trying to collect the other lost belongings in the hopes of returning them. The barista was pushing the tables to the back and stacking them so she could mop the floor. My table disappeared, and most of my stuff with it. I kept running around desperately trying to retrieve everything. I only succeeded in dropping more and more of what was in my arms, most of it not even mine.

It doesn’t take a psychology degree to work out the meaning of that. No more than most of my dreams. And this has been my week. If there is no significant crisis or disaster in my life today, it will be the first day since last Sunday for which that has been true. I have rushed from one problem to the next, solving few of them, and seeing most of them generate more problems like a runaway software process spawning malign threads.

Such is my life these days. This week has been an unusually pointed example. But in all seriousness, Lisa Costello estimated recently that based on the experience of the past few months, even on my best weeks I cannot get any three days in a row without something overwhelming happening.

This distraction factor spills over into everything. Ever since the cancelled trip to Europe, I have been unable to schedule social time with friends. The big stuff is more obvious — because my medical schedule keeps shifting so randomly, I cannot make commitments to out-of-town friends who need lead time to arrange work vacation days and procure plane tickets. Less stringently, I can’t even commit to Seattle friends who can be more flexible because they’re driving or taking the train or the Bolt Bus.

But even the local stuff gets killed. I’m going to Maryland at the end of the month to see about two different clinical trials at the National Institutes of Health. That means I won’t be here for my December 31st appointment with my palliative care doctor. They’re impossible to see on short notice, so I had to take a reschedule for Monday, December 16th. Exactly when I had a midday date with Jersey Girl in Portland. Her daily/weekly schedule and mine are so misaligned even normally that when I have to cancel with her, it can take us weeks to reschedule.

I can’t keep up with anything anymore, not with the absolute priority of maintaining what’s left of my life and health, and the resultant very erratic and frequent scheduling demands of that process. So my out of town friends slowly stop offering to come see me because I can never commit to a time. Most days I’m too rushed and fuddled to even be smart about keeping up emails or texts or phone calls whatever, so it’s harder and harder to maintain my relationships even remotely. My local friends get used to me cancelling and being unable to reschedule easily. My life narrows a bit more week by week, as it does in so many other ways.

My attention span degrades, my social availability degrades, and instead I am trapped in a whirling morass of urgency. I hate this.

Welcome to late stage cancer, Jay.

[cancer] More on clinical trials, plus the existential weirdness of health insurance carriers

I now have a screening and intake appointment at the National Institutes of Health (NIH) in Bethesda, Maryland, on December 30th. Due to a combination of flight availability and a desire to have a margin of error in case of severe weather issues, Dad, Lisa Costello and I are flying east several days earlier. As we are working on multiple tracks at NIH, both through the National Cancer Institute (NCI) and elsewhere within NIH, I will wait until more is resolved before detailing those steps and what’s involved in the proposed studies.

It’s been quite an effort to get this far. Phone calls all over the place, lost forms, conversations with doctors both here in Oregon and at the NIH (the latter by telephone, obviously), me having to personally and politely poke the Pathology department at my treating hospital, records, timing. Amazing stuff.

In the mean time, I am not entering a trial here in the Portland area which was under consideration. One of the side effects they are researching is severe psychological disturbance, and given my long-term mental health history (severe chronic depression with a teen-aged suicide attempt) we all felt I was a poor candidate. Also, other trial leads keep bubbling up.

Yesterday there was a moment of irony so deep you could have forged it into a plowshare. I was on the phone with UnitedHealthcare, my health insurance provider. We were discussing benefit coverage for clinical trials. According to UHC, coverage for the routine care portion of clinical trials — meaning everything but the cost of the drugs or procedures being tested, basically — is a requirement of the Affordable Care Act, a/k/a Obamacare. (So chalk that right up to another thing Republicans want to strip away from the sick and the dying.) I am covered just as I would be for those same procedures are part of ordinary treatment, assuming the site where I am being treated is in-network.

Yay, says I.

Not only that, I am told that UHC covers travel expenses including airfare and lodging, to seek clinical trials more than fifty miles away from my home.

Yay, says I.

There’s only one catch. The clinical trial in question has to be approved on a case by case basis for the routine care coverage, the primary criterion being that the trial meets NIH and NCI guidelines. Well, since I’m going to the NIH and the NCI, this seems like a no-brainer.

Yay, says I.

There’s only one other catch. The travel stipend is valid only for clinical trials taking place at UHC designated “Cancer Centers of Excellence.” This is mostly places you’ve heard of, like the Mayo Clinic, Johns Hopkins University, M.D. Anderson Cancer Center and so forth. Well, it doesn’t get much more excellent than NIH and NCI, institutions which had already been cited as the reference standard for the validity of clinical trials.

Yay, says I.

Not so fast, says UHC. NIH and NCI are not considered a “Cancer Center of Excellence” by my health insurance carrier.

WTF, says I. Your own gold standard for clinical trials isn’t a center of excellence for clinical trials?

Nope, says UHC.

So, no travel reimbursement. (This is not as bad as it might seem, as I am likely eligible for a stipend from NIH. It’s just weird.)

And actually, I do sort of get where they’re coming from. The “Cancer Center of Excellence” policy at UHC has broader applications around second opinions and treatment choices. NIH and NCI aren’t treating hospitals, they’re research institutions. The doctor:patient ratios are very different, the available bed counts, etc. Whatever the metrics are, they have to be skewed.

It still seems very strange to have a benefit for clinical trials, including travel, and not consider the pre-eminent cancer research institution in the United States an eligible destination to provide clinical trials. Oh, well. At least NIH and NCI are in-network for my carrier.

At any rate, we have an appointment, and we shall go, and we shall see what happens.

[cancer] Yesterday, all my troubles seemed so close at hand

Yesterday was a difficult day. It began with early morning phone calls to the NIH in Maryland, and ran all day in a tight chain of events, almost everything behind schedule (my oncologist was an hour late), each missed time slot impacting the next. Appointments, meetings, consultations. Many of them with frustrating outcomes. The kind of day with a lot of irritating and difficult moments, and no time between to recover and process what happened before proceeding to the next.

On the plus side, [info]mlerules got me to a nice dinner with Lisa Costello at Podnah’s Pit BBQ, followed by a nice soak for the three of us in the spa at Common Ground Wellness Center.

This, of course, following Monday’s travel madness, and a Tuesday just as filled with appointments and frustrations. I had higher hopes for today, but so far today’s pretty much following the template for the week.

This whole disability thing? I’m busier and more stressed than I was when I was working full time. How the hell does that even happen?

[cancer] Overwhelmed, I melted down again

Yesterday evening I lost it again. There are pressures on my life I don’t talk about in public, because they are not my story to tell, but they are running very high. Plus my luggage is still missing, even though it was supposed to be delivered yesterday. Plus I lost my phone under weird circumstances, which even though I found it again left me feeling very foolish and incompetent. Plus a productive but sobering discussion about clinical trials with a research oncologist yesterday. Plus a missed meal (due to a fasting glucose check in lab) which put me off for the day. Plus the whole dying of cancer thing. Plus plus plus plus.

So, yeah, some days the hamster wheel in my head breaks loose and rattles down the highway, carrying me with it screaming all the way.

Lisa Costello held me and put up with snot everywhere and us going without sleep because naturally all this occurred (relatively) late in the evening.

I’m still here, but it’s a damned hard life, even on the best days. Yesterday was not one of the best days.

[personal|travel] Leaving Omaha for the last time

More weird, restless sleep, with weird, restless dreams. Something about the weather, or the heater in my hotel room, or my unsettled spirit, has kept me awake nights. This time it was vehicular arson as part of some large coverup, except I was very bad at cleaning up evidence of my misdeeds. The car in question in my dream was my first car, an orange 1976 Datsun 710 station wagon I drove in college. Not hard to interpret what that means, really. All in keeping with the melancholy of my visit here.

A friend who has been out of town all this past week is meeting me for breakfast, then taking me to the airport. American Airlines yesterday cancelled my flight this morning. Getting rebooked involved spending over an hour on hold with the Aadvantage Platinum desk (apparently hold times for the main desk were running closer to twenty-four hours). I am dubious of my new connection through Chicago O’Hare, mostly because of ORD’s chronic problems with delivering timely wheelchair transfers. Basically, in my experience they are incapable of doing so at that airport.

None of that matters so long as I get home tonight. Today is Lisa Costello‘s birthday, the last one I will likely ever be alive for, and I’d like to see here thereupon, and I have two oncology appointments tomorrow. So, yeah, this terminal cancer patient really needs to get home today.

Even so, my weather karma has brought not only deeply subfreezing temperatures and inches of snow to Omaha, it appears to be doing the same to Portland today. Unseasonable here in Nebraska, almost unheard of their in our part of Oregon.

And I’ll have the long trip home to think about how I feel about having been here one last time.

Wish me luck, I’m going to need it.