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[cancer] Fundraiser: Science Fiction Author on Trial

It must be the season or something. I’m back off to NIH on Tuesday for surgery followed by some extensive and fairly brutal immunotherapy. As recently discussed, this is a very expensive process for me and my family. Not the treatments themselves, which are covered by NIH at no cost to me, but the expense of having my caregivers in Maryland for five weeks while I am being treated. Not to mention the expense already incurred during our two-week visit for enrollment.

I’ve discussed the costs in general here, and in more detail here. I’ve discussed what we’re doing, clinically and scientifically, here.

Shlom Ster has been kind enough to put together a fundraiser on, where we held last year’s Sequence a Science Fiction Writer fund raiser. This year, we’re calling it Science Fiction Author on Trial (NIH trial, that is!).

Premiums are still being organized. There has been some excellent generosity from various donors, and I’ve put a dozen copies of The January Machine in myself. Hopefully by Monday that will all be up on the fundraising site.

I have very mixed feelings about tapping the generosity of my friends and fans again, but this is where we are. Still fighting for my life, slowly losing, but trying everything we can.

Thank you to everyone who gave last year, to everyone who’s already given this year (there has been some startling and heart warming generosity), and to everyone who’s helping pass the word.

[cancer] Field notes from Cancerland, calm before the storm edition

Getting out in the world

Yesterday I went into an audio studio and spent about 75 minutes recording intros from the edition of my short story collection The Sky That Wraps. That was fun to do, and it reminded me briefly of the feeling of being a working creative. Damn, I miss that. Sometime later this year, you’ll be able to hear my sonorous tones for your very own self.

Pre-Operative Hypochondria

As previously mentioned, my vulnerability to respiratory infection is critical right now. It’s not that I am immunocompromised (yet), it’s that if I fall ill, I’ll miss my surgery date. Which could literally be a life-or-death issue for me. This means that my usual oncological hypochondria has been epically trumped by pre-operative hypochondria. Hypervigilance, as it were. I have become incredibly sensitive to even the most minute shifts in my somatic self and my sense of well-being. It’s making me freaking paranoid.

Oncological Hypochondria

Don’t worry, the oncological hypochondria is alive and well. I haven’t had a cold flash yet this week, but they still occur. Blood tests for thyroid function and testosterone levels show no evidence of problems there, so we’re still on the “evil humors of the cancer” theory proposed by my palliative care doctor. And the low-grade pain in my right side has grown unceasing in the last two weeks. It used to be mostly related to stress or fatigue, but now it is always present. One of the NIH doctors suggested I might be feeling discomfort in the liver capsule from the tumor growth. Given the general timeline my body is on, this seems highly likely. So, yeah, I’m feeling it every day now. Another milestone on that final journey.

The next stages of my health

I hope on a plane next Tuesday and fly back to the DC area for admitting to the NIH hospital that evening. Next Thursday, one of my lungs will be resected. I will flow from post-operative recovery into the three week (or longer) hospitalization for the immunotherapy process. That in turn will require at least a month of recovery, characterized by, at a minimum, extreme fatigue and some lassitude. So I’ll be home in late February or early March, quite ill from the treatments. By then my terminal decline should be progressing nicely, and I will also be ill from that process. In other words, I’m back at a point I’ve faced a number of times these past few years, of realizing I will never again be as healthy as I am today. That is sobering and painful.

The emotions

The emotions, they are difficult. I’ve actually held my shit together pretty well on a minute-by-minute, day-by-day basis lately. No meltdowns, no tantrums, at least not to speak of. But my sense of fear and desperation grows. It’s a cancer of the soul which mirrors the cancers of my body. Lisa Costello and I had a moderately strange discussion over dinner last night about this process, and where acceptance falls in play. This specifically touched on how well the Kübler-Ross model applies to someone who is dying. As I said to her, “We’re about to have a relationship spat over epistemology.” Let’s just say that Lisa and I have very different ideas about what acceptance means. At any rate, this is the hardest thing I have ever done. There is never any respite.

[cancer] Dying angry

Equal praise is due to those who accept an inevitable fate with grace and courage.
— Steven Goodman, quoted in Bill Keller’s poorly-researched and sloppily written New York Times column on cancer and death and patient activism, January 12th.

I’ve written before about hope, despair and the cult of optimism in the realm of cancer care. There’s a cultural expectation that we who are in such dire medical straits are to be positive and noble. This certainly makes life easier for family, caregivers and clinicians. There’s even some medical evidence that patients with positive attitude receive better care, presumably in part because they are easier and more emotionally rewarding for providers to deal with. (Sorry, having trouble finding the right link this morning — I will add later if it turns up.)

Understand that I don’t dispute the value of a positive attitude in people for whom it comes naturally. But insofar as I can tell, the only objective reason such an attitude is urged on patients is so that they’ll pursue their care diligently, take their medications, turn up for tests and appointments, and so on. Everything else seems to be about smoothing the path.

You can also make a quite reasonable philosophical argument about acceptance. But let me tell you, as a terminal cancer patient, my entire life is Kübler-Ross on fast spin. Acceptance doesn’t come naturally, and for some of us, is closely akin to surrender.

There’s a great deal of cultural pressure to accept the inevitable. To be optimistic and graceful. To suffer in quiet and noble silence.

Tell that to the cancer.

Cancer and its treatments are messy. They are painful. They are humiliating. Cancer undermines everything a patient knows about their life, their love, their place in the world. And for far too many of us, cancer steals away everything in end, ushering us into death years, decades, even generations before our time.

Why the hell shouldn’t we be angry? Why the hell shouldn’t I be angry? I am losing my life. I am losing my place in my daughter’s childhood and young adulthood and her future. I am losing my family, my friends and lovers, my writing. I am losing myself.

And when I say angry, I’m not talking about Dylan Thomas’ almost genteel rage against the dying of the light. I’m talking about a good, old-fashioned, trash can-kicking, screaming shitfit.

Damn it, of course I’m angry. Anger has kept me alive, kept me going, kept me dedicated to everything I can do to survive a little longer. I live angry, and I will die angry. Being me, I generally channel that anger constructively. I don’t actually kick trashcans or yell at people or throw tantrums. But it keeps me going, and I cannot pretend it isn’t real, dark and fiery down to the core of my soul.

And I will not moderate that anger to ease the feelings of some sanctimonious twit at the New York Times, or anyone else.

Live well, die angry. What else can a terminal cancer patient do?

[cancer|culture] Talking back to the Kellers

On Wednesday, January 8th, Emma Keller, who writes for The Guardian, published a piece called Forget funeral selfies. What are the ethics of tweeting a terminal illness?. (Note, the piece has been taken down, The Guardian simply stating, This post has been removed pending investigation. Apparently Ms. Keller may have breached confidentiality.)

On Sunday, January 12th, Ms. Keller’s husband Bill Keller, former executive editor of the New York Times, wrote a companion piece entitled Heroic Measures.

Both pieces focus on a late stage breast cancer patient named Lisa Bonchek Adams, who communicates via Twitter about her experiences with increasingly aggressive and invasive breast cancer.

A lot of digital ink has already been spilled on this. I linked to one piece a day or two ago, reading both Keller posts at that time. (This was before Ms. Keller’s was taken down by The Guardian.)

I don’t see any particular ill intent in either post. I don’t see deliberately cruelty. I do see some honest attempts at grappling with extremely difficult questions about healthcare costs and decision making and the morality of personal care decisions and the weight of dying.

I also see a profound lack of empathy and self-awareness. I also see a wistful nostalgia for a simpler time when death was a private, even shameful, matter about which no one but the principal and those closest to them had to be embarrassed or made to feel uncomfortable. I see two people who apparently enjoy the wholly transparent privilege of good health being judgmental about those of us in this age of social media on the dark and final journey.

On mourra seul, Blaise Pascal wrote. We die alone. The context for that statement in the posthumous 1669 publication of Pensées was very different than today, but it still rings strong and true for me. Though cancer is, as I have said many times, a social disease that strikes at the hearts and minds of everyone around the patient, in the end, each of us suffers the ultimate extinction as a solitary experience.

But the road to that death… That road is a road each of us can choose to share or not to the limits of our own needs, our own privacy, our audience, our hearts. That two wealthy, healthy people with global soapboxes stand back and pass judgments about the lack of heroism inherent in making a public spectacle of one’s death is both foolish and insulting. And like almost everything else that happens in our cancer journeys, it is inhumane.

There is no special heroism in suffering in silence, as Mr. Keller tries to tell us. There is also no shame in suffering in silence, as Mr. Keller seems to believe people like Lisa Adams and me are saying. Everyone’s journey is their own. Everyone’s degree of openness is their own. In a context like this, concepts of “TMI” and “oversharing” are entirely in the eye of the beholder.

You don’t have to read any of this.

Bill, Emma. If you don’t want to see the spectacle, don’t look. It’s not like Lisa Adams or me or anyone else in our position has, oh, say, to pick an example totally at random, a column in one of the world’s leading daily newspapers. We each tell our own stories for our own reasons. People heed those stories for their own reasons. Our privacy boundaries are where we set them, your reading boundaries are where you set yours.

Surely those of you with powerful voices that project across the world stage have better things to do with your time and resources than assuaging your discomfort at the hard facts of life and death by moralizing about other people’s pain?

[cancer|science] The study in which I have enrolled

I now have permission to talk in such detail as I am capable of about the Phase II clinical trial in which I have enrolled at the National Cancer Institute at the National Institutes of Health.

The study is number 10-C-0166, “A Phase II Study Using Short-Term Cultured, Autologous Tumor-Infiltrating Lymphocytes Following a Lymphocyte Depleting Regimen in Metastatic Digestive Tract Cancers.” The principle investigator is Steven A. Rosenberg, M.D., Ph.D. of NCI.

This is a immunotherapy study. Immunotherapy, as previously discussed, has been my preferred treatment modality for a clinical trial. Many if not most clinical trials for cancer are focused on refinements or new developments in chemotherapy, but in my case, chemotherapy has only ever been moderately effective at best.

There’s a class of white blood calls called tumour-infiltrating lymphocytes, or TILs. These are healthy cells from the body’s immune system which can be found inside of tumors, but in an inactive state with respect to immune response. Loosely speaking, what this study does is harvest TILs from one of my tumors, grow them in a lab to volumes many orders of magnitude larger than they would normally be found in my body, return them to my body and activate them pharmaceutically. The general idea is that these TIL cells, which already know how to find their way into the tumor tissues, will return in those fantastically larger numbers and halt tumor growth as well as inducing shrinkage.

It’s an approach that apparently works well in the mouse model, as well as in the petri dish with human cells.

This has been tried on human subjects with advanced melanomas to a reasonable degree of success. That was the initial phase of this trial. The trial has since passed in Phase II, with a larger melanoma patient cohort, but the investigators have also added a gastric cancer cohort. I will be the first metastatic colorectal cancer patient in the trial, though they have seen significant success with a closely related cancer.

While I was at NIH last week, I underwent apheresis to harvest white cells for the TIL growth medium.

I have now been formally scheduled for a thoracotomy on January 23rd. I will be flying back to the DC area on January 21st to be admitted to the NIH hospital for this procedure. The thoracotomy will probably be a wedge resection, though the teams have not finalized which lung. I have candidate tumors in both lungs, but there’s trade-offs to each approach. The left lung has a better tumor from their perspective, but the surgical team is concerned about possible adhesions and scarring from my 2009 left thoractomy. The right lung has an adequate candidate tumor (two of them, in fact), without the potential complications.

Once the tumor tissue has been harvested, it will be taken to the laboratory where TIL cell extraction will take place. TIL cell growth to the required volumes takes at least three weeks, sometimes longer. This means that around or shortly after February 13th I will begin my TIL cell infusion process.

In the mean time, I need to recover from the lung surgery. Once they have gauged the growth rate of my extracted TIL cells, the doctors will confirm a target date for the infusion process. I will actually return to the hospital about eight days prior to that target date, possibly as little as a week or ten days after my post-operative discharge. There is a seven day non-therapeutic chemotherapy process which I must undergo with the specific intention of wiping out my immune system in preparation for the TIL cell infusion. This will result in me being profoundly immunocompromised for a while.

That in turn means the TIL cells will be essentially the only thing working in my immune system at the time of infusion. I will receive them for one to five days, depending on my response, along with helper drugs to facilitate both their growth and survival. I will then spend about another two weeks in the hospital while my immune system recovers.

I will return to Maryland periodically for follow-up assessments, perhaps once per month. There is no set end date for this process. The investigating team will continue to monitor me so long as positive results can be identified — that is to say, tumor shrinkage without a significant rebound of the growth rate.

This is a “one shot” treatment, though results can manifest for months, even a year or more, if it is successful. The list of risks and potential side effects is frankly frightening. That is in part due to the complex of multiple drugs, each carrying its own list of issues. I will be very fatigued for weeks afterwards, and may have trouble with my immune system for some time to come.

This is also a pretty low probability effort. Only about a dozen gastric cancer patients have been exposed to this protocol. Desperate measures, if you will, for desperate times.

On the other hand, this is Very Big Science. The cutting edge of cancer treatment, at the most prominent biomedical research organization in the world. I’m not going to get much better than this.

I’m excited about the possibilities for my health. I’m excited about being part of Very Big Science. I’m excited knowing that whatever happens to me, this study could eventually help treat or even cure untold numbers of cancer patients. As awful and deadly and sobering as my cancer journey has become, this is also cool.

Like I’ve said before, the war was lost a while back. We’re just still fighting battles because I have been too stubborn to die. With any luck, this battle will buy me another six months or a year on the front lines.

It’s expensive. Lisa Costello, Dad and I have spent just under $9,000 out of our collective pockets already simply to get me to this point — that was the cost of our two weeks at NIH, including airfare, hotel, rental car and food. NIH provides some reimbursement, but it offsets less than 10% of that cost. We’ll spend about that much again over the next six or seven weeks as I transition through the stages of this clinical trial. Shortly I’ll be passing the hat again, though I’m going to need some help to set that up. Watch this space for details.

Meanwhile, this science fiction writer is diving into Very Big Science to try to stave off death a little longer.

Thank you for coming along even this far.

[cancer] The stakes get higher, the cards grow weaker

One of the issues I’m wrestling with at the moment is that I have a thoracic surgery date of January 23rd, ten days from now. This date is contingent on some low-probability events out of my control (for example, a scheduling conflict at NIH), but also on at least one moderate-probability event over which I have partial control. That is to say, if I fall ill with a respiratory infection, or frankly much of anything else, the surgery will be postponed. Due to the scheduling demands, if it is postponed, it will probably be postponed by at least a couple of weeks.

The same was true when I had my left thoracotomy back in 2009, at the time my very first metastasis was removed from my left lung. But back then, I was dealing with a Portland-based surgical team, so if the date slipped, it was only inconvenient. We already have airline tickets tied up in this Maryland date. Also, and far more importantly, back then I had a single metastasis with a six-month doubling rate. A slip of a week or two was relevant only to my feelings about walking around with a tumor in my left lung. And my life expectancy was still measured in years, at worst case.

Now, I have about 30 metastases, with an eight-week doubling rate. My life expectancy at the moment is perhaps six months. Call it 24 weeks.

A delay of two weeks is a meaningful fraction of the rest of my life. 1/12, to be specific.

A delay of two weeks is an opportunity for my widespread tumors to grow another 25% or more in size. And possibly grow so far, so fast, that I will no longer be healthy enough to be operated on, as at some point the surgical risks exceed the surgical benefits, even in the context of a clinical trial.

I invite you to imagine my fears.

Insofar as oddsmaking goes, that’s a mug’s game for someone in my position. I have been a dead man walking for a year now.

On the one hand, I am very lucky and tough to have lived this long in the face of my disease. I’m pretty far out on the bell curve of survival time. Most people with my cancer are either cured or dead by the time they get to the point I’m at.

On the other hand, the trial protocol I am participating in has been tried on a total of several dozen patients. Most of those patients had a completely different class of cancer than I have. I am part of a new cohort with solid tumor cancers of the abdominal organs, which has numbered about a dozen so far. Of those, one had a cancer very similar to mine. That patient met with meaningful success, significant shrinkage of tumor activity over time. No one has yet been treated with metastatic colon cancer.

I am the first.

And the data set that I’m banking on demonstrates about a 1/12 track record with respect to my hoped-for outcomes.

Sense a pattern here?

Of course, these long odds are why it’s a clinical trial. If this was a proven treatment, it would be available clinically. That’s the whole point of clinical trials. At some point, the doctors have to see if the treatment works on real patients with real disease. At times I’m capable of being pretty rational and dispassionate about this. I’m even enthusiastic about participating in what may eventually prove to be life-saving research. If this protocol has value for colon cancer, it will help address one of the leading cancer killers in the United States.

But for me personally, emotionally? The cards I hold in this game keep drawing lower and lower with every round I play. The stakes grow higher and higher. I measure out my life in weeks. The cost of a simple head cold could be me washing out of this trial, or least getting so much sicker that the protocol has a lot more work to do in order to help me.

Other people’s sneezing has become a life-and-death issue for me.

As a result, I’ve cut back or canceled my social plans for the week. I will run only essential errands. I will stay home, stay warm, stay hydrated, use a lot of hand sanitizaer. I will be paranoid. Every day I’m playing for my life.

So, yeah, stress much?

[travel|cancer] Flying home now

Dad, Lisa Costello and I are off to the airport momentarily. Flying home to Portland. We’ll be there about a week before we come back to Maryland for the next steps at NIH.

In the mean time, due to the need for strict health hygiene in the run up to lung surgery, I am going to have to pick up some surgical masks on the way to the airport, and wear one on the plane. I purely hate that. This is also affecting some of my social plans for next week, as I need to be careful about environments and behaviors that would increase my risk of viral or bacterial transmission.

(No hot tub for me, in other words.)

Ah, science. Ah, cancer. At least I’m going home.

[cancer] In which my NCI adventures conclude, for now

Yesterday was my thoracic surgery consult, with bonus running about and a severely delayed lunch.

Dad, Lisa Costello and I got to the clinic early, but they went ahead and checked me in. A surgery nurse practitioner and a research nurse took some basic history, but the attending physician was not ready to see me yet. I was also advised by the nurse-manager from the immunotherapy group that I needed my pulmonary function assessment repeated due to some questionable results from Wednesday’s test, and that I had a test appointment right in the middle of my thoracic surgery consult. So we left the clinic without seeing the attending and had another pulmonary function assessment.

Apparently some of my numbers from Wednesday were just below a required threshold. The pulmonary tech ran me several times to see about getting me good numbers, then eventually sent me back to thoracic surgery without much comment, but my results in a sealed envelope.

When we got back, we waited about an hour and half to be seen. (This is very unusual in my admittedly brief experience of NIH.) At various points, doctors from both the thoracic surgery group and the immunotherapy group popped in briefly to tell us that they weren’t ready. We got no lunch break, because we didn’t when or how long we could leave.

At my home hospital, such a delay would almost certainly be a resource management issue or an emergency going on. At NIH, I figured it was more likely about the science. As we idled, I speculated that the reason we were idling was that the two teams, thoracic surgery and immunotherapy, were arguing about my eligibility.

I eventually went out and asked if we were still in queue. Shortly thereafter, the thoracic surgery team turned out in force. The attending physician explained that there had been a significant discussion between their team and my doctors from the immunotherapy team. My pulmonary function test (I’m not sure which bit of it) was a couple of percentage points below the cut-off for trial participation. This despite me self-evidently functioning normally in terms of everyday health and physical activity. The pulmonary function did not seem to be an issue at all with respect to the proposed lung surgery. The two teams eventually agreed on a waiver of the requirement.

The net outcome was that I am approved for the surgery on January 23rd, which will harvest tumor tissue for the cell growth process. The infusion process will start 2-3 weeks after the surgery date, depending on how well and quickly my harvested immune cells grow in the lab.

We discussed the surgery itself. There are potential targets in both my lungs. The thoracic surgery teams plans a laparoscopic approach. They are concerned about the left lung, due to my prior surgery there. Even though that is apparently the best candidate tumor, the surgeons felt there is a good chance of adhesions between the lung and the chest wall, as well as other scar tissue, complicating access. There are two smaller tumors in my right lung which are also fairly accessible, and they may prefer to go after those. That decision will be made sometime soon in consultation between the two teams.

If the laparoscopic approach is successful, I can expect a two-to-three day post-operative recovery period. If they have to go open incision, I can expect a four-to-five day post-operative recovery period. That latter is consistent with my prior experience of lung surgery. I will also have a chest drain. (I have to say that having my chest drain removed after my lung surgery back in 2009 was easily one of the most unpleasant somatic experiences of my life. And I’ve had a lot of unpleasant somatic experiences…)

I will be required to report a day early on January 22nd, for another CT scan as well as admission to the in-patient facility that evening. Pre-op prep will start around 8 am on the 23rd. I will be in surgery for two to three hours if laparoscopic, a few hours longer if open incision, before going to recovery.

In the mean time, I have been strictly enjoined not to come down with a respiratory infection or other illness. They will not operate if I am ill.

All of that means I will have to fly back to Maryland no later than the 21st, but I will ask to fly a day or two earlier in order to have a margin of error in the event of flight delays, weather problems, etc.

When we were done in the thoracic consult, they sent us down for an immediate appointment with the preoperative anesthesia group for an assessment. This was the thoracic team being kind, so we didn’t have to change our flights tomorrow and come back Monday. This also meant we still didn’t get any lunch. That appointment was more than a little strange as well, as the anesthesia nurse had no idea what I was doing there. The medical record-keeping hadn’t caught up yet, and I wasn’t in their surgery log.

The nurse took a history, seeming surprised that I didn’t know which lung they were planning to cut open. We talked about my drug reactions, my issues with medical adhesives, and the whole opiate/constipation thing. Eventually we escaped. We had a drive-through lunch at 3 pm, before our 5 pm dinner.

All objectives were accomplished, and we are going forward with the study, but there was a period of time there when I was afraid I was about to be washed out. At this point, I think everything is done except confirming my return travel date.

Wish me luck.

[cancer|photos] The warm, pointed magic of apheresis

Yesterday I had a 4-1/2 hour apheresis session.

photo 2a
The machine it’s own self.

The goal was to harvest white cells from my bloodstream, as part of the growth medium for the treatment I’ll be receiving in early February.

photo 2
The bag of reddish-brown stuff above the machine is an admixture of my plasma, platelets and white blood cells. When examined closely, a collection of dusty looking white goop at the bottom were the actual target cells.

Luckily, I did not require the femoral catheter. I generally only have one good vein, in the crook of my left elbow. That was available for the output line. The apheresis nurses were able to find a second vein on the outside of my right forearm for the return line. The session processed 15 liters of my blood, or about 250% of my blood volume. I remained under a warming blanket set at 43 degrees C. That’s 109 degrees F.

I was very comfortable.

A very weird experience, with mild needle pain at the outside, but not otherwise particularly difficult to tolerate. Apparently I’ll have another apheresis session post-treatment for evaluation of my blood cells.

Photos © 2014, Joseph E. Lake, Jr. and J. Lake.

Creative Commons License

This work by Joseph E. Lake, Jr. and J. Lake is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

[cancer|writing] Another painful thing

As I have frequently commented, the narrative of cancer is a narrative of loss. I haven’t written a word of new fiction since last June. At this point, I don’t expect to ever write again in my life, unless something very good arises out of these NIH studies. So be it. My career continues — Tor is releasing Last Plane to Heaven next September, stories from last year are getting favorable mentions — but it’s definitely deep in the wind-down phase.

What I see right now on blogs and social media are my auctorial friends and colleagues posting year-end reviews of work published in 2013, summaries of work contracted and planned in 2014, travel and convention schedules, and the like. All the usual change-of-the-year stuff we talk about.

I’m not really part of that world any more. I have no more new work contracted, since I can’t produce it. I have no writing goals. I have no convention plans for 2014. Being sick is a full time job, and besides which I don’t have the energy or the money. I expect to pass away next summer anyway, unless that very good something arises. I’m watching the party move on without me.

It’s natural, it’s logical, and it has nothing to do with me except in my own mind. But it’s quite painful at times.

Like I miss so many other things, I miss that part of my life.

Fuck cancer.

[cancer] Field notes from Cancerland, further adventures in Maryland

NIH tech support

Yesterday morning, I got a call from NIH tech support. It had been on my to-do list to call them, as I was having trouble accessing their patient portal view the Web. They had noted the failed access attempts in the log, and the tech support person had tracked down the problem and solved it prior to calling to inform me of all this. That is literally the first time in my life I’ve gotten a proactive call from a tech support team about a issue I was having personally. (I’ve occasionally been on the receiving end of calls or notifications of system-wide events, etc., as we probably all have.) Tell me again how the government can’t do anything right?


I had another cold flash Tuesday evening. We intercepted it at the start and headed off the worse, but it still was no fun. Likewise, the last few days I’ve been struggling again with fatigue bordering on the pathological. And the area around my liver has been aching a lot.

Likely as not, this is all just physiological manifestations of stress. Things are going quite well here at NIH, but it’s an enormous amount of information and a lot of tests and procedures all happening at once. Dad says I made it through last week on adrenaline. I guess this is the crash week. However, my oncological hypochondria is in rare form. And in truth, we are getting into the window where I would expect to begin seeing overt physical symptoms of my terminal decline. My palliative care doctor recently suggested that the cold flashes could be from “the evil humors of the cancer”, for example.

So, yeah, the world is running down.


Yesterday at NIH I had an echocardiogram and a pulmonary assessment. I can report that I in fact have both a heart and a brain. Informally, the word was nothing unusual seemed to be present on either test. I will know more formally on Friday, I think, when I see the thoracic surgery group.

Today I have the leukopheresis. This starts at 7:30 am with a surgeon implanting a dual-lumen Hickman catheter in my femoral artery. It pretty much goes downhill from there, I suspect. They’ll be harvesting leukocytes to facilitate the treatment regimen which should commence in early February.

I must confess to a high degree of anxiety regarding this procedure. It’s one I’ve never had before, and I’m not really looking forward to having the catheter implanted. This uneasiness is just my backbrain ticking over, I know, as I’ve experienced far more painful and dangerous things in the clutches of the medical system, but I’m still having a tough morning.

The study I am enrolling in

I still don’t know what the limits are on what I can discuss, but this is some pretty cool science and cutting edge technology. I’m excited to be a part of it. I’ve asked for guidance on how much I can talk about the science, because a lot of you reading will likely be fascinated to hear about it. I will be formally consented tomorrow morning, which puts me in a formal patient relationship with NIH. This has various implications around logistics and timing. More when I can.

The cost of doing this

NIH will pay for my air travel to and from Portland for the different portions of the study. I expect to fly home 1/11, and back around 1/20 for thoracic surgery to have a wedge resection performed on my left lung. Then home around 1/28, and back around 2/5, for a much longer stay with a basket of treatments. As almost all my time here will be in-patient, I don’t have direct housing expense for me. But Lisa Costello and Dad are coming and going with me. The precise air travel dates are unpredictable, and are set somewhere between two days and a week in advance for each arrival and departure, separately, depending on various clinical factors. If you know anything about airfares, you know how utterly ghastly this is from a cost perspective. On top of that, their housing for most of January and February (I’ll be in the hospital 4-5 weeks overall), and our incremental expenses. It’s a mess.

Once I have a better handle on how I can talk about the science, I will probably work with a few folks to put together a science-driven fundraiser. As my recent posts on the costs of cancer hopefully made clear, if you’re in my position, you bleed money. I’ve about tapped out the funds from last January’s Sequence a Science Fiction Writer fundraiser, with my profound thanks to everyone involved. More to come on this as well.

[cancer|personal] How expensive is it to sicken and die?

I mentioned yesterday on social media that in 2013, my household’s out-of-pocket medical expenses exceeded $30,000. Several people asked me how this broke down.

Note that my health insurance covers both [info]the_child and Mother of the Child as well as myself. About $10,000 of that $30,000 was spent on their needs, which I won’t specify further as I don’t discuss their healthcare on my blog for reasons of privacy. Suffice to say that in their own right, they had a very expensive year.

My direct expenses were as follows, in round numbers.

COBRA (Q3-2013 plus January 2014) $6,200

Medical Copays $6,000

Ancillary Supplies $3,500

Pharmacy Copays $1600

Optical $800

Home Care Supplies $700

Massage and Bodywork $500

Dental $350

Misc $50

COBRA is a household expense incurred due to me going on long term disability and losing my employer-sponsored coverage, for which I was paying about $550 per month pre-tax as my employee contribution. I traded that for a $1,600 per month post-tax expense while on a reduced, limited income from disability.

Dental isn’t really a cancer expense.

Optical is money I would not have spent if I hadn’t been sick, as I had to get a new pair of glasses that rested lighter on my face due to the severe skin conditions caused by the Vectibix I was being given through the fall of 2012 and spring of 2013.

Pretty much everything else on there is a direct cancer expense. FYI, “Ancillary Supplies” is nonmedical purchases like the powered recliner I needed to elevate my feet to deal with the hand-foot syndrome caused by Regorafenib — things I would never have bought for any reason other than being ill.

I’m not counting two other major categories of expense. There’s additional ancillary supplies that I might eventually have bought anyway even if I were not sick, such as the large screen LED television because I have so much trouble reading that I have to get my entertainment that way now, and my tiny, elderly television wasn’t working well for me. Also the Windows8 tablet I bought so my power-of-attorney holders, and later on my executor and trustee, can manage my household accounts. Those I have enumerated, but don’t count as medical deductions for tax purposes so they’re not in the above table. They come to roughly another $6,000.

Also, there’s indirect expenses such as increased heating bills due to my reduced cold tolerance, increased food bills due to my intermittent dietary eccentricities, and so forth. That’s a bit harder to account for, but at an educated guess, another $6,000.

I’m also not counting the substantial legal, accounting and financial planning fees I’ve paid for disability counsel and estate planning. Nor am I counting the substantial expenses associated with my funeral arrangements and memorial arrangements. I paid out well over $12,000 in 2013 in this category, and will spend rather more than that in 2014, even assuming I die this year as expected.

Of course now, with the NIH activity, we’re looking at expenses ranging from $4,000 to $7,000 per month for travel and lodging for me and my caregivers. Not all of that comes out of my pocket, but even with a nominal 1/3 split between me, Dad and Lisa Costello, that’s $1,300 to $2,300 per month I’m spending, on top of most of the above expenses.

Historically, since my first metastasis in 2009, I’ve averaged about $10-12,000 per year in expenses. Last year got much more expensive because my illness got much worse. This year I expect the same. So a breakdown of all the above, filtering out expenses for others in my household.

2008 direct medical expense $3,000

2009 direct medical expense $10,000

2010 direct medical expense $10,000

2010 indirect expense $6,000

2011 direct medical expense $10,000

2011 indirect expense $6,000

2012 direct medical expense $12,000

2012 indirect expense $6,000

2013 direct medical expense $19,700

2013 additional ancillary supplies $6,000

2013 indirect expense $6,000

2013 professional fees and funeral expense $12,000

2014 direct medical expense (est.) $20,000

2014 NIH study out of pocket expense (est.) $5,600

2014 additional ancillary supplies (est.) $3,000

2014 indirect expense (est.) $6,000

2014 professional fees and funeral expense (est.) $18,000

In the end, by the time I pass away, I will have spent out of pocket about $159,300 I would not normally have spent in this decade of my life. Add this to the $1,300,000 or so in billed medical services my health insurance carrier has covered, and whatever value one cares to assign to the services I expect to receive at NIH.

So, yeah, cancer is expensive. I suppose any serious illness must be, but this is something of an accounting for what it has taken to buy me the six years of life I’ve managed to eke out since first being diagnosed in April of 2008. Without the immense social privilege I enjoy in being white, male, highly educated and well-employed all my working life, there would have been a lot less money spent and a lot less time eked out by me.

I’m still here, but I’m a damned spendy dude.