Tuesday, June 26, 2007

Relief, Dedication, and Suffering

I now have attached to my body five leads, and at least five different tubes carrying various fluids into my body, hooked up to their various beeping and grunting pumps. I am a mess of wires and tubing, plastic bracelets, buttons, and sweat.

As may be remembered, or willfully forgotten, there was a point a few months back when my blood-borne tumor markers were in the normal range, and various doctors were being consulted as to whether or not it was necessary and/or possible to surgically remove what looked like a bunch of dead tumor still hanging around in my abdomen (the entry for Thursday April 5, 2007 will give more details for anyone interested). Then my tumor markers shot back up, and the whole question was rendered moot as this current course of chemotherapy was planned. Now that I am approaching the end of this phase, it is time to begin thinking about what happens next. A conversation with the head oncologist here clarified something very important, and left a huge, shimmering puddle of relief in its wake. No matter what the results of the CT scan that will be done at the end of next week, there will be no permanently handicapping surgery. It may still be necessary for me to undergo a major operation to remove any remaining tumor mass, but this surgery, if performed, will not involve the removal of my bladder and rectum, which at one point was being considered. If given a 20% chance that I would die of a secondary tumor in ten years without the bladder-and-rectum-removing surgery, but a much higher probability that I would live into old age with holes in my body emptying fetid waste into bags slung around my legs, what would I have done? How could I possibly make this decision, in this state? What would it mean to my family and friends to tell them that I was willing to risk it, and what would it mean to my sense of self if I bet on longevity? With ecstasy, I am hereby dropping the whole topic.

The beginning part of this week went very well. My days fell into a routine which was by no standards exciting, but in retrospect, great. We would go into the hospital around 8:30 (when we were being good), and lobby for a private room to escape the maddening beeping of other peoples’ IV pumps. I get hooked up via my bionic contraption to a huge bag of saline, which keeps me grunting my way over to the bathroom throughout the day. Blood is drawn, analyzed, and I am given electrolytes if necessary. I swallow lots of pills designed to keep the meanies from eating me from the inside. I sit there for around five hours, sometimes sleeping, sometimes reading, talking with my mother, allowing her to convince me to eat. Lately I have spent some quality time trying to catch up with my generation, awkwardly punching buttons on personal video game consoles loaned by friends. My spirits were kept sky-high by some stunningly incredible love and caring.

Saturday night, things started getting ugly. I had a delirious night, thrashing the sheets in the throes of half-awake dreams, punctuated by blindingly painful abdominal cramps. Sunday may have been the worst day that I have had so far during this entire ordeal, though this is a case in which I am happy to have a slippery memory. The basic problem throughout the whole day was pain control. Apparently rule number 1 with pain is that as long as it is not allowed to spiral out of control, it can be relatively easily managed, but once it gets its dirty festering claws in you, it takes gargantuan efforts to battle. Pain management must be among the most difficult jobs a doctor has. How do you balance the patient’s awareness against their misery? How do you know you are not being scammed, when the patients themselves may not realize that they have become dependent? Does the patient really know what they are asking for? How do you distinguish between people “bellyaching” and something important to take care of immediately? How do you not create an addiction while trying to help? And, by the way, careful not to OD anyone.

Up to this time, I was being given oral oxycodone sporadically, and even had it been given on time, it was just simply not up to the job. For the entire day I was clutching my gut in moderate pain, punctuated by spasms every fifteen minutes or so that would send me into a panic of sweat and moans for a few minutes. Every time I would try to eat (bland, small bites, very slowly), I would be rewarded with spasms so sharp that they would propel the food right back out. By the end of the day, I was having that reaction to the amount of water that it took to swallow a pill.

They decided to admit me around 5, but since they didn’t have any free beds in the BMT unit, I was sent to the general oncology unit just down the hall. It was a mistake to have acquiesced at all. The difference in competence and training of both the nurses and doctors was flagrant. I arrived around 6, and told the nurse that I was in pain, and cold. It took approximately an hour for a blanket to arrive, during which I was clenched, curled up in a ball trying to stay warm, as my guts gleefully jumped at the opportunity to cramp repeatedly. Mom is out, will be back later, but there is no cell phone reception and the landline only makes local calls. Push call button: “Pain! Cold!” – response: “We know, we are working on it.” “PAIN! COLD!” “Coming soon!” From 6pm until 9pm, my pain was completely out of control. Once the fentanyl pump did arrive, they had me on the lowest dose. It took me an hour of trying to organize my thoughts while writhing in pain to tell them that I needed more, way more. By the time my mom did arrive, things had settled, and she was on a righteous warpath.

But I was hungry. My body having rejected every piece of nourishment I tried to give it, I figured that it was finally the moment to try to eat something, since my pain was no longer a problem. Wrong. Slow learner. It took two attempts at eating and two violent reactions to realize that this was not going to work. At that point, all I wanted was sleep. I was sick of being in pain, sick of vomiting, sick of that day, sick of being conscious at all. A decision was made at around 2am to up my fentanyl dose, hit me with some ativan, and call it a night. Sounded great.

6am. I open my eyes to at least fifteen faces within three feet of mine, staring at me expectantly. The room is completely packed. Everyone is calling my name. I find it frankly amusing. Who didn’t tell me there was going to be a party in here later on? What’s up, everyone? Hi! Why are you asking ME what’s going on? I have no idea! And can I please go back to sleep? Now? Cause I’m really, really sleepy. Yes, I know where I am, yes, I know my name, hi mom, why are you crying?

I had been overdosed on fentanyl. Luckily, the room into which I had been transferred was a double, but with nobody occupying the other bed, my mom had decided to spend the night to head off any further problems. With no monitoring equipment set up, it is a damn good thing she did.

[Mom says: Had I not been there he might have died. I heard a weird nonhuman wheezing or rattling sound, twice, and rolled out of bed just to check it out. Joshua’s chest muscles were tight, his eyes were staring straight ahead, pupils and mouth wide open. I called to him, yelled at him, shook him, shook him again, kept yelling while I tried to sense a pulse, realized that was stupid, panicked, pushed the call button, realized that was stupid too, called for help twice down the hall, and everyone came running. The nurse turned off the infusion pump immediately, and gave him oxygen. The nurse hugged me and took me out of the room while the doctors piled in. He was revived within a minute or two.]

Needless to say, any indignation at the treatment I had received on Sunday was dwarfed by the fury of Monday morning.

I was transferred back to the BMT unit, and all the doctors and managers are apologizing and trying to figure out what went so wrong. My pain is back under control at a much lower dose of fentanyl, and while I did spend yet another day hungry because of bureaucratic stupidity, I will be started on IV nutrition this evening, so that I won’t be trying to feed myself and cause more damage.

I spent the day taking tiny sips of very dilute fruit juice and sleeping. It was a great day.

Thursday, June 14, 2007

high dose round 2

I am sitting in the exit row, flying back across this vast country, hopefully doing this stretch for the last time. We are on our way back to Indianapolis, after an absolutely essential break in Palo Alto. It was not the break that I had imagined: I had hoped to leave it all behind, to relegate all of the unpleasantness to the time when I was “working” on things in Indiana, and to have a real vacation, unfettered by side effects. Coming from as low as I had been, though, this was of course wishful thinking. Obviously, I immensely enjoyed being home, relaxing outslde, walking around, eating (and appreciating!) wonderful food, sleeping in my own bed for as long as I wanted without being awoken by nurses or alarm clocks, seeing friends and being able to hug them, having conversations without the distracting smell of the hospital seeping out of my pores, and generally participating in the big wide world out there. But it was actually less of a vacation than a wonderful time and place to recuperate. In the grand scheme of things I surely bounced back quickly, but it has felt agonizingly slow from the inside. I spent way more time lying down than I expected. Ten days later, many of the symptoms I described last time are still present – the blotch in the middle of my visual field still makes reading slow, the neuropathy in my feet makes a short walk around the block feel like I have been running barefoot on gravel, and the combination of the dissonant tones constantly screaming in my head with the perception that everyone is only voicing 75% of the words in each sentence makes conversation require eye contact, focus, and repetition.

The prospect of even more damage being done by the next dose that I will be getting, starting tomorrow, is very scary. I know that hearing aids have gotten better over the years. I know that many of my symptoms will diminish in severity, and may even disappear entirely. For instance, my sense of taste has completely returned! But projecting in to the future, the route I had laid out for myself was ambitious enough without factoring in these and other possible handicaps, and there are moments when I can’t help but allow doubt to creep in from the dark corners of my mind. I know that lots of people go through life much more incapacitated than I will be, no matter how bad side effects from chemo get, and no matter how extreme a surgery I may have to undergo. But contemplating someone else’s disability is diffferent from thinking about my own. It turns out that not only is sympathy really not the same as empathy, but that being able to understand what it is like to be in someone else’s shoes doesn’t mean that I have figured out how to tie my own.

For some reason, this second and final round of high dose chemo with stem cell transplant is supposed to be easier to get through than the first one. Maybe it’s because there are fewer unknowns, maybe because the whole process will be a few days shorter because we have already collected enough stem cells and so don’t have to repeat that procedure, or maybe it’s simply because I know that no matter what the outcome, I will not be doing this again. In any case, despite the tone of this entry, I am heading into this feeling (relatively) strong, energetic, and optimistic. There is so much water under the bridge at this point that there is no way to see it other than just another ripple that will crest, break, and move on.

Monday, June 4, 2007


Little by little I become less bionic and more human. There are fewer and fewer glistening plastic udders dripping questionably welcome drugs into me. One by one, the tubes feeding into my port are being taken away. An amazing feat of biology has been successfully performed: my stem cells have engrafted, and my immune system has reconstituted itself from oblivion. I have one more night in the hospital, a day to pack, and then I fly home on Tuesday!

This has been a very difficult hospital stay, and I am extremely relieved to be getting out of here.

Senses are precious and delicate things. All of mine have been under attack. My ears are worse than they have ever been, to the point that I have trouble understanding my own mother. Music is muffled, and voices on movies or TV are practically unintelligible. If something comes in from the hospital food service, the nauseating smell of the institutional kitchen overwhelms the smell of the food. My feet are numb and cold, I am constantly sweating even when I don’t have a fever. My fingers are numb and feel clumsy. Everything, even water, tastes strange, if not rivolting. Just getting enough calories in is a real challenge, food service or not. My eyes… :

A few nights ago (how many? How to tell? Time slips by in a sweaty smear), I was reading before going to bed, and I noticed that I was having difficulty because there was an after-image (like after looking at a bright light) that wasn’t going away. What was eerie, and then terrifying, was that there were no bright lights in my field of vision – the reading light was behind me. With my fingers clumsy, my feet numb, and my ears screaming, I was primed to assume the worst: that the peripheral neuropathy caused by the chemo had progressed, and had begun to destroy my optic nerve. Thankfully, both intravenous anti-anxiety meds and a consult from opthamology were not too far away (there are good things about being in the hospital). After having my eyes dilated for five hours (during which time I could not only not see anything, but not even listen to music because my ears are so screwy), the opthamologist arrived and quickly diagnosed a retinal bleed. It seems that little tiny breaks in teeny vessels happen to everyone all the time, but get patched up fast enough that they don’t hemorrhage. Since my platelets were so low, when a small vessel in my eye burst, it wasn’t repaired quickly, and enough blood spilled out into the surrounding tissue that it caused a spot on my retina (right in the middle of my right eye’s visual field) to be perceptible. To my great relief and annoyance, I was told that it would go away over a few weeks. Next round, we are going to be doing even more platelet transfusions to hopefully keep this from happening again.

It is difficult to contemplate the next round, even to go so far as to say “only one more to go!”, because I really haven’t gotten over this one yet. The thought of having to do it again is sickening, at this point. I am focused on getting to sitting outside in my parents’ garden, and not much beyond.