His last request

Written by Iatros Polygenos

I know that a lot of people know by now, but I needed to write it out again. Jeff Medkeff died August 3rd, 11:05am at Queen Elizabeth the Queen Mother Hospital in Margate, England.

One of the last things that was said to me was a request to post a blog. I didn’t realize how hard it was going to be to sit down and write about the things that have happened. I just realized today that it has been one week since Jeff died, and that it was time that his request should be upheld.

Jeff never let the diagnosis get him down. He kept pushing forward in trying to find someone who could treat the cancer, while all the time knowing the chances were slim. When it became evident that there was no major treatment available, he decided to start the oral chemotherapy, Nexavar. Unfortunately, he came back from MD Anderson with a nasty upper respiratory infection and couldn’t start the chemo until that was cleared up.

Early on after diagnosis, he said that he wanted to go to England to see some of my family. He still wanted to do this and so we planned to go after returning from MD Anderson. The doctors all told him that he was fit to fly. He seemed to be in pretty good spirits about everything. So, off we went to England. Our flight went over the pole and landed in Frankfurt and was a fairly smooth flight. There was a day layover in Germany and the flight left from the Frankfurt Hahn airport. Traveling has been pretty uncomfortable for Jeff, so the bus ride to Frankfurt Hahn was not something that he enjoyed.

My brother had requested a list of things that we wanted to see while over here. One of which was Westminster Abbey, to see Charles Darwin’s grave. There was a pleasant surprise when we arrived however. Charles Darwin’s House – the Down House – is located on the south side of London. Jeff had thought that is was north of London. Since we were staying in Deal, that made it pretty easy to visit. I think that the visit to this house as well as to the Royal Observatory in Greenwich were the highlights of the trip for Jeff. At the Down House, Jeff picked up a book to write his thoughts about his trip.

Jeff with part of Herschel's large scope

Some of his thoughts on the Royal Observatory are as follows:

R.O was largely as expected, being very much like its pictures. The camera obscura, which was trained on the Naval College, was impressive…Piece of Wm. Herschel’s large scope was sitting in courtyard; had my picture taken with it. Very nice to see the transit instruments, which essentially founded my field of astronomy (astrometry).

Jeff at Down House

The same day we went to the Down House.

Down House was a great pilgrimage. It is a large, but not huge, country house on the outskirts of London. Presumably it is Regency in origin? It looked v. comfortable and I envy Darwin his opportunity to spend years there reducing the Beagle data. I walked the Sandwalk and visited the greenhouse as well. Was impressed that Darwin was so well-instrumented for the Beagle voyage – including clinometer, barometer, magnifiers, etc. Most accounts of Darwin in the Beagle years that I’ve seen depict him as more of a specimen collector, rather than as someone also doing quantitative work.

Darwin is huge, personally and scientifically. It is remarkeable to think that his theory predicted genetic mechanisms of inheritance. But the cultural impact was also large. On a personal level, Darwin makes it possible to view my disease not as the result of the actions of some despicable god, but rather as a predictable and impersonal consequence of the way my species came into being. The universe, along with its “creator” or universal personality, or whatever, is not out to get me. The universe isn’t capable of being out to get me or anyone else – it hasn’t got the necessary attributes to do so. This is an impersonal problem. That’s very comforting, far more so than thinking that there is some shy ghost fucking with people in senseless, cruel ways.

We visited these two places on the 25th of July. We were taken all over the place looking at Roman ruins, Roman painted houses, Canterbury Cathedral (which he had some very scathing things to say about, especially since it was crawling with Bishops at the Lambeth conference)and also the British museum, where he was thrilled to get up close to the Rosetta stone.

He was doing very well during this time, walking and feeling quite hungry(he got an inexplicable craving for McDonald’s once). He had also started taking the Nexavar and had no side effects that he could discern. The only problem was trying to time things right. He was eating small amounts all during the day. The Nexavar was supposed to be taken 2 hours after eating and one hour before which required some timing and usually happened after breakfast but before lunch. The chemotherapy was started very slowly and was going to be worked up to the full dose of 2 tablets twice daily. It was going to start at one tablet daily for several days, then one twice daily and so on. He only got to take 2 evening doses.

On July 30, we toured Walmer castle(if anyone goes there – don’t listen to the tape. It was awful) and then had some drinks on the beach at the Zetland arms. Everyone was in a very good, mellow mood. In fact, while on the beach, my brother found a fossil that Jeff was looking forward to identifying when we returned from England. It wasn’t until dinner time that things started to get bad. Jeff was only able to take one bite of dinner and then after we finished, started to get nauseous. I thought that it might be side effects from the chemotherapy. As always, when offered some antinausea medication, he looked it up to make sure it was compatible with the loads of medications that he was taking. Unfortunately it did react with the medication to lower the calcium, so he had to settle for plain soda water. This seemed to help and he felt better quickly, but was extremely tired. He was also uncomfortable and was hoping that some hydromorphone and laying down would take care of the problem. At around midnight, he woke me up because the nausea had returned and he needed help to get to the bathroom. That is when the vomiting of the blood started. Earlier in the evening, he told me that he was concerned that if he did any vomiting, that could start the enlarged verices in his esophagus bleeding. What we didn’t know at the time was that the verices had already started bleeding and that was what came up. It is hard to say when or why they started to bleed, but I would expect that they had started earlier that evening. We are unsure whether the tumor had gotten bigger, causing more pressure on the portal vein.

We went to the hospital by taxi. As it was explained later that sometimes getting a taxi was quicker than getting an ambulance. It was interesting once we got to the hospital, since they weren’t that busy. They nurse handed Jeff a hospital gown and had him change and then just left him sitting on the gurney for a short time. I went off to find a container and he vomited blood again. At that point several doctors came running and decided that he was now someone to pay attention to.

I do admire Jeff for the way he handled all the discomfort he was put through initially. They put 2 catheters into his arms without a problem, but then another doctor came up to take over and advised him that they needed 2 other bigger catheters going as well. They had to try several times before being able to get those in as his blood pressure had dropped to 72/24. Yet he was still totally coherent. He even asked if he could get up and use the restroom. The doctors looked shocked and told him that they were afraid he would faint if he tried to get up.

During all this time, they were assembling a team to scope his esophagus and stomach and try to band the bleeding vessels. They were able to get him down for scoping by 9 the next morning. The team was trying to decided if they should just lightly sedate Jeff or if full anesthesia should be used, when Jeff vomited on the surgeon. He decided full anesthesia was needed. (We had planned on going to the National Gallery in London this day). I don’t remember exactly when they finished with him, but it couldn’t have been before noon. They said that they had been unable to put bands on them as they first had hoped, but they injected all the ones they could with a substance that would seal them off. The doctors told me that the verices were severely engorged, which was different from the scoping 3 weeks previously. Even with all the injections, they were unable to get all the bleeding stopped and the vessels were still oozing. They had placed a sanstocken tube into his stomach and inflated balloons on the tube to put pressure on the stomach and esophagus. Then this tube exits the mouth and they hang a weight to help with the pressure. While this tube is in, he was anesthetized and had a ventilator.

The staff would leave the weight on for 3 hours and then take it off for 2. This was kept up for the next 24 hours. When I got back from breakfast on the 1st, he had just been woken up and was soon extubated(the breathing tube was removed). The staff were quite surprised that Jeff was so calm and didn’t try to rip out the tubes. I was told that a good proportion of people coming out of anesthesia are frantic and try to remove all stuff from their bodies. I could tell that he was uncomfortable with the sanstocken tube, but he still had some drugs on board, making it bearable. They couldn’t take that tube out until late afternoon. He was certainly happy when they were able to remove that, but he said it was extremely uncomfortable. In fact, later he would start to doze and then remember them removing that and it would startle him awake. Also, his swallowing was screwed up for the night. He said it felt like he swallowed up. One doctor was talking about placing a feeding tube, but he said that he couldn’t swallow it, so they didn’t follow through with the feeding tube. They were able to get the nausea under control and finally the pain was also well managed. They always listened to us when told that he does not respond to morphine. They never tried to give him morphine and went straight to the fentanyl, which he responds to very well.

After the sanstocken tube had been removed and several hours had passed, it was evident that he was continuing to pass some blood. At least he wasn’t vomiting it up anymore. The doctor which had performed the scoping, came back and wanted to re-scope Jeff and possibly put the sanstocken tube back in place for a little time longer. We had discussed the issues and then asked some questions. One of which was the likelihood of Jeff walking out of the hospital after the procedure. The doctor said that the chances were less than 50%. At that point, it was decided to just continue with palliative care and not do any heroic measures. He wanted to live out the rest of his time in comfort and dignity and not with tubes everywhere.

August 2nd was a very good day for him. He was talking softly and joking around with all of us. The pain was under control and he was drinking water and really enjoying a strawberry protein shake. Even some of the nurses were thinking that during the week he would be moved to one of the wards. One of the medications that they were giving him was supposed to tighten up the vessels and it appeared to be helping. During that night, he was given a sedative to sleep and was very happy when I left to get some sleep myself.

The next morning, as I got ready to return, the nurse called and said that he had started to breathe differently and suggested I come in. When we got there, he had passed a large amount of blood and was stretched out, breathing deeply and was not responsive. I have been present for lots of deaths ( I know, animals, but they die in a similar fashion) and this was one of the smoothest deaths I have seen. He just gradually slowed down, until his breathing just stopped. He was in such good shape with the rest of his body that his heart continued for another 5 minutes. And then he was gone

So, we have lost a wonderful person. Someone who fought for better education and loved to teach kids himself. I know that I will miss him. Somehow, everything seems a little smaller.

Back in Anchorage

Just wanted to let you know that I made it back to Anchorage without incident on a long, direct flight from Houston.

I had a bit of an odd experience last night. I woke up at about 2:00 with a very sore patch in my throat. I threw a Sucrets at it, drank some water, and went back to sleep. By morning, it was gone. But later in the day I got a bigger surprise – on the plane I started coughing, and the cough was productive and fairly severe.

Since I haven’t seen anyone other than people associated with MD Anderson in over a week, I’m thinking I might just have caught a nosocomial respiratory infection. And I did it while already on Ciprofloxacin, which is a little distressing (though I suppose it could be viral). Or maybe it is just a little edema for the hell of it. Whatever the case, I’m stuck between an enlarged spleen and liver putting pressure on my diaphragm, and lungs that have decided to turn pathological on me the instant I leave a medical care environment. The combination is not pleasant.

At the moment I’m just trying to keep breathing. If things get really bad I’ll go to the ER, don’t worry.

Done at MD Anderson

MD Anderson did a bone scan on me today (results were supposed to be available around 3:00 PM today; it is now 6:30 and nobody’s called me with any bad news, so I’ll follow up on that on Monday. I’ll post the story of this adventurous test at that time – I don’t know why, but health care mistakes and screw-ups follow me around like puppy dogs….

I’m flying back to Anchorage on Saturday afternoon.

As I speculated in my previous post, my case is among the “worst case” scenarios,” and MD Anderson accordingly offered two treatments – the one in phase II trial, and the other – Nexavar – a drug that received fast-track FDA approval last November. I’ve elected to go with the Nexavar for several reasons.

The first is that the statistics of the phase II trial do not convince me – they have better outcomes than Nexavar, but the error bars are too big for my tastes. Besides that, the paper describing the phase II trial is in prepress – in other words, I can’t read all of it.

The second is that the side effects of Nexavar do not look as bad as the side effects of the two chemotherapy drugs they are using in the phase II trial. I’m more concerned about my remaining quality of life than I am with its quantity, so this is a concern for me.

The third is that I’d have to come to Houston every two weeks if I were part of the trial. This could get a little expensive, and might interfere with some travel plans that I have.

The fourth is that the trial is expected to be be open for some time yet. In the event that I do well on Nexavar, I have the option of joining the trial at a later date.

So I went in and signed off on Nexavar today, and went down to the hospital pharmacy to pick it up, and now my insurance company’s dragging their feet about letting me have it.

This is, incidentally, basically the same as the option that was open to me at the end of the hellish University of Washington debacle, the main differences here being that I have a much better clinical view of my condition now, and MD Anderson educated me well enough that I feel I made a competent, informed decision. They’ve also given us a lot more information about a variety of topics of concern that we haven’t easily found in Alaska, so it was well worth coming.

Next appointment down here is (rather ominously?) September 9 through 11.

MD Anderson: The First 48 Hours

This is just a brief post to let you know that I’m at MD Anderson, and I’ve had two days of tests and treatment by them. In brief, here’s the scoop:

I met with Dr. Kaseb and his Physician’s Assistant on Monday. Both are very impressive, highly professional individuals. He took a great deal of time discussing my condition and educating me about the implications of various test results, treatment alternatives, and so forth. The bottom line is, in the worst-case scenario – and I’m pretty confident that I’m a part of that scenario – there are two treatments that MD Anderson can offer me. One of them is currently in phase-3 clinical trial, with very good outcomes, but on a distressingly small n=44 on the phase-2 trial. The best-case scenario is not available to me – I am not eligible for liver transplant at this time, and would have to make a remarkable and statistically very unlikely recovery to even get to that point. (It has been suggested that I could get a transplant in India, though – along with suggestions that that is in itself awful risky in multiple ways.) Intermediate-case scenarios like TACE and RFA are uncertain – I may or may not be eligible, and that will be determined by CT scan results. I’m glad MD Anderson is, in essence, throwing out past images and evaluations (particularly U of Washington’s) and are going to find out for themselves.

After that I had a blood draw for routine tests.

About 30 minutes later, I was sitting in P. F. Chang’s trying to have some dinner, and I get a phone call from one of the clinic’s doctors. He says, approximately:

Your blood test results have come back and your blood calcium is very high. You need to come to the emergency room right now and have this treated. And don’t drive yourself – get someone else to do it.

This was a shock, in part because I’ve never been summoned to an emergency room, and because I was having absolutely no symptoms of hypercalcemia.

So, I was taken to the ER. After a stupid interaction with a stupid security guard, I was allowed to go up one floor and check in. After waiting in the waiting room for 30 minutes or so – all the while wondering when I was going to drop into a coma or experience heart failure.

Eventually they got me to an emergency bay, placed an IV, took a blood test to confirm the elevated results. Those results came back lower, but still high, so they treated me with Zometa. Eight hours later they took another blood test and it had dropped by more than a full unit. I was discharged just in time to go to my scheduled CT scan and ultimately get the test about three hours after it was scheduled.

Note well: I spent the night in an emergency room bay. I got no sleep. You don’t sleep there, with all the noise, the lights on all the time, the people walking past, loud talking, etc. Well, maybe you could do it, but I sure didn’t.

After all was said and done, it turned out my calcium levels were significantly lower than 15mg/dl, the level at which is widely considered a medical emergency. But it was still high and needed treatment.

From the emergency room, I proceeded to the CT center. After a lengthy wait, my presence was acknowledged and I drank the oral contrast they supplied. After another lengthy wait I had my IV catheter from the emergency room removed, and a bigger one placed. After another lengthy wait, I finally had my test – which lasted about 5x as long as my previous CTs, and utilized a hell of a lot of IV contrast, to the point that I had a very interesting flurry of instant (and short-lived) side effects.

So my status now: I’ve not slept in 32 hours. I have nothing on my MD Anderson clinic schedule tomorrow, so I’m planning to get some sleep soon and take it easy tomorrow. They have no unreported blood tests that might cause them to summon me to the ER again, so if they try, and I remain asymptomatic, I think I might judiciously use the words “Fuck off,” probably along with something to the effect of please adding whatever it is they want to do to me to my daily schedule. I mean, what the hell? This is terminal cancer. At some point you have to make some assertions in favor of your quality of life.

So, bottom line: Not happy that they kept me up all night. Not happy at the huge delays at CT. Not happy that I’ve been stuck 5 or 6 times during the last 22 hours. But very happy with my attending physician, and very happy that he advanced my understanding of my condition by a great deal. I give the Center an A+ for competence and a C- for doing realistic scheduling and I find the competence grade far more important.

Next step: Possible consultation with my attending over treatment options on Thursday or Friday. If this doesn’t happen, it will be one week from today. I’ll spend that week well; this place has all kinds of educational programs and lectures I can go see, and I’ve already asked for appointments with specialists in palliative care, pain control, and so forth. Also, there is the Johnson Spaceflight Center to go visit, and a bunch of other fun-type stuff.

UW Narrative

As promised, I’ve written an explanation of what happened at the University of Washington on June 11. Since I dated it back to June 12, just to keep the blog in chronological order, it might not show up on some RSS readers, so I’m linking to it here.

General Update

On July 4-5, we fly down to Houston for a visit at the MD Anderson Cancer Center. These people have already conducted themselves in a manner far more professional than the people at the University of Washington Medical Center – I’ll be writing about that experience in a bit, so I won’t go into that awful experience here.

My initial appointment there is July 7 – we’re getting there a couple days early to help with time zone and time-on-plane recovery.

The first day looks pretty routine, with an initial meeting with my doctor, Ahmed Kaseb, some meetings with my Patient Care Advocate – who seems to be an individual assigned to me who I can go to if I encounter any daunting bullshit, and a meeting with their department of social work, who are going to give me some help setting up an advance directive (bottom line: if I have my way, I won’t be resuscitated from anything) and a durable medical power of attorney. I will also have my blood taken and might even get to pee in a cup. I’ve done those so many times at this point that I might just sleep through these parts.

The second day they have me scheduled for a chest/abdomen/pelvic CT scan, and a chest x-ray. Also a piece of cake; I’ve ridden in CT machines at least four times at this point.

Remaining days will be spent with them conducting any remaining tests they want to do and then learning in more detail about my condition. University of Washington was totally useless for this, refusing to answer my questions through the gambit of using fewer words in answer than I used to ask. If the University of Washington was medically incorrect in their assessment, I expect MD Anderson to prepare a treatment schedule during this time, and it is possible I will see my first treatments within a few days of arriving at the Center. If they wash their hands of me like Washington did, I can at least expect to walk away with a better understanding of the medical issues involved. Getting that information is going to be very important to laying out some plans for the future, however brief it may be for me.

In the meantime, I’m doing pretty well. I’m still walking, and I feel on average that I’ve improved since the diagnosis was made, despite the lack of treatment. This is probably because my hepatologist, Dr. Geronimo Sahagun, spent some time with me talking about how to put together a diet that would be easier on my liver than my usual healthy, balanced diet. It may also be because my oncologist, Dr. Max Rabinowitz, and my GP, Dr. Robert Skala, have kept me supplied with palliative drugs to take the hard edges off the bad days. I am in good spirits. I’m struggling a little bit to deal with all the medications I’m on, to time them right and balance their side effects, but it isn’t too bad. My worst actual disease symptoms right now are some abdominal pain and an unsettled stomach that I’ve had continuously since April 10.

That’s all for now – check back for further info as things progress.

University of Washington Medical Center

After my diagnosis with liver cancer I was referred to two specialists – Dr. Sahagun for hepatology, and Dr. Max Rabinowitz for oncology. They immediately suggested that I go to the University of Washington Liver Center, and started making the arrangements. Despite being told that it would probably take a month or six weeks to get an appointment there, UW called me asking for an appointment two weeks in the future – on June 11. This was looked at by all as a Good Sign.

Unfortunately, things went downhill from there.

During the days prior to the appointment, I had to spend some time getting records transferred to Washington, including some CT and MRI scans. The way this works at Washington is, apparently, you sign off on transferring the records from your hospital, Washington imports them into their system, and then they send the original hospital CDs back you the patient. So I expected, and received, a couple radiology discs of my images.

Unfortunately, I also received some records from a patient (I’ll leave her unnamed) in Virginia who had recently undergone TACE for her tumor. At the time I considered this an innocent mistake. Yes, it is a big mistake, and one that is illegal to make, but sooner or later everyone makes a mistake, and I didn’t think it was fair to hold this against UW at the time.

I was also asked to hand-deliver some radiology discs when I arrived at the appointment. These were tests that were done thirteen days before the appointment, and they become important to the story towards the end.

I showed up on the day of the appointment, checked in, did some paperwork, and then was confused with another patient. Apparently, there’s a man in his 60’s who is getting treatment for a liver tumor at UW, but his treatment is complicated by a heart condition and mild diabetes. I learned this when a nurse appeared in the waiting area, sat down right next to me, and said “Mr. _________, as you know your situation is a little complicated by your heart and your diabetes, and that means we’re going to [modify treatment in some way I didn’t fully understand].” The whole time this was being said I was saying “excuse me,” in an attempt to get a word in edgewise to the effect that I was not Mr. ________. That point was finally made, and I was then asked, “You are not Mr. _________, of [city, state], born on [birthdate]?” At this point I wanted to reply by saying, “no, you moron, I’m not, and you just revealed a bunch more private information by asking me that.” What I actually said was, “Do I look sixty-some years old? And is there a reason I would lie about my identity?” The nurse left me alone at that point.

After a long wait, a nurse came out into the waiting room and started calling for “Scott.” Six or so times this was repeated. Scott is my middle name, and seeing there was nobody else there who was going to claim to be Scott, I walked up to the nurse and asked “Are you looking for Mr. ______?” She said, “yes, are you Scott ______?” I replied that I went by my first name. A puzzled look crossed her face. She read my chart for a distressingly long time. Finally she said “Oh, you are Jeff ______?” I said yes.

She took me back to a small examination room where she got “Scott’s” blood pressure (she just couldn’t wrap her mind around my first name, apparently). After she took it, she asked if my blood pressure was normally that low. Now the first page in my chart – which she was looking at when she asked this question – was a list of medications. First on the list is Nadalol, a medication whose main purpose is to lower blood pressure. I’m taking it because my tumors, by pressing on my portal vein, have forced blood in my abdomen to find different ways back to my chest, leading to enlarged veins called varices, which can burst and potentially kill you if you put too much stress on them. Lowering your blood pressure is a good way to protect from this.

So I tell the nurse, “well, I am on Nadolol, so that would explain the low blood pressure.” After a few minutes of puzzlement, this appeared to placate her concerns.

I was brought to a different examination room, where I was not really examined. A Nurse Practitioner had a perfunctory look at my eyes, ears, and throat, and palpated my abdomen for about 10 seconds. Most of the time was spent talking about bicycling, one of my passions, and apparently one of the NP’s as well.

The NP disappeared, sending me to lunch and telling me to return after a couple hours. I came back on time, and spent a while in the waiting room again. At length someone brought me to an examination room again. After a while, the NP and a surgeon showed up. The surgeon sat down and started going through a list of potential treatments for my cancer, explaining that each one was ruled out in my case for one reason or the other – the main reason, used to eliminate several treatments, being that the tumor had invaded the portal vein and irrevocably blocked it.

Incidentally, that assessment flatly contradicts the radiological assessment of my local radiologist. It may be a medically correct conclusion, but as far as I am concerned, I have no way of knowing.

The surgeon asked if I had any questions, and I had several written down. I started asking them, but the surgeon refused to use more words in his answers than I was using in asking the questions in the first place. At least one of the questions he answered with a yes, even though the question was not a yes/no question. The rest of his answers were as superficial and perfunctory as possible. I gave up on this and told him that was all I had. His response was that I should take some Nexavar, “go home, and die when it was convenient.”

After returning to Alaska, I had a follow-up appointment with Dr. Rabinowitz, who had received UW’s paperwork from my visit. In the paperwork, the surgeon directly contradicts many of the things he said to me in the appointment, including the bit about the tumor invading and blocking the portal vein. So now there are three separate medical disagreements about my case:

1. Local radiologists’ assessment.
2. UW surgeon’s assessment as explained to me.
3. UW surgeon’s assessment as explained in writing to my other doctors.

We decided to get a second opinion on UW’s assessment from the MD Anderson Cancer Center in Houston. In the course of doing this and getting records transferred, I talked to a secretary at UW who found my experience puzzling. According to her, UW’s decision not to take me as a patient should have been made from a records review without requiring my presence. The only time they make the patient come in for that kind of initial assessment is when UW wants to run additional tests. After she looked into it, she said that as far as she could tell the only reason they asked me to come to Seattle in person was to hand-deliver the radiology discs that were made 13 days before my appointment, because the secretary in charge of integrating them into my records was on vacation and wouldn’t be able to handle them if I had mailed them. So what I take away from this is that we spent $2,500 or so on last-minute plane tickets and hotels for the purpose of being UW’s errand boy.

And that is my first, and last, story about the University of Washington Medical Center.