Handling Some Heavy News

Chemo Endstage, apparently

2006-02-19T11:12:00.000-08:00

Where I left my work situation is that I started a four-week vacation this past Monday, which will carry me 1 1/2 weeks past my last scheduled chemo. I no longer feel the same confidence that my onco will take me off chemo at that point, which will make further work arrangements potentially more confusing yet, but we'll cross that when we get to it.

I am finding it harder to summon my mental processes to write coherently, and have been spending a lot of time in bed since Monday. The last two days it's been hard to nap with the temp so cold, and my appetite remains problematic, although my wife/caregiver has been doing yeomanlike duty to keep me fed and try to expand my stomach.

Her job has gotten harder in this time, and I am so grateful for her presence, love, strength, and skill at a job no one should ever have to do.

I finally got around to shaving off my hair last Wednesday. It feel good, and especially feels better than the piles of my hair in the bathroom, on my pillow, etc.

I hear from various sources that the last two chemo treatments are the worst, and leave the recipients even more ineffectual than usual, so while I hope to be able to make other coherent posts, this may be the last for awhile

Oops, check that - another bad week after all

2006-02-10T08:05:00.000-08:00

The painful spot in my abdoment that's been there in greater or lesser degree from the beginning came back fairly intensely after my last treatment (the one two weeks ago), but I didn't think too much abut it until it started to get worse over last weekend. I went to work Monday, but put in a call to my oncologist; I heard back from one of the nurses.

Monday night, I had difficulty sleeping and twinges of pain on trying to move around; Tuesday morning, I could barely get out of bed, and tried to work from home until I started noticing some little errors of judgement that could presage more serious errors.

I put in another call to my onco and heard back from her about 4; after talking to me awhile, she recommended I start using the heavy pain pills they gave me some time back, as long as they were taking care of the pain. I kept myself medicated all the way through the night, and when I woke up on Wednesday, the pain was much better. However, as the day went on, I found that I was weak and needed to take naps.

I wound up staying home the rest of the week, had to take the heavy meds yesterday, and feel that I need to have a talk with my manager about going on short term disability.

Better this time

2006-02-01T13:31:00.000-08:00

For anyone who was worried about my last entry, this current round of chemo has been a lot easier on me so far than the last was. I feel pretty much myself and back to normal emotionally; the only real problem is an extreme lack of appetite. As I type, I am at work brewing a cup of ginger tea in the hope it will make me feel like getting something substantial for lunch. Yesterday I went out and optimistically bought a turkey panini, but I only managed to choke down a couple of bites. (Of course, finding a store that sold ginger tea in the Lower Market area of San Francisco was a bit of a chore.) I'm hopeful that the ginger tea will help because I can definitely feel that my stomach is unpleasantly empty, it's just that filling it is something I have to force myself to do, and that only works so far.

Also, that same painful spot in my abdomen is back at a fairly painful level; I'm hoping it will taper off over time, but so far is showing no signs of doing so.

This appetite situation is especially annoying in light of the fact that we're having dinner with my hospital roommate and his wife tonight. He and I spent about 5 1/2 days in each other's company at a particular low spot in both our lives; we saw each other at our worst, but some of the best in each of us came through too, and I feel honored that he's chosen to stay in contact.

Tough week

2006-01-23T10:20:00.000-08:00

Last week was hard - it took me a long time to start bouncing back from the chemo (the previous Thursday), a process which is still ongoing.

Saturday, the second day after chemo and my usual "bad" (no energy, lots of naps) day, I woke up with a pain in my side in about the same place as the one that sent me to the ER initially (see "Random Odd Pains" entry). The ones I've gotten previously were characterized by pain on inhaling fully; this one was painful both on full inhale and exhale. This limited my breathing to a narrower range than I'm accustomed to. I took some pain medication later in the day, but I had the same problem I did when they gave me pain meds in the hospital - since the pain was transient (at the upper or lower ends of my breathing range), I still felt the pain acutely, and all the meds did was to dull me, not the pain so much.

On Sunday, the pain was still there, but after I woke up from a nap, I sneezed, and that seemed to relieve the pain on exhaling - almost as if the pain had been an adhesion inside my chest. A shower later helped ease the inhale pain, but a touch of it is still with me.

Another thing that happened Saturday was a muscle spasm in my biceps/triceps area. I had this happen once before, in my calf, but I didn't connect it with chemo; I've since found that others report a higher-than-normal incidence of cramps and muscle spasms while going through chemo. My chiropractor was able to fix the calf spasm, and I saw him for the elbow on Saturday; the elbow is still slightly tense, but I'm hoping it will clear itself up.

Monday was a holiday, and by the time Tuesday came, I was OK to go back to work, but was still feeling low on vitality. On Wednesday, by the time I went home, I needed to take a nap, which is very rare since I came back to work. In general, it's felt like it's taking longer than usual to get back to feeling normal.

I'm approaching the end of my chemo regimen (three more treatmens), and wonder if this is an isolated incident or a sign that the chemo is having a cumulative effect on my body. I'm afraid common sense points to the "cumulative effect" explanation; if that's the case, I can comfort myself with knowing that I see the light at the end of the tunnel (depending, of course, on what my post-chemo evaluation shows).

Vitality

2006-01-08T09:40:00.000-08:00

Each time I go in for chemotherapy, I have an appointment with the oncologist first, and one of the first questions she always asks me is "How's your energy level?"

It occurred to me the other day that there are a couple of different components to my energy level, at least as I perceive it. The first is simply gross energy, which has been admittedly short for me since before I went into the hospital (and as I've posted about before). The other is something I've come to call "vitality," and is characterized by mental energy, engagement with the world, eagerness to get out and face life.

I haven't had a chemo dose since I came to this realization, but I sort of suspect that it's my vitality that suffers when I have my bad day two days later, more than the gross energy level itself. I'll be paying attention next weekend (my next chemo is this Thursday).

Also, my vitality level has been pretty good overall. In December, I had lunch with a friend who had complained of how gloomy I was when we met in October, while I was still struggling with my symptoms and not knowing what was wrong with me. He told me I was doing much better than he thought I would be, and I'm pretty sure it was my vitality he was impressed by.

Miscellaneous update

2006-01-04T10:33:00.000-08:00

Goodness, it's been awhile since my last entry.

In the meantime, I've been working towards my goal of not having my cancer be the focus of my life. It's still pretty hard to ignore the limitations on my energy level, which seems to fluctuate with the chemo cycle, the phases of the moon, and other unknown factors. My energy level is definitely not what I'm used to, but my endurance is generally pretty good, and I haven't had any problems to this point working full days.

My facial rash has improved dramatically. For awhile there, it was dark and angry enough to make my facial hair almost invisible (actually not a hard trick, I've never been very hairy), with lots of whiteheads everywhere; I got a prescription for the antibiotic (Minicin) most recommanded for acne, and since I ran through that (it ran out about a week and a half ago), the facial rash has looked more like a rash, with the occasional pimple. For awhile there, I was using moisturizing cream on a daily basis, now I don't really bother.

To balance that out, my oncologist tells me the rash has moved into my mouth. It's not severe, but it means that hot, sour and other flavors are exaggerated, and my tongue feels like it's been mildly burned all the time. It hasn't affected my sense of taste that much, other than to make my tastes annoyingly bland.

Keeping my weight up has been a problem. I've gone down by two pounds at each of my last two chemo appointments, and tend to get full on not a lot of food. I've tried to up my carb intake by having things like milkshakes and Jamba Juice during the day to compensate.

One of the main things that comes with achieving something like normalcy has been that the novelty has worn off, and while I'm far from being over the cancer, I'm definitely Over Having Cancer. Knowing what a long haul cancer usually is, I can't let myself get too burned out on it, but keeping track of what I should be taking and when certainly palls after awhile.

My night fevers and sweats have gone down dramatically, making my oncologist happy (which makes me happy), but the cough remains an issue. My primary doctor prescribed some nose drops recently (which I then conveyed to my oncologist), to be taken once a day, and when I take them at night, I can usually get by without coedine cough syrup until about noon, after which I usually have to take some. The last couple of days have been a bit better, I'm hoping that's a trend.

One of the great joys in my life is singing, and the cough has made that difficult. I've asked a couple of sources if there might be such a thing as music therapy for cancer patients - as a singer, I know that making music releases a tremendous amount of subtle energy, and it stands to reason that there ought to be some way to make therapeutic use of that. I've sadly neglected my singing in the past several years - the last time I did any singing on a regular basis was before I left BofA in 1998. I'd seriously consider finding a regular group to sing with, even now with my energy issues, if I felt confident I could avoid coughing.

That's about all for now, more as it occurs to me...

Chemo aftermath

2005-12-19T10:18:00.000-08:00

I had my third round of chemotherapy last Wednesday, and after taking some precautions, it went pretty much as I expected:

Day 0 (day of the chemo itself):

Pretty uneventful. Some extra energy drain, a little nausea this time out (not during the administration of the drugs, but later).

Day 1:

Again, a little drained, but otherwise pretty normal, worked a full day, appetite OK. As precautionary measures, took a Compazine in the evening and an Ativan before going to bed.

Day 2:

OK when I first got up, but noticed lack of mental energy or ability to concentrate. Went back to be and slept about four hours, quiet the rest of the evening. Appetite OK.

Day 3:

Still somewhat lacking in energy, again needed a nap, but shorter. Experienced one of the more annoying side-effects I used to get when doing late-night or (especially) all-night activities for work - "anhedonia," the inability to take pleasure in anything (this was the original working title to Woody Allen's "Annie Hall").

Day 4:

More or less back to normal, although on this occasion I stayed lazy since it was raining with wind, thunder and lightning. I regretted not getting a little more exercise when I tried to go to sleep.

Since days 2, 3 and 4 pretty closely mirror what happened after my second round of chemo (although I didn't take the anti-nausea precautions the earlier time), I'm assuming this is pretty much how post-chemo will go in the future. I'm trying to adjust my schedule so I get my chemo on Thursdays, that way the bad days hit on weekends and don't interfere with work.

Patience

2005-12-15T10:43:00.000-08:00

When I was inventorying the character traits available to me from my mother and my father (see "Attitude"), I realized that patience was not something either of them posessed to any noticable degree, and if I were to acquire it, I'd have to teach it to myself. The problem with learned behaviors is that at times of stress, we tend to lose the learned behavior and revert to old habits, and it's something I have to constantly keep an eye out for.

In dealing with something like cancer, patience is both extremely difficult and extremely critical. While I was in the hospital, knowing I had some form of cancer but waiting to find out which, I was concious that every passing day the tumor cells were doing their dirty work unchecked, while those around me on the surgical floor were slowly (or quickly) healing from their hospital experiences and would be going home on the road to being well. It was difficult to keep from chafing at the unfairness and the wait.

Having been diagnosed and now on a course of treatment, patience is still the order of the day (/week/month/year?). For one thing, chemo comes but once in two weeks, and as my body adapts to (or weakens from) the repetition, my reactions change too, which makes planning a pain. My understanding is that after eight treatments (I had my third yesterday), my progress will be reevaluated, but until that time, I won't have much evidence to tell me how much the treatments are helping. I need to fuel my positive attitude with faith, and the understanding that whatever I hear at that time, it could only be worse if I let myself get into recriminations, self-pity, anxiety, and other destructive emotions.

One very positive development to report is that I got a prescription for antibiotics to ease the effects of the Tarceva rash on my face, and the rash puffiness and itchiness have definitely gone down. My wife reminded me the other day of a Dave Letterman bit from about 15 years ago, where he was trying to introduce new slogans into pop culture consciousness. This one was, "It's funny - I hate the itching, but I don't mind the swelling!"

Attitude

2005-12-12T08:26:00.000-08:00

This is a tricky one to write about, because it goes to the core of who I am.

A long time ago, I relized from reading a passage in a book ("Steppenwolf") that it might be possible to evaluate, choose and reorder the elements of your personality while maintaining your sanity. Around that same time, I spent five days helping my parents move from Houston to California, and my mother's brother was also on the trip. This gave me an ideal opportunity to observe my father, my mother, and her brother, trying to figure out and separate the personality traits they had brought to my upbringing. Over the course of the next several years, I did a lot of picking and choosing among the elements I'd observed, and became more and more the kind of person I like and want to be around - stable, understanding, observant, efficient, flexible. (I also worked at developing some traits, like patience, which neither of my parents posessed in any observable amount.)

Later, I considered the apparent contradiction that it's possible to take control of your life, but at the same time most of the circumstances of your life are beyond your control. In thinking about it, I realized that by controlling the kind of effect events have on you, and your reaction to and interaction with the rest of the world, you are in control of the experience of life you come away with. The thing that you change is your attitude.

As a believer in karma, I always try to keep my primary attitude pointed in the direction of seeking out and learning the lessons proffered by life experiences, especially unpleasant ones, on the theory that karma is going to keep repeating the lesson until I learn it, so I may as well learn it now and save myself some grief.

While I was in the hospital, particularly after I knew I had cancer but not which type, I spent a lot of time considering the attitude that would help me the most. First, I realized I had to be absolutely forward-thinking - no resenting the bad care I got from my old doctor, no trying to match up the timeline of my cancer with events in my life to identify what may have caused it. Determination to fight the disease (and if possible defeat it altogether) plus gratitude for all the days I've had so far and every day going forward were the ticket. On the purely medical side, I decided that I was a full co-equal team member with my medical staff, since they know the terrain while I know myself.

While some of the treatment side effects are annoying, and I have persistent anemia which affects my overall energy level (although not my endurance, apparently), I find that I feel better overall than I did for many weeks before going into the hospital. I still have the cough (although the night fevers and sweats are drastically reduced), but I know what's going on (more or less), and I have confidence that the situation is being addressed. Above all, I feel it's absolutely crucial that I stay myself and not let circumstances change anything fundamental about me, and I make that point whenever I share my situation with someone.

Random odd pains

2005-12-09T15:08:00.000-08:00

Last night I noticed some abdominal pain that was disconcertingly similar to the pain that sent me to the emergency room. It was in the upper right quadrant of my chest, and was noticably sharper when I took deep breaths or expelled all my breath.

This had me in a bit of a funk, especially since I didn't want to tell my wife and get her worried if it turned out to be nothing, so I was quieter than usual last night and this morning.

This morning I called my oncologist, and had a couple of messages relayed through the chief nurse at the office. It turns out that odd pains in various places is a common side effect in the early stages of cancer treatment, and nothing to worry about. More as a peace-of-mind measure than anything else, I will pick up a pain med prescription from the office tonight. But I must say I was reassured that my doctor was unconcerned about this symptom, which also puts my previous blog entry ("Fear") in a slightly different light.

Fear

2005-12-08T13:46:00.000-08:00

I've made a concious effort to live without fear for much of my life. When I received my cancer diagnosis, fear didn't play a part - I was numb for awhile, but my mind continued working, and by the time my feelings returned, I knew how I was going to approach dealing with it.

As a Buddhist, I believe that mindfulness of my own death is a healthy thing, not only to relieve fear of death, but also to use as a guidepost for right living.

Nonetheless, if I found myself hanging from a 12th-story ledge, I'm sure I'd be petrified and screaming for rescue. Just because death as a concept doesn't frighten me, I'm not immune from the fierce will to live that comes with being human.

I had my first first-hand taste of the elemental fear cancer inspires last night. A couple of nights ago, I bit my tongue moderately severely, causing swelling and soreness in one of my salivary glands that I didn't notice until yesterday morning as I slept. Last night, as I was getting ready for bed, I noticed the salivary gland soreness, and experienced a moment of panic wondering if it represented a new spread of the cancer. On the surface, the idea was ridiculous, but the shock of it was enough to invade my dreams last night.

Goals

2005-12-04T16:06:00.000-08:00

At this point, I have two main goals, one long-term and one short-term.

The long-term goal, of course, is to beat this thing - specifically to shrink the liver tumors until they're gone, then have surgery on the pancreas tumor.

The short-term goal is trickier, and adding to this blog actually sort of works against it. The goal is to get to the point where my cancer, treatment, symptoms, side effects, etc. are no longer the main focus of my life, in other words to get my life back. That one will take some patience, as it won't be until I'm able to predict how the chemo will hit me and how I'll feel that I'll be able to plan for it.

Diagnosis

2005-12-03T16:34:00.000-08:00

Someone asked me about how my cancer was diagnosed.

When I first went into the emergency room, the first procedure they put me through was an abdominal CT. After the ER doctor looked at it, he came to tell me that there were "spots" on my liver and pancreas, and that I would be admitted for a biopsy and possible other tests.

The actual biopsy was what's called a "small needle aspiration," where they insert a small needle into the tissue to be sampled (this was done by radiology, with the CT scan machine guiding the needle placement) and bring a sample of cells back to examine. I had been very nervous about this procedure, and even asked for a morphine pain shot as I went down for the biopsy; as luck would have it, radiology got backed up before I got there, and I had to go back to my room for another two hours before they could do the procedure. I don't know what the sedative they used during the biopsy was, but I have to say it was very very good; my recollections are very hazy and reminded me of the time I got ether during plastic surgery when I was about 4 or 5.

It turns out that distinguishing the origin of cancerous cells is non-trivial. They went through several days, examinations, and different staining techniques before they confirmed the pancreatic cancer diagnosis - by the time pathology got done examining the biopsy cells, they had discovered a pancreatic hormone marker in my blood tests, but they didn't want to start chemo and discharge me before getting pathology confirmation. They were even considering doing another biopsy with a larger needle to get more cells, but fortunately that didn't turn out to be necessary.

I found that my abdominal pain was worse for a couple of days after the biopsy, and hoped they wouldn't have to do an even more invasive test.

One other thing I found intriguing - the tumor they biopsied was apparently sort of target-shaped, and the cells in the middle were dead while the cells on the outside were alive and growing. They took pains to take the living cells.

Overtaxing my energy

2005-12-03T07:30:00.000-08:00

While I was in the hospital, my brother came down from Sacramento to SF to visit. For all the time I've known my wife except the last three years, he has lived a long distance away from us, and though we think the world of him, we haven't seen him nearly as much as we wanted to, even recently.

Now with this situation, he's promising to be more of a presence in the Bay Area, and we're very happy to see him. He stayed for several hours, and it was so good to talk to him I didn't notice how tired I was getting.

After he and my wife left, I found myself cranky, out of sorts, feeling like I needed to sleep but not able to, and generally unhappy with life. I realized I'd worn myself completely out during the visit. Even with a solid night's sleep, I woke up the next day feeling grumpy and completely "over" the need to be in the hospital. (Fortunately, that was also the day they moved me to the oncology floor, and I got my first chemo treatment with the promise of being discharged the next day.)

After my bad day two days ago (Thursday), I really wanted to make a good showing at work, so I went in planning to put in a full day even though I was still a little weak and shaky. I made it through six hours, got home and had a nap, but still didn't feel right, and when I found myself nodding off during the Warriors game on TV I realized I'd done it again.

I need to learn to be more sensitive to what my body needs.

Chemotherapy

2005-12-02T12:25:00.000-08:00

I'd envisioned this blog as being a lot more organized, but if I can make myself post by keeping it random, what the hey.

I had my second round of chemotherapy this week. I get two different drugs, gemcitabine and cistatin, infused intravenously every two weeks, plus a daily pill, Tarceva, which is new on the market from Genentech and just approved for lung and pancreatic cancer patients in conjunction with other therapies.

My first round of chemo was the day before I left the hospital, so I had essentially no information on how it hit my system - I spent about a week and a half just getting back on my feet and getting some semblance of energy back, and it was impossible to tell which of the effects I was feeling were chemo and which were just the result of a week in the hospital.

This Tuesday, I went in to the oncologist's offices for my second round, and I found that mine was unusually long - several other people came in, were treated and left while I was there. They told me I seemed to be doing well, although my red blood cell count was low (white cells and platelets were normal or above). After the chemo, they gave me a shot of something to stimulate the red blood cell production on a time release basis - one shot, about $2000 retail! They want me to come back for another blood draw and consult on Monday.

I had arranged with work to take Wednesday as a work-from-home day, but in truth I could have gone in - I felt fine.

Wednesday night was another matter. I started feeling a little nausea before going to bed (it's possible the order-out lasagne was not the best choice for dinner), then had to get up to go to the bathroom followed by an intense wave of nausea, and wound up getting up two or three more times and not sleeping well at all. For the first time, I took the Compazine prescribed in case of nausea (they also prescribed Atavan, which has a sedative effect as well, but I didn't take that - maybe I should have). In the morning, I felt woozy and unable to concentrate, so I went back to bed and slept until noon with very wierd dreams. I was able to put in about 3 hours of work from home before crapping out again.

One very hopeful sign was that on Wednesday, the day after chemo, my cough was almost gone, and that night, the fevers I've had at night since before going into the hospital weren't there. Also, the night sweats I've had haven't gone away, but have gotten much lighter, so I'm hopeful that the chemo is attacking whatever is causing these symptoms.

Today, Friday, I feel a lot better than yesterday, mentally acute, but a little weak; I'm going to try to make it through an 8-hour day, but won't push it if it doesn't feel right.

So, note to self - first day after chemo, maybe not so bad; second day, watch out and prepare.

Chemo works by targetting fast-growing cells, which include tumor cells, but also some good ones - in particular, hair cells, mouth lining, GI tract lining, and red and white blood cells. The particular chemo regimen I'm on is known to be pretty mild on the side effects, with little hair loss or nausea reported. Still, it's alarmingly powerful stuff to be tossing into your body, and little things like odd dreams, occasional hot flashes, and similar stuff intrudes on my consciousness occasionally.

The Tarceva has its own set of side effects - a rash on the upper body and/or face, and diarrhea. I had escaped both of these, but yesterday I noticed my nose and the creases behind my ears were itchy/sore, and this morning I saw the rash on my chest during my shower. I can only hope that gets better over time.

Later...

The Tarceva rash has spread up my neck, and many of the little sore spots on my face have erupted into a crop of pimples that would do a 14-year-old proud.

On the bright side, I did some Googling of "Tarceva rash," and found that more than one person is saying that the presence of a rash is a good indication that the drug is working. I'll choose to look at it in that light.

An introduction of sorts

2005-11-24T13:13:00.000-08:00

Since this is taking me longer than I anticipated, I thought this might be an opportunity to talk about what I'm doing here.

I was recently hospitalized after several months of not feeling well to one degree or another. During my stay, I realized that being in the hospital is something many people might be curious about, at least in part because they might wind up there one day.

Since the news I received there was life-changing in nature (inoperable cancer), my time there also occasioned reexamination of my life so far, and after I started this blog, it occurred to me that it might also be good to share some of those things in this forum as well.

The day after I got out of the hospital, I assembled a day-by-day outline of my stay, and those entries that deal specifically with the stay will be labeled "Day (x)" with the date. However, I have found transcribing the first two such entries very wearing, so that part may come along slowly.

Day 1 - Tuesday, November 8

2005-11-21T09:43:00.000-08:00

Our timing was very good - when we arrived at the emergency room, the waiting room was completely empty, and by the time Helen had parked the car and come in I was already braceleted and being processed in. In no time, I was in a hospital gown and lying on a gurney in a curtain area (where, for the next two or three hours, I endeavored with limited success to ignore the comings and goings of other patients).

After I was seen by one of the residents on duty, I was scheduled for an abdominal CT scan. One of the nurses asked if I'd ever had an IV before (ooo, scary), and set me up with one in the bend of my left elbow after I said no, then asked if I needed any pain medication, as in morphine (ooo, very scary), which I agreed to. (During my hospital stay, I received probably four or five morphine shots, and I found that while they were enough to take my mind off what I was feeling, they weren't enough to, say, restore my ability to breathe deeply without feeling stabbed in the side.)

Someone from the Transportation department put a blanket over me and wheeled my gurney into the corridor, into the elevator and on to the radiology waiting area. After checking in, he left my gurney against the wall in the hall. (This proved to be SOP - whenever I needed to go somewhere for a test, Transportation would be called (and you could usually tell when they arrived by the walkie-talkie noises). The Transportation person would have a gurney or a wheelchair, I'd get on it or in it, Transportation would take me where I was going, check in, then leave me in the hall; when the techs were ready for me, they'd wheel me in, do the test or whatever, wheel me back out in the hall, then summon Transportation to take me back. This worked very well, like a well-calibrated machine.)

The CT scanner was an immense donut, perhaps 8 feet in diameter, with a table set up to raise, lower, and traverse back and forth inside the ring. My gurney was maybe a foot higher than the scanner table, and I had to scramble from one to the other. A number of plates on a track on the inner surface of the ring began to spin around the track with a whooshing sound, as a voice cautioned me to take a deep breath (medium in my case), hold it, and stay perfectly still, as the table moved back and forth through the ring.

After the scan was over, I again had to scramble from the low table to the high gurney, and this proved to be the most painful moment of my whole stay.

My gurney was put back in the hall, and Transportation returned me to my curtain area in the ER, where my wife and I addressed the problem of letting my work know I would not be in that day, and likely for some time to come.

After I'd been back for awhile, the doctor came back in to tell me the CT had showed some spots on my liver and one on my pancreas, that a liver biopsy was likely next on the agenda, and that they were in the process of admitting me to the hospital and finding me a room. While he pointed out that the spots could be abcesses or infections, and I held on to that possiblilty tightly, deep down I basically knew what the score was from that point.

Before too long I heard that they had a room for me. Unlike when my wife had been hospitalized several years ago at a different hospital, she was able to come with me up to the floor, where they got me off my gurney and installed in a hospital bed. The room was so small it didn't look like two beds, their occupants, bedside tables, possessions, visitors, etc. could co-exist, but there was just enough room to make it work (albeit with some jockeying, bumping and apologizing from time to time). They showed me all the controls (on the bed, seperate up/down for head and foot and nurse call, all on the side rails, and I spent most of my time with my feet slightly wedged against the bottom rail, me being 6'1" tall; another remote on a cord with the TV controls, controls for the lights (upper and lower tubes on the horizontal fixture on the wall behind), and another nurse call), then the nurse assigned to me introduced herself. On the wall opposite the two beds were whiteboards, with policy calling for each to identify the current date, current shift, currently assigned nurse (each patient had an assigned nurse, sometimes not the same for both roommates), patient's primary doctor, diet, upcoming tests/ongoing instructions, and discharge date.

Once I was installed and resting comfortably, Helen headed home after noting my room number and phone number, and I caught a snooze as best I could. I found that in the hospital, sleeping is the best strategy for passing time, but it's not entirely easy, since nurses or assistants are always coming through taking temperature, blood pressure and blood oxygen level readings, doctors and nurses are coming in to visit one or the other occupant, and (unless the room door is closed) the bustle of activity at the nurses' station is always there.

In the afternoon, I was visited first by a floor resident, later by an attending (senior) doctor. I was told that my liver biopsy was scheduled for the next morning. They discussed various forms of cancer with me; since my blood tests were showing anemia and there was a family history, they were initially leaning toward a colon cancer diagnosis, and they performed a test for blood in the stool (basically just a minor rectal exam). Other possibilities were discussed, but they basically told me we'd have to wait for test results to have any kind of idea what was going on.

The nursing staff would ask me my pain level, 1-10, every time they took vital stats, and reminded me that pain medication was available.

In the evening, I was surprised to hear that Transportation had a wheelchair waiting to take me down for a chest X-ray, especially since my previous doctor and current doctor had both had these taken. This was the only test I was ever taken to in a wheelchair instead of on a gurney, possibly because the X-ray required that I stand.

Day 0 - Monday, November 7

2005-11-18T08:49:00.000-08:00

For several months, things hadn't been right. I had a persistent cough, sporadic (but increasing) fevers, more and more frequent night sweats that left the sheets soaked, I'd lost 15 - 20 pounds, and wasn't feeling my normal positive self.

My primary doctor had been blowing me off, making it clear that someone who refused to just get over it already wasn't worth his attention, and I had finally bit the bullet at the end of October and switched to the doctor my wife had switched to a month or two before (when she got fed up with this joker). I'd been to one appointment with the new doctor, and she'd ordered blood tests (which the old one couldn't be bothered with), a chest X-ray (the only test the old doctor *did* order), and a pulmonary function test (lung capacity, etc.), and seemed very compassionate and concerned that my condition be resolved. This had been the previous Wednesday.

On Monday morning, as I was getting ready for work, the cough was a little worse, and when I got in, I felt feverish and slow-moving. I put in a call to my doctor.

She called me back in the afternoon, told me my results had just came back and were causing her some concern, particularly a result showing I was anemic. She wanted me to come into her office for more tests. I asked if she provided flu shots, but she said she thought I was too sick to be thinking about taking one. This was both gratifying and a little alarming.

I bought a Jamba Juice shortly before going home, and as I was leaving work, I felt what seemed like a stitch in my right side, severe enough to make it difficult to stand up straight, which I attributed to the cold drink. I had my iPod with me, and for some unknown but providential reason, I decided to listen to Miles Davis's "In a Silent Way" on the way home.

By the time I got home, the pain had increased to the point where it was interfering with taking full, deep breaths, and then started turning into shooting pains on motion. I was able to get a little relief using a heating pad on my ribs, but the relief didn't last after the pad came off.

By the time I went to bed, the only way I was able to get any sleep at all was to take a coediene pill, and at that I could only get about two hours by lying on my left side absolutely still. I tried lying on my right side on the heating pad, but every time I would start to drop off, I would inadvertently take a slightly too-deep breath and wake myself up. Around 3:30 AM, I decided I'd had enough and called my doctor's 24-hour advice nurse line, an automated phone tree system collecting data to hand off to a live person who would then call back. This was a little bit of an ordeal, as the recording was low-volume and a little hard to hear, and instead of asking for one data item at a time (name, phone number, complaint, etc.), the recording asked for two at a time. At one point, I got so confused I had to hang up and start again.

The night nurse called back quickly, probably with 15-20 min., and told me that severe pain unimproved after almost 12 hours definitely warranted a trip to the emergency room.

I got dressed, wincing occasionally, and noticed I had low blood sugar. As my wife Helen was getting ready to drive me, I asked if we had anything "snacky" lying around, and she resourcefully spread peanut butter on two saltines while I grabbed a Squirt from the refrigerator. This would prove to be the last food I would have for two days.

As we drove to the hospital, I reflected on how fortunate I was that all this had waited to come down until I switched doctors.