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[cancer] The NIH Fundraiser – stretch goals?

Yesterday, the Science Fiction Author on Trial (NIH trial, that is!) fundraiser made goal.

Thank you very much. This helps meet the costs for Dad and Lisa Costello to be here in Maryland, as well some of my incidentals.

One of our prize sponsors suggested we set some stretch goal prizes. I’m going to let them worry about that with the organizer, Shlom Ster. It would be nice to cover the $2,000 or so in extra costs from my last minute travel fire drill. Any money beyond that will go into my healthcare fund for future needs here at NIH or at home.

But really, to do it yesterday, while I was out for the count for surgery and recovery… You guys are awesome, and I love you. Thank you so much.

[cancer] Surviving the trip, surviving the hospital

Tuesday morning getting to the airport was tough. 205 was all but closed down by multiple accidents. Mom drove me on surface streets. As I was checking in at the airport for my nonstop flight to DCA, the flight was cancelled. Literally while I was at the counter. So many flights were being cancelled due to the East Coast weather that the best rebook I could get was the same flight the next day, Wednesday. This would have put me at the NIH hospital at 7 or 8 pm the evening before my surgery first thing the next day. Given that I had a schedule of pre-operative testing, that wasn’t going to be very practical. I would lose my surgery slot and have to reschedule everything, probably weeks down the road.

Mom drove me home again, while I texted and emailed with various folks. Donnie Reynolds was offering to drive me to NIH in Bethesda if I could get as far to the east as I could, but coming from the west, Memphis was the closest airport that wasn’t being shut down. Then my friend Gray Rinehart Facebook messaged me that if I could fly into Raleigh-Durham, he could drive me to DC Wednesday morning.

Even that was cutting it too close for comfort, but Donnie was willing to fly to Raleigh-Durham and drive me overnight.

Meanwhile, I couldn’t get anyone at NIH on the phone due to so many offices being shut down with the weather. After consulting with Lisa Costello and Dad, I made a command decision to buy the stupidly expensive and completely unbudgeted one way ticket to Raleigh-Durham, arriving at 11:40 pm Tuesday night. (The same night I was supposed to check in to the hospital around 7 or 8 pm.)

I flew. Donnie caught up with me in Dallas, where we ate Monte Cristo sandwiches at Bennigan’s, then we flew on to Raleigh-Durham. The woman on our row was struggling with a panic attack after boarding, to the point where the flight attendant was obviously considering putting her off the plane rather than risk an in-flight emergency. When we got to Raleigh-Durham, we were stuck on the plane an extra ten minutes because the jetbridge had frozen and could not be moved up to deboard the aircraft.

Donnie and I got my luggage with the help of the world’s worst wheelchair attendant, then picked up the car he’d rented. He drove us from there to Bethesda, which took about five hours even in the teeth of the dying storm. I slept perhaps three hours of the trip. We arrived at 5:30 am, Donnie dropped me off at the hotel, then turned around and headed back to Raleigh-Durham.

I woke up Lisa and Dad, we got sorted out, and headed to NIH around 6:30 am.

The morning was confusing. My hospital admittal orders were dated Tuesday 1/21, and it was Wednesday 1/22. The admitting department couldn’t do anything until someone from the research group changed the paperwork. So I went to my CT scan appointment, as well as getting some bloodwork done in phlebotomy. We went back to wait some more, and were eventually admitted.

After going upstairs to my ward, in a shared room two-bed room, I was told I also had a chest x-ray and an EKG required. Meanwhile, a parade of people came by to see me.

The two immunotherapy doctors handling my case were very glad I’d busted my hump to be here today, as it kept from having to cancel me and reschedule down the road. The social worker called to tell me a room had opened up in the on-site family lodge. Lisa and Dad went off to deal with that. One of the immunotherapy doctors and the Principal Investigator came by to talk about my blog and discuss how I could talk about the study, and whether I would like to be part of an article about the study. The two immunotherapy doctors came back by to talk about the surgery the next day (today, now), which has definitively been planned for my right lung. We discussed the pros and cons of the approaches, and why they’d settled on this one. Essentially, a sufficient amount of tissue to be harvested without the potential entanglements of scarring and adhesions which my left lung would likely present. They will attempt a VATS (laparascopic) approach first, with open thoracotomy as the fallback. Someone from the publicity department came by to have me sign a model release. The Principal Investigator came back with a publicity team to do a photo shoot of he and I for that NIH article. The immunotherapy doctors came back to discuss post-operative timing and TIL growth. The head of thoracic surgery came by with some of his team to review tomorrow’s procedure and have me sign the informed consent forms. One of the thoracic surgery research nurses came back to have me sign some more consent forms about blood transfusions and so forth.

All this while I’m running on three hours of sleep after a travel day that was over twenty hours long.

On the plus side, we had a very nice dinner at Pizzeria de Marco. (I got a hall pass from the hospital to go out.) On the far more plus side, the procedures are going forward as originally scheduled, which makes it all worthwhile.

But whew.

[travel|cancer] Now in Bethesda, Maryland, and the unlikely way I got here

As of half an hour ago, I arrived at the hotel where Dad and Lisa Costello are staying. Though I was supposed to check into the NIH hospital last night, I will be there around 7:00 am this morning, about 12 hours late. My original flight to DC was cancelled yesterday morning due to weather, and a rather elaborate Rube Goldberg plan emerged in its place.

I’ll let my Tweetstream tell the story…

That doesn’t even cover all the bases, like the poor passenger having the panic attack and my long conversation about Omaha.

All in all, I got about three hours of sleep last night, non-contiguously. Also, I added close to $2,000 to my expenses in additional unbudgeted costs for this whole farrago. If you feel like it, please promote or donate to the Science Fiction Author on Trial (NIH trial, that is!) fundraiser for my NIH collateral expenses.

But I am here. And shortly I will be at the hospital, bushy-eyed and bright-tailed and ready to assist in advancing the cause of healthcare research.

[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] Progress is being made at NIH

We are advancing, albeit slowly, here at NIH. I have chosen a study out of the five we were offered across three teams of investigators. This in turn has led to more choices, some of which are dependent on lab work which is even now being done.

Today I have an EKG (again) and a pulmonary workup. We’ll also be chasing several administrative issues at NIH while we’re there.

Thursday I have a leukapheresis session scheduled. This include an outpatient procedure to insert a catheter in my femoral artery, as the veins in my arms are not suitable for the large-gauge needles normally used. I believe that will last much of the day due to the need to filter a very high volume of blood.

Friday I have a consultation with the thoracic surgery group. There may also be a consultation with the infectious disease group to formally clear up a rather odd lingering issue from my childhood overseas.

I expect to fly back to Portland on Saturday, and return to Maryland around January 21st for thoracic surgery on January 23rd. The goal of the surgery is a non-therapeutic resection to harvest sufficient tumor tissue for culturing of naturally-occurring healthy immune cells typically found interpenetrated with solid tumors. I will return again in early February for a rather complex series of treatments involving a roughly three-week inpatient stay at the hospital on the NIH campus.

Some of the above may change, depending on the lab work results I mentioned, but that’s the current plan. I’ve been cleared to discuss the treatment in a general way on the blog and in social media, but am awaiting another conversation with the physicians before getting into detail about the science and the treatment processes. I want to make sure that I am respecting any confidentiality issues around the research in progress.

I will say that NIH sheds a whole new light on the old conservative scare phrase, “I’m from the government and I’m here to help.” This is socialized medicine in its most literal American incarnation, and it’s damned good medicine with a very positive patient experience so far. Your tax dollars and mine are hard work, doing things that may eventually help cure millions. It’s an honor to be a guinea pig here.

Onward we go.

[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.