May 4, 2008
And the brown lady… but they’re never around at the same time. Perhaps their lawyers (Jewish-looking sea-gulls, no doubt) were able to come to an agreement on visitation rights.  
And the brown lady… but they’re never around at the same time. Perhaps their lawyers (Jewish-looking sea-gulls, no doubt) were able to come to an agreement on visitation rights.  

Nightmare

I recently had a nightmare come true. I have discovered that being confronted with the reality of a nightmare: “you have cancer,” for example, is nothing like the nagging anxieties that accompany a long-running terror. I suspect it is one thing to be confronted by an insoluble nightmare: “your beloved dog is dead” and quite another to face a potentially-soluble one: “you need to fight off a treatable but deadly disease.” My experience with the latter has been that condensing diffuse dread into a defined challenge transforms an emotional quagmire into a task. Once the rational, purpose-driven, task-accomplishment frame of mind takes over, it is harder (but not impossible) to be terrified into quivering impotence.

Other times, as in the case of long-feared social confrontations, the reality occasionally turns out to fall far short of one one’s expectations. In my Passover update I described the “utter terror” I experience when I imagine the hoses of my catheter might “get caught on something and the catheter will be ripped out of my arm. It runs… into the vena cava (the big vein that brings blood to the heart)… I have a recurring waking nightmare where it gets torn out and I bleed out or lose an arm or something. I… have learned to sleep without really sleeping…”

On Sunday night, I was working on a final exam from my first semester of graduate school (I was admitted to the hospital on the last day of final exams in December). I was offered an A- but allowed to do additional work to make a run at a possible A. That they even made this offer says a lot about the kindness and character of my graduate program and its faculty/staff. Those of you who know me well will be unsurprised to learn that I felt compelled to pursue the higher grade. You will also be unsurprised that a) when my family arrived at my apartment in mid-hospital stay, it looked like a hand grenade had exploded inside a small International Relations library and therefore b) all of my reading materials for the exam had been filed away neatly (needless to say, untraceably) and c) in my typically ADD-perfectionist way, I stayed up until the very last possible moment working on the exam.

I fell asleep around 7AM and around noon, I leaned over the side of my bed and saw a smallish puddle of red liquid. Lest you think I am some combination of paranoid and intelligent, I saw this puddle and thought “hmm, that looks like it might be blood.” I then tried to inspect it more closely and tumbled out of bed, over my shoulder, flat onto my ass. I managed to miss most of the blood-like substance, at least. My awkward gymnastics also convinced me that I was not noticeably injured. I could not find a wound, and did not feel any pain, so I concluded that the blood did not come from me: a wounded victim of Anastasia’s mouse-hunting, a bloody nose (my mom’s nose, obviously), or something… my best defense is that I was very tired and less than 100% functional.

About two hours later, I was feeling a little better, and ready to shower. When I took off my shirt, I saw my catheter nightmare come to life.

It’s not as bad as it looks, and it didn’t hurt. The catheter is still 50% functional.
It’s not as bad as it looks, and it didn’t hurt. The catheter is still 50% functional.
May 3, 2008

Passover Update 4/19/08

All –

[Advance warning: I wrote this thinking that some images might help convey the experience of living with cancer. If you are easily upset by things like veins and injections, or images of cats and ducks, I suggest you cut and paste this into text or only read the first two paragraphs.]

First, the medical situation. In many ways, the news on this front is positive. As you may recall, I have to have 12 chemotherapy treatments (2 a month, 6 months). Every third of the way through (4 treatments) I am supposed to have scans to confirm that the treatments are working. I spoke with my nurse last week to ask why I hadn’t been pumped full of radioactive sugar and stuffed in a metal donut with spinning magnet doohickeys. She told me that my oncologist decided that my first re-staging scan (after treatment 4) was so good that there was no reason to re-scan this time.

This is good news (Mom says, “VERY good news!”) and in typically Jewish fashion, I have found a way of making it upsetting. Every time I get pain in my chest, or have trouble swallowing, I get a mild panicky feeling that something is growing in my chest again. There is a special kind of terror that comes from having found out about cancer from seemingly insignificant symptoms – in my case, night sweats, a very bad chest cold, trouble swallowing and breathing. It is hard not to become a hypochondriac. My oncologist half-jokingly chided me for complaining about “every little thing,” although he knows that I over-report because little things could matter in big ways. One particular reason I need to avoid seeming like a panic-stricken moron is that it increases the pressure on me to “(soft voice) see someone, a professional.” If any of you ever consider a run for president or Secretary of Defense, please consider fixing this problem: people like me can’t see “mental health professionals.” without jeopardizing our careers because we will have to tell the people who run our background checks and waive our right to medical confidentiality. Personally, I don’t like shrinks, so this doesn’t bother me too much – but a lot of people are coming home with combat stress. Their most valuable possession may be their Top Secret/SCI clearance (which opens a lot of private sector doors) and they have to choose between risking it and seeking care for their PTSD and other issues.

I decided that in this update, I would try to convey the everydayness of my disease. It’s one thing to explain to people what I have, how far advanced it is, how they treat it, how they discovered it, and other dry details. It’s another trying to relay the experience so that others can see through my eyes. I recently tried writing a letter where I attempted to explain how cancer has dramatically altered my life. I was trying to explain why even “cured” patients only “get over” their cancer in the way that one “gets over” the death of a loved one. After about 5,000 words, I realized that I was a) doing a bad job and b) nowhere near done. Keeping in mind the 1:1000 picture:word ratio, I have decided to make this note a bit of a visual show-and-tell so you all can walk in my shoes for a bit. I hope it works.

Let’s start at the beginning: every day when I wake up, I take my daily medicines: Allopurinol, Prevacid, Colase.
This picture shows my medicine basket (which includes other drugs I take for nausea, a lot of Tylenol and my prescription painkillers):
This picture shows my medicine basket (which includes other drugs I take for nausea, a lot of Tylenol and my prescription painkillers):

Allopurinol is a medicine that prevents Tumor Lysis Syndrome. As chemotherapy kills cells (hopefully mostly tumor cells) they “lyse” or collapse/explode. The remnants of lysed cells are toxic, and if enough of them accumulate in the body, it can cause TLS, which is apparently very unpleasant. Allopurinol helps the body excrete lysed-cell toxins. Everything I am taking, including the anti-nausea drugs and painkillers, causes constipation, which Colace helps mitigate. Prevacid prevents heartburn. Chemo drugs are “anti-neoplastic drugs” – that is, they kill all “new [cell] plasm” e.g. anything that is rapidly growing or dividing. Tumor cells divide more rapidly than normal cells, so the chemo kills them. It also kills or injures other cells that divide rapidly, including: sperm, mucus membranes in the nose and mouth (sometimes causing sores), and cells of the digestive tract, causing heartburn, indigestion and nausea. 

After I wake up and my mother tries to make me eat breakfast, I go to wash up. This used to be simple. Now, because of the catheter in my arm, a full-body shower or bath requires that I have my mother cover my arm with a garbage bag, poke a hole in the bottom, pull my hand out, tape the bag around my wrist and tie the upper opening tight around my upper arm. This keeps the catheter from getting soaked. Taking a bath (with a cup to splash water away from the affected arm) doesn’t really do the job because I also have to wash my hair. I’ll talk more about my hair later, but suffice to say that taking a bath in water covered in a skein of hair like a nightmarish Chemotherapy Sargasso Sea does not make a man feel clean.

Even before I take my clothes off, my cancer is externally noticeable. I have a scar on my neck.
Even before I take my clothes off, my cancer is externally noticeable. I have a scar on my neck.
When I was first hospitalized, they did not know what the mass in my chest was. A biopsy could provide answers, but this created a problem: Whatever-it-Was was wrapped around my airway and my superior vena cava and right next to my aorta. It looked a little like this (in the image to the left, the whitish thing towards the top of the ribcage is the tumor, the whitish thing towards the bottom right is the heart, and the image on the right shows how the heart is compressed by the tumor):
When I was first hospitalized, they did not know what the mass in my chest was. A biopsy could provide answers, but this created a problem: Whatever-it-Was was wrapped around my airway and my superior vena cava and right next to my aorta. It looked a little like this (in the image to the left, the whitish thing towards the top of the ribcage is the tumor, the whitish thing towards the bottom right is the heart, and the image on the right shows how the heart is compressed by the tumor):

The location of the tumor created a problem: there was no way to get access to the tumor for a biopsy without putting pressure on my airway or heart. Because my airway was already “in crisis” (read: very, very, narrow) further constricting it while pressurizing my heart was deemed a Bad Idea that Might Kill the Patient. My ingenious thoracic surgeon solved this problem by cutting open the little area where the scar is. It is right above the “notch” where the collarbones intersect. There are no major blood vessels, muscles or nerves there. Doing it this way avoided having to pry apart my ribs with a medieval-torture-device looking thing, or giving me a general anesthetic that might result in the “permanent closure of [my] airway.”  So, good news: no general anesthetic. Bad news: local anesthetic, which, it turns out, does not work very well on me (standard procedure is to use Lidocaine, which does not really work on me. They now know to use Markane (sp.?) but at the time, everyone was a little too worried about death to be too worked up about using excessive amounts of local anesthetic). Incidentally, the surgeon, a UC Berkeley alum (go Bears!), refused to let other surgeons do the surgery because she considered it too complicated for an inferior surgeon. No Operating Room had been booked, so she promised to stay at the hospital for as long as it took to get one. On top of that, she also made other members of her thoracic surgery team (most notably an anesthesiologist) stay. Several hours after her shift ended, an OR came open.  

When they did the surgery, I was fully conscious. I did not handle this event Like a Man. They accidentally dropped a sheet over my head at the start. A nurse apologized and said they’d move it in a minute. I said “I plan to lay here with my eyes tightly shut. Leave it, it helps.” They did, and only laughed at me a little.

Every day when I climb in the shower, I see the unpleasant, lingering side-effects of steroids. Some patients experience severe psychological stress from the scarring effects of sustained steroid consumption (see the NYT story below).
Here you can see my upper chest and shoulder. You should be able to see scars from steroid-induced sores, and largish blue veins. Because the tumor restricted blood flow and diverted my blood supply to feed itself, my body tried to build blood vessels around it. As the tumor was inside my ribcage, new blood vessels (or old, enlarged ones) formed outside it, just under the skin. When my oncologist first asked me “have you noticed that your upper-body blood vessels are a lot more visible?” I said “Yes, but I’ve been doing a lot of upper body work in the gym.” He laughed at me. He’s a nice guy, for someone who fills people with toxic chemicals for a living.
Here you can see my upper chest and shoulder. You should be able to see scars from steroid-induced sores, and largish blue veins. Because the tumor restricted blood flow and diverted my blood supply to feed itself, my body tried to build blood vessels around it. As the tumor was inside my ribcage, new blood vessels (or old, enlarged ones) formed outside it, just under the skin. When my oncologist first asked me “have you noticed that your upper-body blood vessels are a lot more visible?” I said “Yes, but I’ve been doing a lot of upper body work in the gym.” He laughed at me. He’s a nice guy, for someone who fills people with toxic chemicals for a living.
In other news, I have had no serious problems with the catheter that in my arm, called a PICC line. A woman who had a similar device implanted in her chest wrote a memoir that was excerpted in the NY Times. Having had quite a bit of steroids and a nasty conversation or two (ok, twenty) about my future fertility, I sometimes feel similarly about my sex life. Unfortunately, I remember the probable effects of radiation and chemotherapy on fetal development. Having been brought up with a strong, pro-choice mother figure, this probably wouldn’t have bothered me, but for my good friend Prof. Lundberg. Chris, in about five sentences explained to me why he is a single-issue voter on abortion. I can’t say that he swayed me on the public policy question. But as far as my personal choices are concerned, he persuaded me to err on the side of protecting defenseless life. For me, right now that means not taking a chance, however small, of creating a being with virtually no shot at a normal, happy life.
The Times excerpt is also dead-on in its description of the little daily annoyances that come with having a catheter coming out of one’s body. I for example, have learned to cup my hand and hold the little blue nozzles if I ever walk around in a t-shirt.
The Times excerpt is also dead-on in its description of the little daily annoyances that come with having a catheter coming out of one’s body. I for example, have learned to cup my hand and hold the little blue nozzles if I ever walk around in a t-shirt.

Now, you might be wondering what that brown-colored thing on my arm is. It is a single leg length of knee-high panty hose. Sometimes I wonder if I will accidentally pick up a panty hose fetishist now that short-sleeve season is upon us. When I first got the line put in, the home nursing people managed to completely screw up creating an appointment schedule for me, so I had to have my PICC cleaned in the hospital. There, a home nurse coordinator with a face like a well-used catcher’s mitt and giant hands taught me how to flush the PICC line with Heparin and Saline. She told me the best way to keep it from getting caught on things was to use a single leg of panty hose. This would have been totally unamusing except that as she detailed the maintenance procedures she made it clear that she believed that the singular of “panty hose” was “panty ho.” After about 15 minutes of “so you put the panty ho over the blue thing, then stretch the panty ho down past the elbow, etc.” I got left alone to giggle uncontrollably.

I live in utter terror that the nozzles, or the tubes that are attached to them, will get caught on something and the catheter will be ripped out of my arm. It runs from mid-arm, into my brachial vein, and from there into the vena cava (the big vein that brings blood to the heart). I have a recurring waking nightmare where it gets torn out and I bleed out or lose an arm or something. I too have learned to sleep without really sleeping so that I make sure I won’t get tangled while in bed.

Although it doesn’t look too pleasant, this thing doesn’t hurt that much. From time to time, when my nurse comes to visit me, she cleans it with alcohol and some other disinfectant. That sort of hurts, sometimes – especially if she is insufficiently gentle with the blue thing you can see going into the vein. Below the blue thing, there are two sets of clamps and nozzles (they keep the liquid from dripping out and me from bleeding to death through the catheter). Everything except for the part that goes into the vein, including the hoses, and the thing with the arrows (called a StatLock) is replaceable. Every week, all those components get swapped out for new ones as a sanitary precaution. I have a pretty blonde home nurse (more on her later). The big upside of the PICC is that it makes chemo almost painless. I can just about sleep through the injections now, although they usually replace all the components before I get treated and then the PICC is sore for a while.

The hoses you see are filled with Heparin. It’s called a Heparin Lock. Heparin is an anti-clotting agent (anti-coagulant) made from processed pig intestines. It keeps the line from causing an infection, and also prevents clots from forming.  

You may recall that Heparin has been in the news lately. This is because a company called Baxter was using two plants in China to produce Heparin from pig intestines. The FDA has been struggling to deal with the globalization of pharma production – factories in India and China obviously complicate inspection and quality control efforts. Predictably, the agency’s practices and budget haven’t kept pace with the transnational diffusion of production sites. It turns out that two Baxter plants in China were in villages that, when Anglicized, have similar-looking names. FDA inspected one, but not the other. A bunch of contaminated Heparin made it into the system in this country, and dozens of people died, hundreds were sick.

As my PICC was being emplaced, I asked where the Heparin they were using was manufactured. Appallingly, I got blank, mute stares. I explained the backstory and they got out the box and said: “Oh, it’s okay, you have nothing to worry about – this is made in Lake Forest, IL.” This is about as realistic as that Pace Salsa commercial where they go “this stuff’s made in New Yawk City!” I was raised about 15 minutes from Lake Forest, and let me tell you – they don’t manufacture a damned thing in Lake Forest. That’s where some pharma company has its HQ, I’m sure. I (politely) relayed this information to my nurses, who (politely) kept trying to find out if the Heparin would kill me. They never did determine where the chemicals were from, but I’m still alive. I personally researched the Heparin they gave me for home use and it’s not from Baxter (but might be from China), so fingers crossed.

Every night, I/we lay out the stuff you see below: