Today's pic

This is how I look today. I snapped this while waiting for breakfast at the local diner.

I try to keep a pleasant countenance. But I look in the mirror, and it seems as if I've aged 10 years in 10 months.

I weigh about 208 now, and am gaining weight, which is what the doctor wants.

Random thought

When my cat, M. Gaston, was still a kitten, my Basset hound, Bailey, adopted him as her own. She would gently pick him up in her mouth and carry him like a puppy; when he would try to wander off, she would get in front of him, bark urgently, and herd him back to a spot where she could keep her eye on him.

The Tao is a river wide as the universe, and as small as a tear trickling down your cheek. The millions of galaxies cannot fill it, but it will fit in the palm of your hand.

It was right in front of me all along, but it took me 55 years to discover it.

Look at it, and you will see it. Look for it, and you won't.

The results

The CT scan from Nov. 16 shows that my tumors have not shrunk further, and may have in fact grown about a millimeter. My oncologist says this is within the margin of error for a CT scan and may be indicative of nothing.

We changed my chemo treatment two sessions back because of neuropathy (numbness) in my left hand and tongue. This may be permanent or it may clear up in a few months.

The news could certainly have been better.

On the good side, my liver function and red cell count remain completely normal. My doctor reiterated that going by lab tests, it appears I have no cancer, and that I'm not getting any chemo. He even went so far as to double-check with the lab to make sure they're been giving me the right stuff. They are.

I have had sixteen chemo cycles now.

Another update

They've changed my chemo medication. The active ingredient is still 5FU, but some of the other stuff is different. Short version: more nausea, less of other side effects.

I've lost a significant amount of feeling in my left hand. This was caused by my previous chemotherapy cocktail. I also have some numbness in my tongue and my right hand. The doctor says this may clear up, or it may not.

I had a CT scan today – my third (I think) since being diagnosed with cancer. I'll find out the results a week from Monday.

An update

It's been roughly six weeks since my last blog post. I have now done 14 chemo cycles. Some long term side effects are now manifesting themselves. Back in September, I mentioned occasional tingling in my fingertips. The tips of some of my fingers, as well as the tip of my tongue, are growing numb. This may or may not clear up next spring or summer.

I had to skip chemo this week. My white cell count had dropped too low to safely receive treatment. This is the second time it's happened, and that's pretty damn good after 14 cycles. I know people who had it happen on the first cycle. Frankly, I'm grateful for the extra week off. I almost called the hospital Monday and told them that mentally, I just wasn't up to it. But I decided to fgo ion anyway, and my white blood cells got me the vacation I needed.

I took a spill in a restaurant parking lot the other day. One of knees just buckled as I was walking. I fell and landed hard on the knee that gave way. I've got a huge scab on it, but no swelling or other evidence of damage.

I've had this situation with my knees buckling for a while now. I sometimes walk with a cane to help catch myself if one knee or the other suddenly folds. I didn't have it with me when I fell in the parking lot.

My oncologist's assistant has suggested I may need physical therapy to strengthen my knees. They make machines that do that. I used to use one when I was doing weights (about 110 years ago).

My weight is fluctuating between 203 and 206 these days – downtown from a pre-surgery weight of about 240 and an all-time high of about 260. But there's quite a bit of flab here; I'm not in danger of wasting away just yet.

Colostomy bags are Buddhist

Who I am

One of the things I've discovered about being a cancer patient is that it becomes your identity: mcarp, cancer patient. When you're in chemo, chemo is the dominant factor in your life. Everything else revolves around it.

I mentioned in yesterday's post that I sometimes go for days without bathing. Part of the reason for this is that the mere act of taking a shower is so physically draining I have to sit or lie down for twenty minutes afterward. Anything that involves more than two or three minutes of activity is going to require a rest period afterward.

I've had a bit of normalcy during my three-week 'chemo vacation', but only a bit.

As I've mentioned before, I take chemo on alternating Mondays, with a portable pump that continues to drip 5FU into my system for 48 hours afterward. Then I remain sick with various side effects for days.

When I first started chemo, I got five 'good days' between my every-other-week fill-ups. Then it dropped to four days, then three. Now I have no good days. I remain nauseated the whole time. Sensitive to cold the whole time. Fatigued the whole time. Having intermittent tingling of the fingers and toes the whole time. (The tingling is the part that seems to most concern my oncologist; the chemo I'm receiving can cause permanent numbness and nerve damage in the extremities.)

I was pretty much a slob before I got sick. Now, I'm even worse. But I don't have the energy to be otherwise.

Chemo update: shrinking tumors, deteriorating mind

I'm past due for another update.

I have completed 11 of 12 scheduled chemotherapy cycles. The doctor had to delay the twelfth because my immune system is finally so shot I can't handle another dose. I've taken three weeks off from chemo, and I'll go back in next Monday to see if I'm in good enough shape to resume. If so, they'll hook me up for the twelfth dose then.

I had a third CT scan at the end of July. Good news: the chemo is working. I'm a little confused by what the oncologist told me, but either one or two of the tumors on my liver have disappeared. The largest one has shrunk significantly, and another has shrunk as well.

Here's where I'm confused. The first scan revealed three tumors, and the second confirmed that. The third scan shows either one or two tumors, and I didn't get the inconsistency until after I left the doctor's office. In any event, I'm making progress against a disease that at this point in my treatment has already killed about a third of the people who get it.

Again, complete recovery from Stage IV colon cancer is almost unheard of. It's a fraction of a percent of all cases. I'm not expecting complete recovery, only to buy as much time as I can get for myself before it kills me. That could be years from now, and I hope it is.

But in other respects, things are not going well. Even I can see the deterioration in my mental and emotional state. I spend day after day holed up in my house, seeing nobody. I sleep in the clothes I wear. I sometimes go for days without bathing.

If you've seen The Lazy Song alternate video by Bruno Mars — the one featuring Leonard Nimoy — it's quite similar to the way I live my life. Except for the bathrobe.

 

The house looks as bad as it's ever looked. In some respects, it's worse. There are styrofoam cups from Braum's everywhere. I've been living on milk shakes for weeks now, because they're one of the few things that still have any taste. Of course, foam beverage cups are huge space consumers, in or out of the trash can. And they're everywhere in here.

Before I learned that my tumors were vanishing, I had been psychologically preparing myself for imminent death. I knew I would make it through the end of the year, and probably next year as well. But after that, things seemed bleak, and I was training myself to not care. And it was working.

The house is full of fruit flies, by the way. They're everywhere. 

Another update

Guess it's time for an update. I have completed nine chemotherapy sessions. They warned me the effects would be cumulative, and indeed they are.

I rarely get out of bed during chemo weeks now. I have been able to drive myself to the hospital for the Monday infusions, but during the eighth session, I got so sick while I was still at the hospital, I had to call a friend to drive me home. She brought another friend to drive my car, and I got home OK.

I think I have mentioned this before, but my chemo session every other Monday involves about three hours in the infusion center. They load me up with close to a half gallon of various IV drugs. Then they attach a portable pump to me, which drips 5FU into my system for 48 hours. And when that's over, I'm completely hammered. I can't drive. In fact, at this point, I can barely walk when the 5FU is done. It gets worse every session. But I have to go back to the hospital to have the pump disconnected. I thought I was going to need a wheelchair last Wednesday. I made it out of the hospital under my own power, but just barely.

Nausea is still a problem. I've been through a couple of different medications. They all work a little, but nothing is completely effective. So I throw up a lot. At least it gets me out of bed.

Chemo is going to cost in the mid-six figures. Insurance will cover almost all of that, but it looks like my co-pay for each sessions is going to be about $600, which means the whole thing will cost me about $7200 out of pocket. My total out-of-pocket expenses are going to be in the range of $40,000 - $50,000. I've already paid most of that.

Do not try to send me money. I don't need it. I can cover this myself, and I'm very grateful I can. But these dollar figures should give you some idea, if you don't already know, how a catastrophic illness can destroy a family financially.

The Halfway Point

I'm at the halfway point in chemotherapy – six sessions. My tumors have shrunk, but not by half. My oncologist tells me the shrinking often accelerates later in the chemo.

I usually go in for treatment every other week, but I took two weeks off this time because I needed to see another doctor to sort out some insurance issues.

I really enjoyed having an extra chemo-free week. Drank a lot of milk shakes, ate a lot of ice cream. Sensitivity to cold returns Monday, so I'm enjoying it while I can.

Fatigue is still a problem. I wore myself out Wednesday carrying a medium-sized bag of dog food into the house, and had to lie down and rest. I can't even think about picking up the big food bags anymore.

This may all return to normal when I'm done with the chemo, which I guess will be in September.

Still, it's kind of nice to have a legitimate medical reason for being a slacker.

Back to the Very Dark Room

I feel like I want to talk a little more about fatigue. It's really wearing me down. I took a shower this evening, for reasons that will be evident after you've read the post preceding this one. When I was done, my hands and my knees were trembling so badly I thought I was going to have to just lie down on the bathroom floor to recuperate. It doesn't take much to tire me.

I've spent 50 of the last 72 hours in bed. I usually feel mentally alert, but my body simply doesn't want to do the things that I want it to do. My body feels like a 220-pound deadweight that my brain has to carry around, and try to cajole into even modest action.

A few years ago, I put blackout curtains on my bedroom windows and turned that room into what I called the Very Dark Room. I spent the whole summer in there, in quiet solitude, with nothing but the music of Tibetan singing bowls in my ears. My friends scarcely saw me that summer. I just sat there and recharged my batteries, week after week. It felt calm, safe, peaceful and steady. I feel that I'm ready to do that again. I need it more now than I did then.

Catastrophic failure

So, tonight I had my first catastrophic colostomy bag failure. Fortunately I was at home at the time, and I was able to get myself, my clothes and the bag into the bathtub with no collateral damage.

I knew this would happen eventually, of course, so I wasn't totally unprepared.

14 Years

I heard a story this week about a friend of a friend. She was diagnosed with colon cancer, same as me. She was stage IV, same as me. She had a colostomy, same as me.

And I assume that, same as me, the doctors gave her about 18 months to live. But 14 years later, she's still with us.

That's the kind of story I like to hear.

Bag farts

Note: this post will cross many readers' TMI threshold. Continue reading at your own risk.

As I've mentioned previously, my cancer treatment included a colostomy. That's the procedure where they remove part of your colon, then attach what's left to a hole they've opened in the wall of your abdomen, because what's left isn't long enough to reach your ass. You eliminate waste through this hole, or stoma, into a bag attached to your skin with adhesive. The process goes 24/7; you no longer have any control over when you shit.

But even more curious is that after the procedure, you still fart.

I am more intimately acquainted with my farting now than I ever was before the surgery. I know that by volume, I fart far more than I shit. When I fart, my colostomy bag suddenly expands like a puffer fish.

When I was in the hospital recovering from my surgery, the nurses showed me how to 'burp' my bag. But it's something you definitely want to do in a well-ventilated space.

Like a national park, maybe.

Because for some reason, bag farts smell worse than normal free range farts. 'Way worse. I mean a couple of orders of magnitude worse.

Even after my chemo is done, I will still be bagging it. That will be for the rest of my life. Sometimes these are reversible, but not in my case. Too much was cut out.

If I was still thirty years old, I'd be really distraught about this, I think. But at this stage in my life, it's not as big a deal.

Clearing the cobwebs

I decided to go for a longish drive yesterday – longish, at least, by my standards. Once around the lake, then out into the far northwest corner of the city, then back home again. It was cloudy and 64. I didn't need my sunglasses, and I could open the sunroof glass and let some fresh air in.

Let's roll.

Although I generally don't wander far from the house in my errands, I do occasionally like to go for a thirty- or forty-mile meandering drive with no destination in mind. It gives me a chance to sweep the cobwebs out of my brain.

And when there are only three or four days every two weeks in which I feel like doing something other than sleeping and barfing, it seems wise to make use of them somehow.

It was also one of those occasions that I felt would have been improved by having a significant other with which to share it. But I've never known a woman who liked to just go on long drives with no other purpose than to drive. My wife would tolerate them, but that was as far as it went.

With other women, it was always, “Let's go to the mall,” or, “Can we run one or two or a half dozen errands while we're out?” or, “Let's go get mimosas,” or, “Let's go meet this other guy I like so I can try to provoke you two to fight over me,” or, when I still drove the minivan all the time, “I can't be seen in that.”

I've loved all the fantasy relationships I never actually had. The real ones, well, not so much.

No taste at all

Another chemo note: I had been warned going into this that food might acquire a metallic taste. But that didn't happen.

What did happen is that food started to have no taste at all. A lot of my meals taste like cardboard and cotton ball sandwiches with a side order of foam packing peanuts.

The things that seem most edible to me are fresh fruit, especially watermelon, plums and citrus; and, oddly enough, Wendy's chili.

A doctor friend says tastebuds have a high cellular turnover rate and thus are greatly affected by chemo.

A new look

This needs more work. But since I blew up the template that I had been using for seven years, I had to do something.

Anticipate further changes soon.

A new look?

It's been years since I updated the look of this blog. Blogger has a slew of design features that have been added since then, and I'm not using any of them. On the one hand, I'd like to do something new, but on the other hand, I'm comfortable with what I've got.

Update: Ooops. Looks like I just blew up my template. It was supposed to be saved, but apparently it wasn't. That should encourage some change. Change is good.

Mind and body

Even though it's contrary to Buddhist teaching, I have always instinctively thought of myself as separate and apart from everything and everyone else.

I have also always thought of my body as just a tool my brain uses – and in my case, a tool that wasn't always as effective as it might be. As I think I've written before, I'm a big guy, and someone who just met me might naturally assume I had been a football or basketball player at either the high school or collegiate level. But in fact, I am decidedly nonathletic. I'm clumsy and graceless. I'm sloth like in my movements. I have always tired easily, even as a child. I remember a couple of instances in childhood where I almost blacked out just running around and playing with my friends.

For me, my own right hand seems as alien as the pen or fork or hammer as it's holding.

I mention this because until recently, I just assumed that everyone thought the same way about their bodies: tools being used by brains. It had never occurred to me that athletes, dancers, yoga instructors and others may not think that way about their bodies at all. They may see their minds and bodies as a single entity. Perhaps that's the reason they are athletes, dancers and yoga instructors.

Well, that's just what I'm thinking. I don't know if it's true.

A certain attachment to not throwing up

When I first became interested in eastern philosophy, I wasn't looking for 'big E' enlightenment. More than anything else, I guess, I was trying to score points with Ms W&E.

But what I found was the first philosophy of life I had encountered that seemed consistent with my own understanding of reality. I remember reading Wenzi with tears streaming down my face, realizing that at one time in the ancient past, millions of people saw the world the same way I see it now.

But I also realized that this was a philosophy that worked very well with the comfortable life I was leading at the time. I had quit working, except for a handful of freelance clients. I got up when I wanted to get up, and went to bed when I wanted to go to bed. I came and went as I pleased. My life of neither being nor not being was rather idyllic, and presented few significant challenges. Actually, it presented no significant challenges.

Then, suddenly, a challenge.

Now, after just four months of treatment, I find myself nostalgic for the days before I knew I had cancer.

I've mentioned this before, but my body is actually handling the chemotherapy quite well. My four tumors have shrunk slightly after four treatments.

My CEA has dropped to a measly 2.5, within the range for persons with no cancer.

My white cell and hemoglobin counts are within normal range; my red cell count is actually increasing. This means my immune system is still functioning properly, and I'm not in immediate danger of dying, as Robin Gibb apparently did, of an illness indirectly caused by cancer treatment.

But two things are wearing me down. One is constant fatigue. I've always been rather low-energy, but now I spend entire days in my recliner watching TV.

The other thing is nausea. This isn't nausea like you get from food poisoning or some other illness. I don't know how to describe it. I have this vague, very low-level nausea a lot of time, and it suddenly escalates to irreversible upchucking in a matter of 2-3 seconds. And yes, I take something for it, and it helps, but it's not 100% effective.

There are some foods I literally cannot think about without getting queasy. Pictures of burgers on TV commercials can trigger it. I dashed out of a restaurant and barfed on its front porch the other day. I barely got out the front door in time. I have no idea what set it off – maybe an odor of cooking food.

So, there's that, along with the fatigue.

I have a certain attachment, as it turns out, to not throwing up. Also to being able to take a shower or walk to the mailbox and back without having to lie down for 15 minutes. But in the present moment, that is not my life. It is not who I am. And the present moment is where I live. But my philosophy is now being put to the test.

Some things finally become clear

I've probably posted two hundred items since 2005 about my lousy love life. I keep thinking I am done posting about it, especially now. But a new insight is occasionally gained, and I feel led to share it.

If you've read the previous posts on this topic, you know that I'm almost sixty and still waiting for a willowy, ethereal hippie chick type who physically resembles Stevie Nicks circa 1975 and who embodies the character traits of Quan Yin, the east Asian bodhisattva of compassion.

Needless to say, I never met anyone like that. And the ones who came close were looking for someone a little more interesting and entertaining than me.

But looking back on it, I see now that I wasn't looking for a relationship. I never had the emotional energy for that, as women who've actually had relationships with me can attest.

All I was looking for someone who could soothe the pain of my depression when I was feeling it. And when I wasn't depressed, I was perfectly content being alone, and didn't want Stevie Nicks/Quan Yin to be around at all.

I was totally focused on my emotional needs as I perceived them. Her emotional needs? My fantasy woman wouldn't have any, except to make me feel better. That was all I wanted.

And although I understand it now, I can't say it's changed my attitude. It's still self-centered and unrealistic, but it's still what I want.

And, of course, will never have.

Cancer update

Time for an update, I suppose.

I am now three sessions into chemotherapy. I have, probably, three more to go before a CT scan to determine if the chemo has had any effect on the tumors.

My chemo regimen consists of three and a half hours in the infusion center every other Monday, followed by 48 hours with a take-home pump.

The infusion center is a large room filled with big, comfortable recliners, staffed by oncology nurses. Every other Monday, staff 'bartenders' prepare the mix of chemicals I receive, ranging from vitamins to steroids to actual chemotherapy drugs. I settle into one of the big chairs with my iPad, and the nurses feed me one bag after another, intravenously.

But it's the take-home pump, if I understand correctly, that carries the main event: fluorouracil, which has been the treatment of choice for colon cancer for fifty years.

I wear the pump until Wednesday. And by Wednesday, I feel like hammered shit, which continues until the weekend. I sleep, I throw up, I watch TV, and that's about all the activity for which I am able to muster any energy.

The first week was bad, the second week not as bad, and the third week somewhere in between weeks one and two.

And none of it has been as bad as the recovery after the surgery.

On paper, I look great. My blood counts are within normal range, and actually improved between weeks two and three. My immune system thus far seems to be holding up well.

I spent a few weeks obsessing about what seemed like my certain impending death, and I have gotten past that. I still think about it, but not like I used to. That's partly because my current oncologist seems much more optimistic about my situation than did his predecessor.

I think the cat just peed down the air conditioning vent, so I'm going to sign off for now.

Another update

Sleep has improved dramatically over the past five days, and I'm back to roughly the same sleep pattern I had before the surgery – which means I'm still up a lot during the night.

Chemotherapy was supposed to start today, but has been delayed until Monday because of a scheduling problem at the hospital.

I've had some confusion and false starts with oncologists. My first oncologist turned out to be out-of-network for my insurance. My surgeon found me a new one, and I'll tell you I really like the guy. He's the first MD I've seen during all this who hasn't talked as if the end of my story is a foregone conclusion.

I cracked the screen on my iPad, so I bought an iPad 3. This isn't necessarily a wise expenditure, given my current situation. But if I'm going to spend three hours a week in the chair at the infusion center, I wants something to pass the time. I've downloaded some shows from PBS to watch: episodes of NOVA, The American Experience and the John Adams miniseries. Those should keep me occupied.

An update

It's been almost a month since I updated. Here's what's been happening.

I got home from the hospital, and my recovery seemed to be moving along briskly. Within a few days, I was up walking around the neighborhood, driving to the coffee shop, and going for short trips to the grocery store.

Then, I had a setback. The painkiller I was taking started making me groggy. My incision became infected, and the surgeon prescribed a sulfa-based antibiotic that nauseated me and made me throw up twice or three times a day. I started having strange hot flashes that felt like I was running a fever of 102° or so, even though the thermometer showed I had no fever at all.

Eventually, I was in bed most or all of the day. Couldn't drive, couldn't make it to the coffee shop. Fortunately, friends came by to check on me and keep me company during all this. My friend Cindy came and sat with me for a couple of hours one evening, even though I was too zoned out to even carry on a conversation. My friend Rena stayed over one night when I was at my nadir.

Then my surgeon took me off the painkiller and the antibiotic, and I started feeling better again the next day. The hot flashes, he told me, were caused by dehydration. At his suggestion, a knocked back about a half gallon of Gatorade over the course of the day, and the hot flashes ended.

Now, I'm back up and around, although I tire easily and I'm good for about a half day of activity at most. I also have not slept well since leaving the hospital. I had a pretty good night last night, sleeping maybe six hours, but most nights I sleep three or four hours at most.

More to come.

An Outpouring of Support

So, I'm home recovering from the first major surgery of my life. I am now an ostomate, a person who has undergone surgery to create a new body orifice for the discharge of wastes. In other words, I now shit through my stomach.

If I were still thirty years old, I guess this would be a horrific experience for me. At age 59, with a mostly sedentary lifestyle, it's not that big a deal. Cleanup is gag-inducing, but perhaps I'll get used to it with time.

The most remarkable thing about this experience is the outpouring of support I've received. My coffee shop family has kept me fed, run errands for me, spent evenings with me to keep from being depressed and lonely, and generally gone far above and beyond the call of duty.

In addition, my friend and former boss at the city, Karen, has gotten me to the hospital, helped me keep track of paperwork. Her husband has run errands to the pharmacy for me.

Old TV colleagues, many of whom I had not seen in decades, have come to visit.

I should also say something here about Facebook. Love it or hate it, Facebook was the key medium in getting word out to others about my situation.

An update

Well, a lot has happened since my last post. Colostomy surgery on Feb. 10, followed by four days in the hospital. I'm back home now, trying to minimize my intake of Percocet. I have a lot I want to say about this, very little of it medical in nature. But I'm in bed, trying to blog with my iPad, and I think I'll wait until later to write more comprehensively.

Frightened?

A couple of people have asked me if I'm frightened. The answer is, no, I don't think I am. I'm disappointed, frustrated, annoyed and occasionally depressed – but not frightened. Maybe I will be later.

Oncologist

I met my oncologist yesterday. He believes my prospects are somewhat better than those presented by my surgeon. I hope he's right. But he said only about ten percent of patients in my condition make it to five years.

Surgery tomorrow. Lots to do today. This is like getting ready for a European vacation, only with laxatives.

Truly blessed

I had a lot to do today. Bought new linens for the back bedroom, along with an electric slow cooker and some pots and pans. Visited with a lawyer about estate planning and other stuff related to my illness. Had new front door keys cut to give to friends who'll be checking on me after surgery. Installed (gopod help me) Windows 7 on my Mac, along with VMWare Fusion, so I can access a single state gov't web site that's still using ten-year-old proprietary ASP widgets that work only with Internet Explorer.

Because I was so busy, I didn't have time to brood or obsess. And tonight, I feel as if I'm tired enough that I might sleep all the way through.

To add to my previous post... Quan Yin has in fact manifested herself in my life, if you can believe in such things. Maybe she isn't sitting right at my bedside, but her compassion is reflected in the supportive emails and offers of help I've received from many, many friends.

I've been truly blessed in this regard.

During these darkest hours

My biggest struggle right now is keeping depression and despair at bay. My depression has always run in a 24-hour cycle, getting suddenly worse at sunset and growing deeper as the night goes on. A couple of friends have put themselves at my disposal at this hour, so I'll have someone to talk to, but I haven't done that, yet. It's important that I not wear my friends down with my neediness. I've been on the receiving end of that, and I know that a person in even the direst of straits can drive friends away by placing constant demands on their time, patience and emotional reserves.

I seem to have two kinds of depression. One is the daily depression that sometimes feels like an old, comfortable blanket. It's been with me my whole life. Although it causes me to avoid friends and put off things that need to be done, I often sort of wrap myself up in it and settle into it.

The other depression is like a short, dark, ugly creature that opens its mouth into an impossibly wide chasm, cold and black, into which I feel I might helplessly fall, tumbling down, down, darker and darker, until there's no light left at all. The last time I felt this depression was in 1998-1999, when my whole life suddenly fell apart. I survived that, but in that case, cells of my body weren't actively trying to kill me.

It has become very important to not be alone. I try to spend time with someone every evening before I go home to bed. I have come to fear solitude because I know that when I'm alone, the creature will come tiptoeing out of the long shadows of the night and open its gaping mouth, waiting for me to fall into it.

In my fantasy, Quan Yin comes and sits at the edge of my bed, keeping me company and keeping the creature at bay. But I wish Quan Yin would manifest herself as a real person to be at my side during these darkest hours. As Paul Medina pointed out in a comment to an earlier post, I eventually have to finish this journey alone. Until that time comes, though, I wish she was here.

The simple truth

I thought I had done a rather good job over the past few years of cultivating mindfulness and being in the present moment. But I can tell you that nothing brings you into the moment like knowing you may die soon.

I've developed a new awareness and appreciation of all sorts of little things that I had previously only scarcely noticed. When I scratch the cat's ears, I notice how his fur feels between my fingertips. When I'm outdoors, colors seem more vivid and saturated. When it's not cloudy, the sun seems brighter. When someone says to me, "good morning," it seems more sincere. I had read that these things sometimes happen, but I thought the authors were speaking figuratively. They weren't.

I've written in the past about how boring many other people find my life to be, lacking passion, drama and excitement. But over the past few days, I've noticed something almost every hour that makes me think, "I don't want to lose this."

Yes, that's attachment. Attachment to small, simple pleasures, but attachment all the same.

I'm trying to be very broad-minded, equanimous and Buddhist-y about this. But the simple truth, when I look at myself honestly, is this: I don't want to die.

I don't want to die.

I don't want to die.

I don't want to die.

The latest

The doctor has told me that my cancer is incurable.

I'll go in Friday for removal of part of my bowel and colon. Chemotherapy will follow.

The median survival time following this surgery is 18 months, although some patients live up to 5 years. Without the surgery, the doctor told me, most patients live eight to ten months.

Perhaps more importantly, the surgery will save me from enduring a lot of severe pain whenever the end does come.

And that's as much as I know.

Yesterday's events, and tomorrow's

Yesterday I went in for the needle biopsy on my liver. I was in the hospital most of the day, and was finally released about 4 pm.

I have a meeting with my doctor tomorrow to discuss the next step.

I was with my father 10 years ago when he had this meeting regarding his pancreatic cancer. In that case, the doctor told him that his situation was simply hopeless, and that he should go home and put his affairs in order.

That has been weighing very much on my mind the past 48 hours. Of course, my cancer is different, and my overall health is much better than his was.

Coffee get-togethers

Many of you have expressed a desire to meet me for coffee or breakfast. I really want to do that, but my energy level seems to fluctuate significantly day-to-day, and I never know how it's going to be. It even changes from hour to hour. Yesterday, for example, was a rather normal day. But the day before, I went home and back to bed immediately after breakfast because I felt so fatigued.

Of course, my energy level has been spotty all my adult life, but it's more unpredictable now than ever.

I'm reluctant to schedule coffee get-togethers because I'm afraid I'll bottom out twenty minutes before I'm supposed to be there and have to cancel.

I try to drop by The Red Cup most mornings after breakfast, but even that is not a sure thing.

You'll see me out and about with Diane Coady from time to time because Diane has been willing and able to adjust her schedule to whatever I'm able to do during any given part of a day, usually with little or no notice.

I hope I'll have at least a little more get-up-and-go soon.

Thank you again for your support and interest.

What's Next

I let some info slip through the cracks in the process of moving my updates from Facebook to here.

So here's what's next. On February 1, I go back into the hospital for a needle biopsy of my liver. There is a very slim chance – like about 1% – that the shadows on the CT scan of my liver are something other than the cancer. The biopsy will confirm that one way or the other. This is about a six-hour procedure.

After that, but I don't when, radiation for my ass tumor, followed by surgery to remove part of my colon and I don't know what else. They'll also be moving my ass around to my stomach, since my existing ass is pretty much FUBAR. After that, chemo to attack the cancer in my liver – assuming that is, indeed, cancer.

And that's all I know.

Sunday morning part 2

I went to Jimmy's Egg for breakfast. Planned to visit the Red Cup afterward, but I was too tired. I came back home. This happened even before I became ill, so I'm not surprised. I'll sleep an hour or two, and then I'll feel better.

Sunday morning

I turned down a movie invitation last night because I didn't feel like I had the energy for it. I slept/dozed until about 11 pm, then got up for about an hour. Then I went back to bed.

Can't decide what to do this morning. I need to eat, but I don't want to leave the house.

Rollo the cat is here, hanging close by, and I'm grateful for his company.

iTunes

I've turned iTunes back on after a layoff of a few months. I've got a lot of calm, relaxing music on it. And lord knows I could use it right now.

You can see what's recently played on the last.fm widget at right.

Back Under the Covers

Went to dinner with Diane, and by the time we were done, I was almost too tired to drive home. It's now about 6:20 pm, and I'm back under the covers, ready to sleep.

In Spite of a Good Night's Sleep...

In spite of a good night's sleep, I've been pretty wiped out today. Got to Jimmy's Egg about 9 am, and the Red Cup about 10. Got home at probably 10:45 am, and slept/dozed on the sofa for about two hours.

I still don't especially like being holed up here by myself. But I don't know what else to do. I don't have the energy for the crowd at the coffee shop. I'm still an introvert, and I have largely lived a hermit's life these past few years. It's hard for me to adapt to anything else. Sleeping on Suzanne's den sofa last night, with her and John in the next room, was just the amount of human contact I needed at that moment.

I've come to rely heavily on a handful of friends, but they still have their own lives to tend to, and they can't drop everything to wait on me hand and foot.

My right knee buckled once while I was getting dressed this morning. I didn't fall or hurt myself. It just felt like my body was refusing to do what I wanted it to do. I picked up a glass of orange juice at Jimmy's Egg, and it almost slipped through my fingers.

I don't know if this is caused by the cancer, or if there's something else going on.

I'm eating pretty lightly now, because it seems like the larger a meal I eat, the more likely I'll have indigestion and bloating afterward. So I'm not eating very much, and maybe that's why I'm having these odd weakness issues.

Again, there's some discomfort associated with the indigestion, but no pain at all.

A Quick Update

The past couple of days have been up and down. I have some discomfort, mostly related to indigestion, but no pain. Last night, I went to Suzanne's with John, but I wasn't up for much. I snoozed on a sofa in the den while they watched TV in the living room.

Even though I wasn't in the room with them, it was comforting to know they were close by.

When I got home and to bed, I had the best night's sleep I've had this week.

I have a lot of email I need to answer.

An Overnight Nadir

If you didn't already know it, I get depressed sometimes.

And typically, my depression gets worse as the evening goes on. The "Sitting In A Box" post was written right before dawn, after a night of fairly restless sleep.

The solitude thing is still a problem. This is a bad time for me to spend a lot of time alone. But the previous post was written at an overnight nadir, and doesn't reflect the way I feel every minute of the day.

Sitting in a box

Solitude really sucks right now. I wondered how I would actually deal with this in a real crisis, and now I know: I don't deal with it well at all. Evenings and overnights are the worst.

I don't think I'm wanting a lover. But I am wanting Quan Yin, that bodhisattva of unlimited compassion, to come and sit with me, sleep beside me, ease me through this time.

It would take a woman of unlimited compassion to go through this experience with me 24/7. It would completely be an act of selfless charity, not something motivated by desire or attraction.

I keep telling myself I am one with everything around me, and that solitude is only an illusion. But at the basic emotional level, it feels like I'm just sitting in a box, out of everybody's way, until I die.

My (other) brilliant career

In a comment to a previous post, James Stover referred to a website I once had. I remembered it as 'The MCARP Institute of Situational Journalism Ethics," but that was actually the subtitle. It was called "My (other) brilliant career."

It was sort of a proto-blog that I created in 1999, when blogging was still in its infancy, and I was still ranting daily about the idiocy of TV news.

The original site is long gone, but another former reporter, Ike Piggott, archived it and has republished, with my permission, most of the original content at his site, Occam's Razr.

Here are some of those posts from 1999 - 2000:

Adrenalinholics Anonymous

Mt. Everest Is In Alaska

The MCARP Guide to Sweeps Series Planning

It's A Reporter's Worst Nightmare

I Was Suppose To Be An Anchor

Where There's Smoke, There's Breaking News

There are a few more there. If you'd like to read all of them, visit Occam's Razr and search for the keyword "mcarp".

Stage IV

Had the CT scan today. The cancer is Stage IV. It appears to be in both lobes of my liver, and there's a tiny spot on my lung that may or may not be it as well. The next step is a needle biopsy to confirm the liver cancer. After that, radiation, surgery and chemo. And a colostomy.

Michael Landon

I've been thinking about that last interview Michael Landon did with Johnny Carson in 1991. I remember he looked terrible; he would be dead six weeks later.

I found the interview on YouTube, and started to embed it here. Then, upon reading further about it, I discovered Landon didn't die of colon cancer, but pancreatic cancer.

So, never mind.

Strangely, I feel a little better now.

A chat with a doctor

I talked on the phone this morning with a doctor friend who lives out of state. She asked me some questions about my condition that no one else has asked, including my GP and the GI specialist who did my colonoscopy.

I don't want to go into a lot of unpleasant detail – we are talking about my colon, after all – but after I described my situation, she said, "Well, at least you don't have ________."

I replied that I did, in fact, have ________, and that seemed to give her pause.

She suggested that the next step for me will probably be a CT scan to 'stage the cancer', as she put it. In other words, to see if it's spread to other organs.

See assured me that tremendous strides have been made in colon cancer treatment in the past 30 years, and that it's "by no means a death sentence."

Cats

Starting maybe two months ago, my gregarious and affectionate black cat, M. Gastón, began spending more and more time away from the house. I would let him out, and he wouldn't come back until the next day. Then he'd stay gone for two days, then three. Sometimes I would see him sleeping on a neighbor's porch, or wandering through a front yard across the street. He's been gone four or five days this time.

In the meantime, my grumpy old ex-cat, Rollo, has come back home (with some encouragement from me), and is sleeping on the bed with me this evening. He's been living with neighbors for more than a year, and I think he left because he didn't like Gastón. He's OK with being here as long as he's the only cat.

I wonder if this has anything to do with one or both cats sensing my illness. Probably just coincidence.

Friends and sanctuary

I spent last night and the night before huddled with my friends soartstar and blogblah. I am fortunate to have many friends these days – far more than in my days as a minor local television personality – and there are a lot of places I can go.

But the safest and most comforting place right now seems to be Suzanne's dimly lit living room, with her and John close by, and something playing on the TV.

I wrote a description of my situation on Facebook early Friday morning, and fifty or more friends from all over the country have sent me messages.

At some point, I'll turn to many of them for some kind of moral support or practical help. But I don't want to wear people down with my needs and issues.

Right now

I am, as many of you have long known, prone to over-thinking and obsessing about even trivial stuff.

From a Zen perspective, the thing to do now, I think, would be to sit with this. But I doubt my ability to do that. I'm afraid I will either get so comfortable with it I'll just give up (an idea which already has some appeal, frankly) or work myself into a complete panic.

So instead of sitting with it, I'm sort of frenetically trying to keep my mind occupied with other things – anything, in fact, that will keep me from dwelling on this illness.

Later that afternoon

There's a sort of seedy little convenience store two blocks from my house. I've lived here eleven years, and I had never set foot inside it until Thursday afternoon. I was still proscribed from driving by my doctor, and I didn't feel like walking the 3/4 mile to my regular convenience store, so I went to this little store instead. I bought a quart of Diet Dr. Pepper, the first bag of Fritos I've eaten in years, and a KitKat bar.

Some of the inventory looked like it had been in the neighborhood longer than I have. I doubt I'll be back.

It's cancer.

So here it is: the doctor found colorectal cancer yesterday. I have a horseshoe-shaped tumor that covers about 65% of the inner circumference of my colon. I'll meet with another specialist in the next few days to discuss treatment options.

That's all I know.

Random Update

I go in for the endoscopy and colonoscopy Thursday, so I'm now in the zone where my diet is restricted. I have to go to the pharmacy today and get all that stuff you have to take before you go to the hospital.

One of the things that's on my mind (since I still tend to worry about things over which I have no control) is whether this will turn out to be some sort of tumor, rather than just a return of the ulcers.

I am on the fence about what I would want to do if this turns out to be something life-threatening, or something that needs expensive and invasive treatment.

I've had a pretty good five years of retirement. That's more than some of my coworkers had, since they died before they could retire.

To bankrupt myself financially just to spend another ten years sitting around the coffee shop seems kind of pointless. I could do hospice instead, let nature take its course with my body, and leave that money for a scholarship fund or something.

But I don't have to think about stuff like that until I know exactly what's wrong with me.

Random update

Just a note to talk about my health. I'm not feeling 100%, but I am about 85%, which means I'm able to get out and tend to most of my fairly sedentary daily routine.

But my search for a love life is on quasi-hold, mainly because I don't want to take someone out, get sick and then have to cut off the evening early.

I'm still getting quite a few emails from women via okcupid – and I mean emails from thoughtful, quirky women whom I would gladly take out if they lived in my area code.

Some evenings I go to bed thinking, 'Damn, I'm sick of being here alone,' but other nights I find myself thinking, 'I am so glad to have this bed and this time all to myself.'

It snowed last night. My dogs are inside, but the cat's outdoors somewhere. Couldn't get him to come in.

Trying to not feel like crap

December was a month I just sorta missed. As in, I wasn't actually here for it. Days when I was almost indescribably tired, but always completely alert. Days when I was woozy. Days when my stomach was doing weird stuff. Days when I slept all day long, and days when I barely slept at all.

My friend DianeC finally recommended a combination of over-the-counter antacid and iron supplement. After about four days of that, I was back to normal, and felt better than I had in weeks.

I still have a colonoscopy and endoscopy scheduled for later in the month.

But just as I was recovering from the month of tiredness, I got hit by some other kind of bug. I spent the whole day yesterday in bed, fighting off chills and fever, coughing, sneezing, body aches and the like. But I seem to have mostly gotten rid of it today.

No more free printing

I put new ink cartridges in my inkjet printer yesterday. I mention this because I used up the previous cartridges printing stuff for other people. I printed maybe ten sheets of paper for my personal use. All the rest was for about three people who had come to think of me as their own personal Kinko's.

When you offer to print something for someone, I've learned, their likely response is to then insist that you also provide them scanning, email service, web browsing, layout and design service and faxing. Someone actually got annoyed with me a couple of years back because I didn't have a fax machine here for her to use.

The real Kinko's (now FedEx Office) is about six blocks from my house, and not terribly expensive. I sometimes use it myself.