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[cancer|travel] The band is hitting the road

I’m not going to NIH for the next step in my clinical trial until Tuesday, but Lisa Costello and Dad are leaving this morning. We had to make a best-guess when we booked their travel, because our alternative was a very expensive last minute ticket purchase once we knew my NIH travel order date.

So they are off shortly. Mom and I are going to the airport with them. Then I’ll have an unusually quiet couple of days home alone before being off myself first thing Tuesday.

This such a different process than any of my prior treatment cycles. I am in such a different place. And it all just gets harder.

[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 Audible.com 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.

[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] 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?

Symptoms

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.

Procedures

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.

[cancer] Field notes from Cancerland, new week edition

Working over the weekend

I received emails from the NIH doctors at several times over the weekend, including 11 pm Friday evening and 9 pm Sunday evening, as well as a few others along the way. All of which I responded to, in as much detail as possible. This team is very focused on me right now. That’s both gratifying and slightly unnerving. I’m not complaining, not in the slightest. Just pleased at the level of focus.

This week’s activities

This week’s activities are as yet almost entirely unknown. My case is on the agenda for a midday team meeting of the group I want to work with. I’ll get the official go-ahead this afternoon, presumably. There are still several decision points ahead even if everything is green-lighted. Once the go-ahead happens, I’ll formally enroll in the trial, and they’ll schedule a variety of follow-ups and pre-tests and whatnot. If the current proposes plan holds, I’ll be flying home Saturday the 11th. Subject to change, of course. Everything is subject to change. Like I said before, it’s a bit akin to dancing on ice floes.

Mental and emotional focus

Being so very busy has kept me mentally and emotionally focused. Also, being two months off the Regorafenib helps. But underneath it all, not very far underneath, is a great deal of fear and panic and depression. It’s good to be so very distracted, but I know that further down the tunnel, there is deeper darkness yet to come.

Logistics

I want to thank everyone for their various comments on logistics. You’ve been very helpful, both with direct suggestions and for clarifying our thoughts. A few notes to make.

One, the car sharing availability and terms around here really don’t work for our needs. It’s a terrific idea that just doesn’t match up well to what we’re doing here.

Two, given what I’m going to be doing, using the bus service or the Metro rail is going to be very challenging. I’m a terminal cancer patient with impaired mobility and very poor cold tolerance. Standing for long periods of time is difficult. Any treatments I undergo at NIH are going to make me a lot more sick, more weak and more vulnerable to infection and other problems. That’s not a good mix for public transit, especially in the winter.

Three, our housing needs are somewhat specific. Lisa Costello needs to be able to work full time from her accommodations. She, Dad and I all need a certain amount of space and level amenities. So couch surfing, RVs, and most b-and-b solutions don’t work well for us there either.

Costs

Per above, housing is our greatest out-of-pocket cost. While NIH does provide some free housing for patient caregivers during in-patient stays, space is limited and offered on a first-come, first-serve basis. The inherent instability of my medical schedule means we won’t have much lead time when we need to book space. So we’re very unlikely to be able to use NIH’s housing. That drives us toward any of several solutions, all of which cost close to $200 per day or more. Yes, this is going to be expensive. At dinner last night we were discussing the possibility of additional fund raising. Once I know what I’m actually doing, and what I can disclose about it (this is some pretty cutting edge science, I’ll tell you that), I’ll bring this topic up. For now, suffice to say there’s a lot going on.

[food|friends] Last night’s open dinner

Last night, Lisa Costello and I went to our open dinner. Despite the very crummy weather, we had a nice turnout: Joe Jordan, John Sapienza, Evelyn Kriete and GD Falksen.

IMG_2752

A good time was had by all, amid good food and fun conversation. I’m really sorry the weather kept some other folks away. Once I understand my schedule better, I will try to offer another opportunity.

Photo © 2014, Joseph E. Lake, Jr.

Creative Commons License

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

[personal] Dining with the Slacktivist

Dad, Lisa Costello and I met Slacktivist Fred Clark for lunch yesterday. Fred was kind enough to drive down from his home in Pennsylvania to dine here in Rockville, Maryland, near our hotel.

It was a fascinating lunch. Fred is a gentleman, as well as a smart and entertaining human being. I already knew this from reading his blog for years now, but it was fun to confirm that in person. We talked about families, life and cancer for a while, then veered off into theology, sociology and the Christian experience. Fred’s perspective and mine are rather different in some important ways, but quite well-aligned in other ways just as important. Plus we both went to Christian schools as kids, albeit under very different circumstances.

I was highly entertained, learned more than a few things and had a very good time. I am pretty sure Dad and Lisa did, too, and I hope Fred did as well.

The lunch was one small bonus for this trip.

[cancer] Field notes from Cancerland: New Year’s Day edition

Dreams

Last night I managed to have an anxiety dream which combined pretty much every oneiromantic cliche that ever existed into one simmering subconscious grab bag. Lisa Costello and I were staying in a college dorm, but I was splitting my time between attending classes and visiting an infusion center for treatment. Where I kept flirting with the nurses. Lisa tried to get me to go to a chemistry class with her, which it turned out I’d enrolled in but forgotten to attend. Instead I went over to the infusion center parking garage, where I could not find my car. Suddenly, I was surrounded by screaming kids embarking on a field trip, being rather badly led by the head financial analyst from my Day Jobbe. There was more, but basically, this dream combined school anxiety, job anxiety, relationship anxiety, financial anxiety, cancer anxiety, and “Dude, where’s my car?” anxiety. Oh my poor brain.

NIH

These past two days at NIH have been action-packed, to say the least. A fascinating experience to even be there. One big difference is that it’s a research institution, not a treating hospital. This means even really basic stuff like hallway signage and the behavioral priorities of the support staff is different from anything in my experience. With one minor exception, the process has been excellent, far exceeding both my expectations and my hopes. We still have no real idea where we’re going to land in terms of enrolling in a study (or possibly not), but we’re learning a great deal about me, about medical options, and about the way things are done at the cutting edge of oncology. As I mentioned yesterday, I will make more detailed reports later, once I am clear on confidentiality issues. I will say that a “Newcomer’s Guide to NIH” would be a hella useful thing to write.

Social Life

Other than seeing family, we’re not being social here yet, again with one exception. Too much to do at NIH, and my head tends to be brimming with thoughts and data at the end of each day. However, today we are meeting Slacktivist Fred Clark for lunch, as he is kind enough to drive down here to see us. I’ve admired Fred’s blogging for a long time, and suspect we are kindred spirits, so I am really looking forward to seeing him in person.

Schedule in Maryland

We will make a decision tomorrow afternoon or Friday morning about whether we’re going home over the weekend or staying into next week. This has to do with which path we follow for the clinical trials. Some paths require me to stay on for a while, some paths have a day or two more of testing (likely Monday and Tuesday), some paths have me go home and come back later. Once I know how that’s working out, I will make an effort to make myself available for social time with area friends and fans.

Happy New Year

This is quite likely the last New Year’s Day of my life. I intend to enjoy it, and hope you can do the same.

[cancer] Off to see the wizards

This morning, Dad, Lisa Costello and I are off to our first day of screening appointments at NIH. We shall see what we shall see.

Once I know my way forward, I’ll talk more about the options and choices I’m dealing with now. For the moment, I must maintain confidentiality.

And annoyingly, I continue uncharacteristically nervy about the various procedures involved.