Chemoretailtherapy

My lungs, apparently, improved overnight, so I was deemed eligible to get a dose of gemcitabine and docetaxel. This is the last hit of my second cycle, and I was glad to get it in. Now we wait a week and scan to see how things are going.

After I finished chemo, L. and I went shopping. My glasses disappeared a month or so ago when I went into surgery, and I've been wearing a pair of frames I thought were very cool in 1999. Yes, I'm hitting on all cylinders, appearance-wise: weight loss has given me a skeletal mien, my hair is falling out, but it's all OK because I can't see myself that well with my geek-glasses. So we went shopping, which I normally hate.

But it turns out that while I say I hate shopping -- and I have all kinds of boring rants to prove it, from the irresponsible materialism of our culture to the luxuryification of previously mundane objects like blue jeans and clothes dryers (this really bothers me; not because I don't like diva large appliances, but because I do) -- I really, really like stuff , and if someone is willing and able to sell me that stuff with intelligence, insight, humor and civility, I actually don't mind shopping at all. It was painless, and I will soon have a nice pair of glasses, thanks to these folks. Best of all, the hospital is paying for them.

Sarcoma for dictators

When it was early in this whole thing and L. and I were repeatedly lamenting the unfairness of it all -- why me? why not? damn you, cruel and indifferent universe! -- we more than once speculated about who we would give the sarcoma to, if only we could. I didn't think through the ethics of the transfer, but my base criteria were that the person needed to be really bad and giving them an incurable illness had to have the potential of making life better for other people. I considered war criminal Dick Cheney; Sudan's Bashir; Kim Jong Il; the guy in Uzbekistan who boils people alive and a few others. At that time, I decided that Robert Mugabe of Zimbabwe was about the most deserving person I could think of for my epithelioid sarcoma.

Samantha Power wrote in a 2005 issue of The Atlantic:

The country's economy in 1997 was the fastest growing in all of Africa; now it is the fastest shrinking. A onetime net exporter of maize, cotton, beef, tobacco, roses, and sugarcane now exports only its educated professionals who are fleeing by the tens of thousands. Although Zimbabwe has some of the richest farmland in Africa, children with distended bellies have begun arriving at school looking like miniature pregnant women.

How could the breadbasket of Africa have deteriorated so quickly into the continent's basket case? The answer is Robert Mugabe, now seventy-nine, who by his actions has compiled something of a "how-to" manual for national destruction.

Things got a lot worse from there. The inflation rate in the country is now something like 66,000 percent.

But Zimbabwe held elections recently, and Mugabe's party has lost the Parliament. There may be runoff for the presidency, and it may be brutal, but perhaps not. I'm hoping that the dictator's disastrous reign will soon be at an end.

Update: Damnit, the reporter who wrote the story linked above was arrested during a Mugabe crackdown. This isn't exactly putting me back into love for humanity and reverence for life mode.

Body in mind

The night before last, I climbed into bed with my daughter and a sharp pain started jangling around behind my shoulder blade. I ignored it and went to bed. It was still there when I woke up. As I went about my business, it gradually began to dawn on me that hey, the shoulder pain is still there; there's some pain in my rib cage; and if I'm honest with myself, I'm breathing even worse than usual. 

Damn, I have another pneumothorax.

So what do I do? It's late in the day, hard to get admitted and maybe too late to see an interventional radiologist. Getting a chest tube in the emergency room isn't the worst thing that has happened to me, but I'd prefer not to repeat the experience. (If it becomes necessary again, at least this time I will know to not let the doc show me the tube kit, which includes a foot-long, panic-summoning needle inserter.) I'd like to call the doctor, just to be safe and all, but if I call liability and common sense are going to send me spiraling into medical intervention, perhaps up to including hugging a vinyl pillow and half suffocating under a vinyl drape as someone shoves a tube through my ribs with no anesthesia. We decide not to call; we'll deal with this in the morning.

*

I'm so sure that I have another pneumothorax, so convinced, that I start preparing for an admission. I take a shower and shave, so I won't look like a homeless person within minutes of being admitted into the hospital as usual. I pack a book or two, my ipod, a laptop with a couple of movies and a newly ripped audiobook. I even charge my cell phone. For me these are expedition-worthy preparations, so I start to convince myself that my lungs are probably fine since I'm actually somewhat ready to go to the hospital.

*

One of the many problems with a prolonged illness is that it completely chips away any sense you might have of bodily well-being. I no longer take much pleasure in my carcass; it's more like a very old car on a very long trip, requiring constant monitoring of tires, radiator, alternator, brakes and and a half-dozen or so suspicious rattles and wheezes. This kind of feeling is near universal. Burnt by strange pains and buffeted by bad news, cancer patients are at risk of reading any stitch in the side or headache as evidence of metastasis. 

I once wrote a note to someone on the online sarcoma community who was worried that his backache might be evidence of epithelioid sarcoma mets to the spine; I said, essentially, have your doctor check it out, but ES rarely spreads to the spine, so you probably shouldn't worry until your doc tells you to worry. You probably have a backache. It happens. (I was, and am, a big believer in outsourcing anxiety.) Another patient immediately added that ES can metastasize ANYWHERE and was capable of ANYTHING. Thanks, lady. So much for my little dutch boy attempt to reassure. The guy, of course, just had a backache.

*

Cut to this morning at the hospital: I do indeed have a loculated pneumothorax -- a couple of mini air bubbles that have managed to form despite my pleura being tacked to the chest wall by pleurodesis. So no chemo, but no admission either. The plan will be to look for improvement tomorrow and hopefully proceed with the chemo. If the situation is worse or the same, I may be looking at some combination of admission, chest tube and VATS. In the meantime, I get to sleep in my own bed and eat the lamb that P. brought over.

Public Service Announcement

The good folks at the Liddy Shriver Sarcoma Initiative have produced a short video (in several languages) offering basic information about sarcoma and seeking participants for this summer's "Team Sarcoma" fundraising and outreach event. I'd recommend watching the video without sound; the stock music is annoying. Also, if you already know more than you want to know about soft-tissue sarcoma, the Shriver initiative site is a rich trove of more advanced information about clinical trials, new research, etc.

The video:

"One Life, Live It"

About eight months ago, a 20-year-old woman, Nicole Morgan, from Derbyshire, England, was diagnosed with metastatic epithelioid sarcoma. She died in late February. Her obituary from her small local paper is here. L. pointed this piece out to me. We were both struck by Nicole's willfulness, defiance and bravery.

Her motto had always been "one life, live it", a philosophy she strongly believed in.

And a few weeks before she died, she defied her parents and doctors by having the words tattooed on to her wrist.

Mum Tracey said: "We told her not to go because the doctors had said her platelet count was low but she told us that if we didn't take her she would just take a taxi and get it done anyway."

About 15 family members and friends also got similar tattoos. She was a favorite fan of the local rugby club. She asked for her coffin to be driven to the church in a white hearse pulled by two white horses. Horses! She was so young! But a ghastly attraction for youth, unfortunately, is one of sarcoma's many horrors.

*

I can't help imagining this: If after death we rise up as spirits and wait to be judged, on arrival would Nicole draw back her cooling tattooed wrist and cuff whatever she found there?

My lungs, on air

I'm feeling like a bad storyteller here, the kind who says,
"And then... and then... and by the way...." So be it: The
idea is to write a narrative of the illness that will
eventually be up to date, so my reactions are fresher and
more detailed then they are when I'm trying to recall the
particulars of byegone tedious and narcotic-soaked days in the
hospital.

So, anyway, after being bounced from chemo and admitted to
the hospital with another collapsed lung, this time on the
previously "good" side, Dr. Lump-not-Split was suspicious of
metastasis, despite repeated CT and MRI studies and testing
of some fluid evacuated from the pleura for malignant cells.
(This suspicion wasn't -- isn't -- wrong; while the studies
are possibly capable of picking up tiny pulmonary nodules of
about 5mm plus-or-minus a couple millimeters, such tiny
nodules are easy to miss.) Enter VATS. A surgeon makes about
1cm incision and inserts a video camera into the chest
cavity. In my case, the doctor completely deflated the
relevant lung, inspected it for abnormalities, took a biopsy
(which was normal!), and blew in some talc for
a pleurodesis. I found the immediate aftermath of the
procedure difficult: I felt as though I had been kicked in
theribs, and I also felt a milder version of the same
feeling of lung constriction I had after having pleurodesis
through a chest tube. I was discharged from the hospital
about two days after the procedure with a sore chest that
became intensely painful when I coughed, sneezed or laughed.
Humor was outlawed for a while. Fortunately, the pain
steadily decreased. I'd say it was more or less gone within
10 days; my reward for healing was getting to restart
chemo.

I should point out here that while VATS is a great
technique for all sorts of lung maintenance (biopsies,
removing nodules, fixing pleural effusions and pneumothorax,
even lobectomies) and generally has similar results and
quicker recovery than old-school open lung surgery, the
video camera's resolution is such that it's hard for doctors
to see small lung nodules (one five-year old paper I saw
said 10mm and down, which surprised me) unless they know
what they are looking for. In the case of
early-stage sarcoma lung mets, in which there might be
dozens of unscannable miniscule nodules, the gold standard
for detection/resection is still opening a large incision,
spreading the ribs and allowing the surgeon to take every
bit of your lung in his or her hands and meticulously feel
for lumps and bumps. I'll pass on that one for now.

And then I had chemo, and it was routine, except for the
usual exhaustion, and the shortness of breath, and then
I... Sorry.

Lumps and splits

I'm just trying to get up to date here before I start pontificating about other topics again. 

After the awful pleurodesis and overenthusiastic pain management, I recovered from the various chest tubes and antibiotics and went home for a while before beginning chemotherapy for the second time. After much deliberation, I chose the relatively toxic gemcitabine-docetaxel (gemzar/taxotere, or gem/tax) regimen I successfully took the previous year rather than the relatively tolerable temodar (temozolomide) recommended by my local doctor. I received very little help on making the decision; an e-mail to the NY doctor, the gem/tax proponent, wasn't returned, and the case he made to my local doctor in favor of reusing the drugs wasn't something that she could or would clearly articulate. 

I decided on gem/tax because I wanted to pursue what I believed was the more aggressive treatment, and because new scans and showed the disease swimming through my retroperitoneal lymph nodes. The plan was to split the dose of taxotere, giving one half the first week of treatmentand the second the following week. The third week of each cycle would be for rest. I tolerated the first infusion of the drugs well, returned the following week for another infusion, and discovered that my lung had collapsed AGAIN. 

I was admitted to the hospital, and met a new pulmonologist who, appropos of my sarcoma and repeated collapsed lungs, said, "I'm a lumper, not a splitter." That is, he was far more inclined to attribute the lung issues to the cancer than to split them off as something unrelated.

In the next exciting chapter, we'll explore VATS -- visually aided thoracic surgery (which requires some "splitting" alas) -- and get provisionally good news from lung biopsies. Perhaps we'll even start chemo again....

Take the meds

What I really wanted to say below was: take the meds. Ask for them if you have to — though it's always nice if a nurse comes to you and asks you. There's no shame in it, and the risk that someone who has never had trouble with substances before will develop an addiction to pain-killers in the hospital is very slight. Stoicism — here defined narrowly as not taking drugs that can make you more comfortable when you need them — is bad for body and mind and, ultimately your recovery. You'll cut them out when you feel better.

Now I'll reinforce this point with an excerpt from the New York Times and then undercut everything with a short story about my own recent hospitalization.

First let's take a whack at the addiction argument with an excerpt from the Times, from an interesting article about a pain doctor:

Virtually everyone who takes opioids will become physically dependent on them, which means that withdrawal symptoms like nausea and sweats can occur if usage ends abruptly. But tapering off gradually allows most people to avoid those symptoms, and physical dependence is not the same thing as addiction. Addiction — which is defined by cravings, loss of control and a psychological compulsion to take a drug even when it is harmful — occurs in patients with a predisposition (biological or otherwise) to become addicted. At the very least, these include just below 10 percent of Americans, the number estimated by the United States Department of Health and Human Services to have active substance-abuse problems. Even a predisposition to addiction, however, doesn’t mean a patient will become addicted to opioids. Vast numbers do not. Pain patients without prior abuse problems most likely run little risk.

With this is in mind, and lungs agonizingly encased in concrete, my initial attitude to pain medicine after the pleurodesis was similar to James Brown's approach to funk: bring it to me.

Patient-controlled analgesia? Check. IV narcotics, check. Oral stuff for breakthroughs, check. I took what they gave me, and they gave me a lot because I was in really difficult pain and the hospital staff from attending physicians down believe strongly in keeping patients, especially cancer patients, comfortable.

This regimen, indeed, made me hurt a whole lot less. 

But it also melted reality. 

I talked little. I had few coherent thoughts. When I lifted a glass to my lips for a quick sip of water, I'd fall asleep mid-rise and wake when the cold water splashed all over. Instead of being "behind the pain" with the medicine, I was ahead of it – and it took a disconcertingly long time to back the drugs off and catch up. At one point, I was possessed with an overwhelming desire to sleep and a sense, possibly accurate, that if I let my head drift down the six inches or so to my pillow and stopped straining to keep my eyes open, I would awaken surrounded by a resuscitation team. It was a creepy sensation, feeling like I had to stay awake to stay alive.

So, yeah, we'll call this episode a pain management failure. I ended up alive, straight, and with a budding pneumonia in one of my lungs; courtesy, probably, of aspirating a little food or water into the lung during one of my junkie nods. Annoyingly, a few of the staff were a little punitive about the whole thing, a little finger-waggy.  Our reaction was, "Hey, we weren't begging for this stuff. You urged us to manage the pain." But despite the shocking news that taking a lot of narcotics in a short period of time has a downside, my experience and reading tell me that almost everything about medical culture in the US is still geared to undertreat pain rather than take it too seriously, and that making the hurting stop (or, more realistically, slow down) has few practical downsides. So take the meds, tough guy or gal, just silence your inner James Brown.

Rate your pain on a scale of....

New-school doctors and nurses sometimes call pain "the fifth vital sign" but the only way to measure it is by asking. And the question they usually ask, at least around here, is something like, "Please rate your pain on a scale of 1 to 10, with one being no pain at all and 10 being the worst pain you can imagine."

L. finds the question ridiculous. It launches her on a series of digressions that, paradoxically, might serve to distract a little bit from the pain. You can see how it goes: Hmmmm…. The worst pain you can imagine, not the worst you've experienced… What is a drill slowly turning through the top of your foot? Having your fingernails pulled out one by one? Childbirth? A limb being hacked off with a dull spade?

Somehow that 10 end of the scale is an invitation to weird speculation, and the little faces that sometimes accompany the scale aren't much help for clarifying matters. The face is smiling at stage 1 — but also stage 2. If he's hurting, why is he smiling?

But the scale, even the little cartoons, has meaning – there are big norms around that little scale and, more relevant to the hospital patient, your self-rating plays a role whether you will get pain medicine and what kind you will get. (To some extent. A nurse isn't going to take a nine seriously if you're lolling back on your pillows riveted to Top Chef.) So it makes sense to try and understand the norms underlying the faces so that you can rate your pain in terms that don't over- or understate reality ("For me a 10 is being doused with gasoline and lit on fire, and I feel much better than that even though I can't move from the fetal position, so my pain is a 4." Nice logic, but for the less hardy souls the nurse sees every day, this is more like a 6 or 7, so you haven't helped yourself out.)

This mashed up, multilingual scale from UCLA can help calibrate your internal pain benchmarks, even as it robs one of the perverse sport of speculating on the worst pain you can imagine. In this scheme, pain of five or above is pain you can't get off your mind; the clinical goal would probably be to medicate it down to 3-4 territory, where the pain is annoying and might stop you from, say, getting up but isn't on your mind constantly. The scale also offers a less apocalyptic view of 10: there's crying or moaning, but no crackle of gasoline flames or thunk of a dull spade. This is preferable, I think

More is how you live...

Long silences on cancer blogs are bad. Not as bad as the e-mail titled "Down for the Count" I once sent a close friend, but bad anyway. The day after I'd exposed my little nicks and cuts from chest tube misery -- before, even, I'd managed to take a shower -- I went to work and started feeling a little funny. A chest x-ray seemed smart. So I left work, got the X-ray, and checked into the hospital. Another pneumothorax to add to my collection of pneumothoraces.

*

It's been a while, and I can't really get into the details of the hospital stay now because other stuff has happened, but the whole experience was tough. The standard treatment for recurrent pneumos is a procedure called pleurodesis. 

Backing up, your lungs are essentially double bagged. In between the two "bags," or pleura, is an open area called the pleural space. When a lung "collapses," this generally means that it springs a leak and starts shooting air into the pleural space, raising the pressure in such a way that the lung can't reexpand. But close the space by sticking the inner "bag" around the lungs to the outer "bag" attached to the chest wall, and your problems with pneumothoraces are, hopefully, over.

Problem is, this process sucks. The simple way to do it is to get a bit of morphine and then have a doctor inject a small amount (50ccs or so) of talc slurry through your chest tube into the plural space. You swish the talc around by lying on your bed for a while, then, a few hours later, an inflammatory process starts that closes the pleural space. This hurts a little, but you manage it with analgesia. In my case, the process went down like this: Morphine, OK; talc, oh my god! I felt as if a concrete slurry was being pumped into my lungs, hardening around them instantly and choking with within. The pulmonologist tried to back off a few ccs as I started thrashing and weezing and hurling imprecations in a classic respiratory-impaired-bad-guy voice. Then, somewhat stunningly, the dude leaves! The concrete continues to harden and block my breath, and LA asks, "Do you need help?" And I sort of choke out an affirmative.

And this is where the doctors and nurses begin "managing my pain." This is a key principle in the onc ward in the cold state, one that I am greatly appreciative of. The staff is good at it, and I never really thought there was a downside to, you know, not being pained. But reality is more complicated than that, as I'll explain in a bit.