Wednesday, January 30, 2008


It's been snowing all day - not super heavy, but steady. Great skiing. I was the first one down today with rubbery legs and oxygen depletion. It's still snowing up on the mountain and I am at the library using the WIFI hotspot to send this out.

Not much more to say other than I am bushed and will hit the hay early tonight.

Sunday, January 27, 2008

Heading for the Hills

As I type, I have on my new skid-lid which was kind of an impulse buy as we were at REI to get my kid some goggles. I have been thinking about getting one for years, but just never got around to it. Since I am leaving Tuesday for a week of Colorado steep-n-deep I figured I would pick one up. It's a bit tight, so I am wearing it for a while to see if I can squish the padding down some.

I wasn't sure if I would make this trip. As some of you know, my father passed last Friday and I was not sure what the schedule would be regarding services. We decided to set things up for February 18th which will allow for my distant siblings for make arrangements for leave and travel. It also allows me to use the Colorado tickets that otherwise would have gone to waste.

So I will be off to ski camp for the first time in three years. This is kind of a special occasion where friends gather at a condo in Breckenridge. One comes from Tokyo, some from the Midwest. There is a daily rhythm that has been a bit ritualized over the years. The day always starts with cappuccino as we arise before the sun and peer out the window at the thermometer and the sky - trying to judge the weather and the skiing conditions.

The bulk of the day is spent on the mountains where we ski as hard as a bunch of old fools can. I usually burn up all of my strength early the first couple of days and head back down before I hurt myself seriously. My friend, the condo owner, has usually been at altitude for at least a month (he spends the winter there), so the contest is really quite unfair. Plus, he likes bump runs which are not my cup of tea. Give me the steep and deep and leave the bumps to the youngsters who still take their knees for granted.

Once we have all gathered in the afternoon, there is usually a hot-tub session followed by a bit of single-malt.

This year I have special concerns. As you may suspect, I am not at my peak physical condition. I tire easily now and have not trained at all. In addition, I am suffering from some kind of skin condition that itches in the most insatiable way. I am trying various ointments to relieve the itching part, but will not be able to address the root cause until I return from the mountains. I come back on a Wednesday and leave immediately the next day for the Mayo Clinic to see if they have any special programs that might offer me a treatment option. I hope this skin thing will hold its course until then at least.

OK, that's it. Time to take the helmet off and relax for a few moments.

Saturday, January 26, 2008



Thursday, January 24, 2008


My father is dying.

If not in the next few hours, then probably by tomorrow.

Of course, he could fool us all. His sense of humor was always hidden from me.

I was his first child and he was not an easy father to train.

Not that I knew what I was doing either,

we were both so stubborn. It was a difficult time.

He is still stubborn.

Stubborn at living.

Stubborn about dying.

His finer parts left some time ago.

Off to wherever it is we go when the body's dross becomes too heavy.

His leaving will affect us all.

Like snipping a strand out of a spider's web,

the shape will change, but

the web will remain.


Do you know that parts of you will remain in me?

Sometimes I am frightened by which part I see.

Pieces of soul,

Pieces of life,

Living on in those left behind.

Fare thee well, old man.

Wednesday, January 23, 2008


One would think that with only one thing on the daily calendar, one could make that appointment. Right? Wrong.

I am such a bonehead. I looked at my calendar (more than once today). I knew I had an appointment. I reminded myself as I did paperwork this morning. Then I went off to do errands and completely forgot about it. DOH!!!!

It was an appointment with a physical therapist to see if I can reduce, or eliminate the symptoms I am experiencing due to a compressed disk in my neck. I hate it when I do that. I hate it when someone does that to me.

I am always a little uncertain when it comes to talking about my physical condition, but I suppose this would not be much of a record of my journey with this disease if I did not, from time to time, talk about what was going on with the part of me that moves, hurts, cuts, and bleeds. In other words - the meat.

I mentioned the pinched nerve in the neck. That makes my arms go numb when I lie in particular positions. I wake up often in the night with wooden hands (one or both), or pins and needles in my hands and fingers. This makes sleep difficult once I wake up and contributes to a day-time sense of fatigue.

When I am not laying down (most of the day), I sometimes feel an ache or stiffness in my neck which makes for interesting merging situations when I have difficulty looking over my left shoulder. Actually, I think the PT stuff has made it better, but it is not gone.

Then there is the mysterious case of the "itch." About two weeks ago, I started getting little marks on my skin that, were it summer, I would say were chigger bites. They look like that and they itch like chigger bites (which is more like chigger bore-holes where the chigger crawls into your skin and starts to decompose - the little buggers). But it's not summer. It's five degrees (F) below zero outside.

Then, I thought that maybe one of my children had given me bed bugs, but there is no sign of critters sleeping with me. Still, once I thought of that, I have had crawling sensations whenever I snuggle under the sheets.

Finally, I went into the dermatologist's office yesterday and saw whomever had an open five minute slot. This guy tried to take skin scrapings using two glass slides. Now, what I haven't said was where these "bites" were located (or at least started). Let's just say that if he had slipped, you could just call me U. Nick (I know, misspelled).

After fiddling around down there with bits of sharp glass, he left the room (to look at my nut fudge I guess) and came back with some kind of light that looked like it was stolen off of one of the early Star Trek sets, flipped the switch, turned the overhead lights off and jammed it down between my legs. I wonder what he saw. Whatever it was, he said "Oh, it's positive."

Who knows what that means. This guy was not big on explanations. Anyway, he gave me a script for something that I'm sposed to roll on where ever it itches over the next two weeks. Other than that, he didn't explain anything. Just left.

So, I have a fifties cure for UV sensitive jock itch or whatever it is. We'll see if it works.

Then there are the lymph glands that are growing at a noticeable rate. This is not a good thing, but not surprising either. We know that the chemo stopped working and that the lymphoma is active. Still, it is disconcerting to be able to feel them as I go about my daily business.

It feels so unusual because over the last thirteen plus years, ever since being diagnosed, I have never felt sick or uncomfortable from the disease itself. All of the unpleasantness has come from the various treatments I have undergone. The lymphoma itself has been almost completely transparent.

I have always known that this would not always be the case. There would come a time when we would not be successful at our fight to keep the dragon away. I don't know if that day has come or not. I do know that we have depleted the treatment cupboard with the exception of a couple of options that come with their own issues.

My hope is that the Mayo Clinic has some magic smoke up their sleeves. I'll go down there early in February and see what they have to say. They may be doing some studies that I could get in on with some treatments that have not gone all the way through the FDA approval process.

There are a lot of unanswered questions right now. I'll keep you posted (but maybe not about nut cheese).

Friday, January 18, 2008

Mayo Dazed

The house is all picked up and shiny with all of the lights on, just like I never have it. While I wait for my departure time, I thought I would update you on my medical situation.

As you may recall, my oncologist and I decided to cease the chemotherapy that I have been doing every four weeks for the past year because it appeared to be no longer effective. The last CT-scan I had showed progression of my lymphoma.

Because I have been doing this for so long, I have run through all of the standard treatments available for this type of cancer. Each one gave me positive results for a period of time, but the disease always came back, which is its nature. So, at this point in time, I have few options. My oncologist did some research and we have decided to send me down to the Mayo clinic for a work-up and to see one of their cancer specialists. Apparently they are doing some things there that are not available to the general population.

I approach this with mixed feelings. I went down to the Mayo one other time early on in my battle with cancer and it was probably the worst experience I have had with the medical system. This was a surprise to me as I went into it with the expectation that I was going to the "Mecca" of the medical world.

My wife took the day off from work to join me at the clinic bright and early. I had come down the day before to get a CT-scan that the specialist I was going to see could analyse. We were a bit early for our appointment as we always try to be. Then we sat. And sat. And sat. We waited for three hours before being called back to see this doctor.

I have never before met such an egotisical, cold, boastful man in my entier life. And that is saying something because not only did I grow up in the medical world (my father was a physician), but I also worked in it on and off as a surgical technician. I have met my share of medical egos. This guy was in a different league.

Apparently, he was just back from some medical conference in Europe and was dying to tell about it. Not to us of course - we were specimens - but to his colleagues over the phone which rang every five minutes and which he picked up and used while we sat there. When he did feel the need to speak at us (not "to" us, but "at" us), it was in clipped directives.

In the end, all he said to us was that if I did not start some kind of treatment soon, I would die. Then he showed us the door.

I have never seen C so mad. She walked out of there with steam coming out of her ears. And then in the end, we had to pay out of our own pocket to be mistreated and insulted by the finest medical institution in the world because our insurance wouldn't cover it.

All of this came rushing back as I sat on the other end of the phone from my oncologist (who is one of the kindest and most caring doctors I have ever met) as he was telling me that he had arranged an appointment at the Mayo, AND because I had been there before, they set me up with the same doctor as previously. I am not kidding.

I politely told my oncologist that actually, I would NOT like to see that person again and as it turned out, the original appointment was set for a time when I would not be in town so he had to call them back anyway. A short time later he called me back with a new day and a new physician, a woman who he did not know personally, but who came recommended.

So, sometime early next month, I will let you all know if the Mayo curse stuck with me or whether it is a whole new world.


Wednesday, January 16, 2008

Shit - A Showing

I have just finished walking through the house with a cardboard box, picking up and packing away all of the family photos and paintings that have been set down over the last five years. There were the oil paintings that my daughter has done - not framed but just set on a flat surface leaning against something. There were the seemingly thousands of photos taken at school dances and of various sports teams. And there were the photos of us, as a family, as we were once.

All of this so that strangers can come and wander through our depersonalized lives. This is one thing I have been dreading about the selling process - having to leave the house for an hour or two so people can come in and look at it.

I am mystified by the protocol of selling real estate. I would rather show the house myself and be able to answer questions that prospective buyers might have. I would also like to size up a possible buyer because I don't want to sell this house to someone that doesn't feel right. I don't want to stick my neighbors with an asshole.

But that's not the way it's done, so I depersonalize and leave.

I don't know what I am going to do about the kids rooms. They have a half day of school tomorrow and I have told them that the afternoon will be spent picking up their rooms and closets. They truly hate me now.

Today's is my son's birthday too. I have hidden his present and want to make up a series of treasure hunt clues that he will have to find to get to his present. I hope my rhyming sense is working.

Thursday, January 10, 2008

Thanks For Your Thoughts

I appreciate the cares and concerns expressed by those of you who stop by. In many ways, this is a lonely journey and much of the companionship that I have comes from you out there touching base by way of shared electrons.

I cannot express much of what I think and feel with the two little humans closest to me. They have their own full plates overflowing with hormones, school, and the myriad of details which bombard them on a daily basis. Plus, they are my children and not on a plane where I can communicate much of this stuff.

My copilot had to bail out a while back and so now I am flying solo for the most part. I have family and friends, but they are many miles away. So you guys get to be my lucky support group. Thanks for being there.

For the next four days, it is just me and the Wonder Dawg here in the casa. Both larvae are off on a four-day Youth In Government retreat where they will form a shadow state government and carry on business of said government in the official buildings during the day and carouse in one of the major name hotels all through the night. This is one of my daughter's highpoints of the year and I can expect her to come home exhausted and suffering from post-YIG depression on Sunday. She got her brother enlisted last year and it looks like he is just as obsessed.

In the meantime, I can partay down (or go to sleep early as is my usual pattern these days).

Ciao fer Niow

Wednesday, January 09, 2008

Good News / Bad News

First, the good - I didn't have to do treatment today and so I can go hear my friend Gary play with his Grateful Dead tribute band tonight.

The bad news is we stopped treatment because it isn't working anymore.

The CT-scan I had on Monday shows a progression of the lymphoma.

Now we are back to looking at an ever dwindling list of options. My onc will call the University and the Mayo Clinic and the National Cancer Institute in Bethesda to see if there are any cool studies going on that I might be eligible for.

There are a few traditional chemo drugs out there that I have not yet tried. They are mostly used in treating other kinds of cancer, but have shown some effectiveness against lymphoma in the past. Of course, this is highly variable and holds no guarantees. I place these in the "Hail Mary" category.

Today's news was not welcome, but not unexpected either. I have been doing this for a long time and I know the score. I am centered and realistic. I also know the importance of remaining positive, which I intend to do as much as I can. You may have to put up with the occasional rant though.


Tuesday, January 08, 2008

Cleaning Day

I don't know what got into me. Must be the drugs.

Today was laundry day, and for reasons that are unfathomable, I tore apart, and thoroughly cleaned, the refrigerator.

Don't look in my garbage.

Monday, January 07, 2008

If It's Not One Thing It's......

There is nothing healthy about our health system. It is anything but. I should know. I have seen more than I ever wished to of clinic waiting rooms with the same well thumbed and smudged copies of magazines filling us in on the fascinating lives of the stars, laboratories where you are punched full of holes, x-ray chambers with humming donuts that give you a year's worth of radiation in thirty seconds, hospital beds where everything is coated in plastic so you sweat all the time and the beds are impossible to find comfort in, cafeterias full of unhealthy cardboard food, and insurance and billing bureaucracies where one erroneous keystroke lives on far longer than you will and generates mistaken financial records month after month requiring unending phone calls to anonymous voices on the other end of the phone line who promise fixes that never seem to come. How did we come to such a mess of a place and why do we put up with it?

Today I went in for one of my periodic CT-scans which requires me to start drinking contrast four hours prior to the scan. This stuff comes in plastic jugs with cute names like "banana" or "berry" when really it should be labeled "pukey chalk tasting sludge." I live far enough away from the imaging center so that I have to drink my third dose in the car, forcing it down while watching out for lane fading commuters with cell phones pasted to their ears. Today I was lucky and got to the place with time to spare, which, as it turns out, was good because I was greeted at the desk by a perky nurse type who informed me that their scanner was acting up and I would have to get back in my car and travel a couple of miles to the nearest hospital where I was expected in the "vascular and heart CT-scan" department. Shit, now I'd have to pay for parking.

Off I go and in time arrive to a full parking ramp. After circling a couple of times, I nailed a spot and headed into the hospital. After being challenged at a couple of checkpoints and having to verify my reason for being there, I arrived at the checking desk where I was asked once again to provide the same information I give every time I go (it's on the f*****ing computer, why do I need to give it every single time?) and oh, by the way, can we see your insurance card please? There is a little problem.

Did I mention that the contrast gives you diarrhea? I had to make an instant decision on weather to surrender my card, or run for the can. This was solved by flinging the insurance card at the clerk as I turned and sprinted for the men's room.

Somewhat later and lighter, I returned to the desk and inquired after my insurance card and was told that they were "working on it." What is to work on? I am in one branch or office of this medical complex at least once a month and get innumerable mailings from both the provider of services and the insurance company on a regular basis so that I know that I am in their system. True, most have at least one error on them requiring phone calls and sometimes backup letters of a threatening nature to correct the problem. Why am I suddenly a mystery to them.

While pondering this paradox, I am called back to the CT-scan room where the nurse proceeds to drill two dry holes before finally striking oil after switching to the other, less withered arm, all the time muttering something about how she couldn't understand it, been doing this for nine years, never had such a hard time. She should have been on my end of it. It feels like they are shoving the Alaska pipeline into the hole they drill into your arm.

This is all so that they can inject yet another form of contrast into you that makes you all hot in various parts of your body (and not in a fun way either). Then a robot voice tells you to take a breath and hold it as the bed slides slowly through the radiation donut and you are photographed in microscopic slices in a way that would embarrass the most paparazzi-phobic star in the mags. Did I talk about the diarrhea yet? It's still going on.

After retrieving my insurance card and being assured that all the problems were resolved (yeah, right), and visiting several more bathrooms on my way out, I found my car and paid my bail, I headed back to the clinic (across the street from the place with the busted scanner) to get some blood drawn and tested. I am scheduled for a chemo treatment on Wednesday (yea, six hours on a plastic covered bed), but my blood counts were pretty low last time so this month we'll look at them in advance. More magazines in the waiting room.

Actually, let me stop here for a second and say that even though I am going off on this rant about the injustices of the medical system, I am ever grateful for what I do have. I didn't have to look far in that waiting room to see folks who were having it harder than me. Much harder.

The part that makes me angry is that we seem to be incapable of fixing a system that is clearly broken. You have heard it all before I suspect. About how we pay at least twice as much as the next most expensive country for health care and that ours much is less effective. What's up with that? We used to take pride in what our country did and now we are like sheep who move along with our noses pressed into the backside of the sheep in front of us and don't complain. Well, I am tired of it.

OK, rant over.

I guess that I am feeling the effects of too much health care. I feel sick.

Thursday, January 03, 2008

Valley of the Dolls

Somewhere, someone has made a little doll and attached a bit of cast off hair, or perhaps a nail clipping or two of mine. Currently, there are three steel pins stuck in the back of this doll. One at the base of the neck on the left side that makes my left arm go all tingly. One just under my right shoulder blade, and the last one at the base of my spine.

I went to see the doctor yesterday and now have a prescription for some funny pills and an appointment to see a physical therapist in one week's time. I don't think there are enough pills in the bottle to last. It would be easier to just pull the pins out, but I don't think that will happen either.

The wages of sin.

Wednesday, January 02, 2008

On the Road to Home Repair

As some of you may know, I just put our house on the market. That means that I need to finally do all of those little projects I have been contemplating over the past few years. Patching pin-holes in the walls, touch-up painting, patio door fixes, and today's focus - re caulking the seam on the "love tub" in the master bathroom.

Running a bead of caulk is pretty straightforward - in theory. In practice, it can be tricky. In this case, part of the seam ran adjacent to part of the sink cabinet - about an inch and a half away. This meant that there was no way I could get the tip of the caulk tube on the seam much less at the correct angle to form the desired little bead. In this case, having a garage full of junk and left overs from previous projects allowed me to find a short piece of fuel-line tubing that could be inserted over the tip of the caulk gun and then flexed to deliver the caulk to the seam. Of course with the gun, the tube, and my fingers all down in this tight little space, I couldn't see a thing and had to caulk by feel.

All of the "how to" books speak of running a bead of caulk in one smooth motion from one end to the other. Never mind that the squeezing of the caulk gun trigger causes the gun to wobble with each pull. Then there are the tremors. No, I didn't knock off that bottle of tequila that sits in the back of the cupboard and as far as I know, I don't have MS or any other shaking type disorder, but I wound up with something that looked like I had applied it while tied to a jack hammer.

Oh well, I thought. I'll simply run a wet finger along the seam and smooth it all out. That resulted in silicon caulk squishing out on either side of my finger and building up on said finger so that in the end, I had two lines of caulk on either side of the seam and a big pile on my finger. No problem I thought, I'll wipe it off on a paper towel.

Well, I'm sure you can see where this is going. One attempt at repair led to another. In the end, I had caulk all over my hands, several paper towel squares loaded up with goo, and a seam that looked like it had been done by a drunk, palsied chimp.

When I went to the internet and googled up "silicon caulking" to see how it should have been done, I found this.

Now, where's that tequila?