On the Road in Madison

We (daughter and I) are in Madison, WI for her university orientation. Last night was spent in a bare-bones dorm room (she in the female wing with a roommate and I in the male wing solo so far). I am sure that my original dorm room was not too different from this one, but in those days it seemed larger. It has been a while since I slept in a bed that narrow and had to trundle down the hall for my nocturnal visits to the bathroom.

So far today, we managed to meet for breakfast in the dorm dining room before I dropped the girl off for a morning full of placement tests. My "todo" list was pretty short. Buy a two-day parking pass, buy a newspaper, find a coffee shop with WIFI and read paper. It's 9:45 in the morning and I have already exhausted my chore list. I don't expect to hear from Kate until sometime after noon so I have a lot of time on my hands and it's too early to hit the brewpubs.

Check back later and I'll let you know what exciting things transpired.

Ciao fer niow.

It's a Go, Again

Well, somebody's magic wand worked.

My blood counts, specifically certain white blood cells, have been in the dumper for about two months now, preventing me from continuing with the Mayo study drug. In fact they were so low that I received special booster shots that came right from some underground secret bunker and were flown by special stealth aircraft right to my clinic where they were administered (painfully) for three days in a row. These things were guaranteed to put hair on your chest, increase your genital size (neither particularly attractive items if you are female), and scare the bejezus out of your bone marrow, thereby supercharging the production of the missing white blood cells.

Well guess what? Didn't work. In fact, the critical cells dropped in population. WTF? Am I an alien? I get these expensive secret shots and my skimpy neutrophils take a dive? What gives? I certainly have no clue.

As a result, my oncologist at the Mayo says she wants me to come down for another bone marrow biopsy. Her theory is that I am not making WBC's because my bone marrow is either A) totally infected with cancer, or B) dead. Neither of these scenarios sounded particularly appealing to me, so without telling her, I preferred to believe there was a series of options starting with C and running on for some time that would have all sorts of other possibilities described like, "subject proves to be a mutant with unpredictable healing powers" and going on along those lines.

So anyway, my son and I dutifully head south to the Mayo last week for said procedure. We leave early and arrive on time for the mandatory blood punch. No matter where you go for whatever procedure, they insist on stabbing you in the arm. This was no exception and I waited along with about 100 other cattle for my number to be called, my elbow punched, the obligatory test tube of blood to be drawn, and the "gauze" tourniquet to be applied that would make it impossible for me to bend my arm until its removal in some conspicuous public arena where it could be discarded in plain site of hundreds of people, thereby giving rise to suspicions of possible plague or TB threats.

From there we hustled up to our biopsy appointment where I made the mistake of congratulating myself on getting a 10AM appointment that meant we might be back home before the evening rush hour traffic hit and I could still make a little of this day. Big mistake. Oh, it was my fault entirely. By now I should know better. I was just feeling so good that I spoke honestly when a little bending of the truth could have saved so much more time.

It was at the check-in desk that I made my fatal error. When asked if I had eaten anything the red alarm bells should have gone off, but no - my serendipitous mood compelled my mouth to speak before my higher functions could kick in and I said, "Well, I had a piece of toast about 7 AM." "Anything on it?" she asked? "Just a little olive oil," I replied. "I'll be right back, please have a seat," she said.

It still had not sunk in that I had made a terrible blunder. I sauntered over to the seats where my son had already extracted my laptop from its case and was busy booting it up. I was thinking of all of the nice drugs I was going to be receiving in very short order when I heard my name called from the desk. Oh-oh, these things are never a good sign.

Upon returning to the desk, the nice nurse informed me that with sedated procedures (like what I was going to have), no food or drink could pass my lips for six hours prior to the procedure. Therefore, they would have to move my appointment back to 2 PM - was that OK?

Hmmm, lets see. We got up at the butt-crack of dawn and drove two hours so I could do this thing and get back home at a reasonable hour. Now, everything gets pushed back by four hours and my kid and I are like homeless people until then. Of course all of the other options were worse so I said OK and we left.

On any other occasion, I would have taken my boy to the place with the best burgers in town, but the no food/no drink kind of put the kibosh on that. In the end, we found a local newspaper, checked out the local movies, and went to see the new Batman flick at some suburban mall. Luckily, our new car has a nav system that lead us right to the place. All in all, it was a fine way to spend the time except for that it ran a little longer than expected and I arrived back at the Mayo about 45 minutes late.

I have to say that they were good sports about it all and still let me get holes drilled into my pelvis with juice and core samples taken. And they even let me have the sedation as promised so that I don't recall a bit of it, but awoke bright and chipper afterwards, and after promising that I would let my son drive home, they sprung me loose.

The drive home went fine. My son is proving to be a good driver, having only given me one heart attack moment when he slightly misjudged his closing speed on a stopped car in front of us.

However the next day started with a weird phone call. I was still reading the paper on the screen porch when the phone rang. It was the Mayo saying that my blood test results were a little unexpected and "could I please get another blood test today?" Unexpected in what way, I asked. Well, she replied, the cells in question seem to have made a rally outside the bounds of expected behavior. Well then, I said, you must have mixed me up with someone else, but sure, I'll get another test done up here today and have the results faxed down to you.

Hmmm, I thought. Very strange. Now a problem was laid in front of me. Do I go back to the local clinic that has been doing all of these tests, or should I find a new place?

I don't think I have written of this, but back when I first started this Mayo study and learned that I would have to have blood tests done on a frequent basis, I looked around for a clinic that was close to my house where I could have this done and that participated in my insurance plan.

Thanks to the marvels of the internet, I was able to go to my insurance providers website and search for clinics associated with that provider that were close to my zipcode. There were a number that showed up, but a phone call to the nearest gave me all I needed. They would do the blood draws, send them to a lab, and fax the results to the Mayo - no problem.

OK, I thought and scheduled my first appointment. But when I walked through the door of the clinic for the first time, I began to have misgivings. There were pictures of the Pope and the Virgin Mary all over the walls. There was Christian soft rock on the sound system. There were a lot of children and mothers around. I have to say that everyone was very nice in a Stepford wife kind of way. Nobody said or did anything that was unusual or out of the ordinary, but I was totally creeped out every time I went there.

You need to understand my frame of mind at this point. First, I was feeling pretty good physically. True, I was having night sweats, but they varied in intensity and lately they were on the light side. And, the low-grade fevers had disappeared as far as I could tell. During the day, I felt pretty damned good, which didn't quite jibe with the dead bone-marrow scenario. So, my conspiracy theory persona kicked in and asked theoretically whether the Uber-Catholic clinic might be "off" when it came time to reporting my blood test results.

Now, let's take a reality check here. First, I am not a conspiracy fanatic. I don't see plots behind every bush (except for the Wellstone plane crash). Second, I don't know how simple blood tests are done now, but when I was first studying these things, people did them while looking at slides under a microscope with a clicker-counter in one hand as they identified cells in their viewfinder. I suppose now it is all automated, but in the end, errors can be made.

The problem was that my counts were so low for so long (all done by the same clinic/lab) and then there is this miraculous leap in numbers seen first at the Mayo and repeated again by the new clinic that redid the blood test as asked - so where do I go with this? To a happy place I guess.

Whether there is a conspiracy or not, I now have the go ahead to restart the Mayo study drug. I hope that in doing so, I can lay off on the last of the night sweats. They are such a pain. We shall see.

In any event, I am in better shape now than a few weeks ago (according to the tests), so that is worth celebrating (on a minor scale at least). So, have a good weekend. I'll let you know more as it comes in to me.

Ciao.

Routines

It's Sunday morning around here. The larvae are still sleeping. The Dawg and I have gone through most of our morning routines which prompted me to think some about that.

These days, routines take on more importance to me. I suppose that they provide the structure that I wrap my time around. In the old days, when I worked, routines were forced upon me. Now my life is much more free form, so I get to choose my own little practices (well, sometimes I get to choose).

In writing of these things, the first problem is where to begin. Does a day begin the first second after midnight or when you get up. This is an important distinction for me because there are a couple of routines that I must deal with that occur in those dark and silent hours when most are asleep and dreaming.

I wake up at least twice between midnight and six in the morning. On at least one of those occasions, I get up and peel off the soaking T-shirt that clings to my sweaty body and lay it over the edge of the bathtub before sitting down and giving my bladder a well deserved emptying. I sit because its dark and I don't have to aim and its easier than standing when in a partial wake mode. As I sit there I feel my body cool as the sweat slowly evaporates. Then it is up and into the closet for a dry T-shirt and then back to bed - trying to avoid the wet, sweaty patches.

When I can finally persuade myself to rise for the day there is a similar trip to the bathroom where another shirt is left on the alter of night-sweats and a fresh one donned along with a pair of raggity sweat shorts before exiting the bedroom and performing another morning routine - shutting off the lights that illuminate the stairs going down to the lower level.

Then it's into the kitchen, open the patio doors, hang up the hummingbird feeder that was brought in the night before to keep it from being emptied by raccoons, then fill the tea kettle with water and put it on the burner to heat before heading to the laundry room to greet the old Dawg.

Dawg and I have our morning routine down pat. I open the door, she slowly rises, stretches, shakes herself a bit to send the last shards of sleep flying, comes over for an ear scratch, and then starts prancing excitedly for me to open the door and let her out into the day. As I go through this routine every morning, I have my own internal litany that I go through. I silently thank the universe that I have the opportunity to spend one more day with this smelly, grizzled, gassious creature that seems to be my personal, hairy, itchy guardian angel.

Then it is out the door to explore the morning as we make the walk down the drive. Me to retrieve the morning paper. Her to chase whatever form of wildlife might be visible, smell all of the interesting things that only dawgs can smell, and to at some point do her morning pee (and sometimes poop, but usually that comes later).

Having gotten the paper, I slowly walk back to the house swatting at the deer flies that buzz bomb my head at this time of year. The dawg runs around on her own routines, meeting me at the back door knowing that breakfast awaits just on the other side. She and I then go through that routine which never varies. I put two scoops of dried dawg food into her bowl, run a little water over it and set it down. I then pick up her water bowl and dump it out and then refill it. She always stops eating and backs away a little as I set the water bowl down next to the food bowl. There is some kind of dawgy etiquette going on there, but I don't know what it is.

While she eats, I grab the paper and continue with my routine of coffee making. The paper goes down on the kitchen table as I walk over to the corner of the counter where the little appliance garage is. I extract the coffee grinder and the plastic tub of beans. I measure out six scoops of beans (down from eight - trying to find the sweet spot of coffee production - enough but not too much) into the grinder, plug it in and turn it on.

While it noisily goes about its business, I gather up yesterdays coffee and filter from the Melita on the counter, throw it away in the kitchen garbage (should I compost it?), and prepare a new filter for the Melita cone.

By then, the grinder is done and the ground beans go into the new filter and the cone goes on top of the glass carafe. The water is boiling by now and it is slowly poured over the coffee in a sequence of about four pours. While each pour is draining through the grounds, I prepare the thermos and find a mug for myself. When the last of the boiling water has been poured and drained, the mug is filled and the remainder poured into the thermos.

Then with mug in hand, I grab the paper and walk out onto the screen porch to one of the rockers, coffee on the side table, feet up on the cushioned stool and I begin to read.

That first mug of coffee usually sees me through the first section of the paper. The second mug gets me up off my duff and if it is a week day, down to the computer in my office to download the financial's from the day before and to make sure any bills that are due are covered. If it is a Sunday or Monday, there is no financial data to download, so I may check emails or like today, compose a post. Then it is back upstairs for a little more paper reading before preparing my breakfast in my routine fashion (of course).

If you have stuck around this far, I can only assume that you either have no life of your own and are living vicariously through me, or you hope in vain that I will actually write something clever and justify the amazing amount of time you have spent reading this entry, or you are genuinely curious about what I eat for breakfast every day. Well, here you go.

I cut a slice of homemade bread a little less than an inch thick. I place it in the toaster and while it is toasting I pour a large glass of orange juice, collect my morning ration of pills from the little dispenser on the counter and carry the pills and juice out to the table on the screen porch. Then it is back inside for a small plate which is laid in wait on the counter next to the toaster in preparation for the exiting moment the toaster pops its treasure up.

Before that happens though, there are more routine steps to go through. There is the wooden tweezers to get from the utensil jar on the counter (for grabbing the hot toast from the toaster), the teaspoon to get from the silverware drawer and the olive oil to retrieve from the liquids cupboard just above the toaster. When all is laid out in its proper place, the toaster pops, the tweezers tweeze, the olive oil is poured into the teaspoon with a little slop over, and the teaspoon distributes the oil over the piece of toast. Then a quick clean up (oil into the cupboard, spoon into the dishwasher) before carrying the toast out to the table where it is consumed with relesh while reading the remains of the paper with the routine wrapped up by the downing of the pills assisted by the orange juice.

There you have my morning routine. It varies little with the seasons. When it is inclement or too cold to be on the screen porch, the kitchen table serves as an alternative location. Sometimes I am out of orange juice and have to drink plain water, but all in all, that is how I start my day.

At some point, usually as I am ready to take my first sip of coffee, Dawg comes up to me and nudges my arm with her nose signaling a need to go out. Our summer routine on this has me letting her out the laundry room door and then returning to my seat on the porch. When she is ready to come back in, she comes around to the back of the house and up on the deck outside the door to the porch where she will wait for me to let her in. In the winter, I simply wait at the laundry room door as her excursions are shorter and I am not going to be sitting out on the screen porch in my skivvies to let her in.

All of these things will change of course in the relatively near future as we relocate to our new home up north. Dawg and I will have to redefine our procedures for her toiletry needs. Our new yard will be much smaller and more public. There are actually dawg katchers up there who will snatch up dawgs not on a leash. So the days of letting her out the door and not worrying will be over.

We will figure things out though. New routines will be established that we can all count on and measure our time by. If you hang in there, I will let you know what they are.

Life is Too Short

Life is too short for some things. For example, I hate my toothpaste. Why should one have to subject ones self to an unpleasant situation twice everyday? I have enough to be depressed about without having to dread brushing my teeth.

That's what I mean. Life is too short for this shit.

So why am I dealing with it every day? That is the big question.

Background - I needed to buy some toothpaste to replace the tube that the nazi security guards confiscated on my way back from Mexico. I know, I could have avoided it by buying some small tube of whatever, but I spaced it and the vigilant guard was rewarded after taking apart my luggage with a tube of organic toothpaste, which he pitched.

So, upon returning home, I went shopping for a replacement and bought a tube of organic toothpaste from a known national brand, but did not look at, or did not register the flavor. It was not until the next day that I discovered that I had bought a year's worth of horrid flavor that I would have to subject myself to every morning and every night.

How many of you chew fennel for fun? Bueller? Anyone? Anyone?

Just as I thought. No one in their right mind would buy anything that tasted of fennel. Would they? No.

So now I have this tube of hateful toothpaste and I can't seem to get rid of it. Oh, it would be simple enough to buy a different tube of toothpaste at the natural food store. I know that, but it hasn't happened so far. Why not? I hate this stuff. What is keeping me from just buying a new tube of toothpaste? What is my problem?

Do you see my dilemma? This is a simple problem to fix, but I seem to be incapable of doing so. Am I caught in some kind of Greek drama, doomed to live out a scenario that is obvious to the actors, but unchangeable?

You tell me. I don't know.

What I do know is that if you don't like your toothpaste, change it.

P.

*******************

Postscript: Another thing I know. Don't blog after taking pain medication. He he he.

Gimps

My daughter is in a leg imobilizer and popping pain pills like tick-taks and I have a left hand that is still partially numb and wrapped up in a soft elastic bandage. My son is being called upon to wait upon our needs which should produce sufficient material for at least a couple of posts.

The girl's surgery went well according to the surgeon and she is able to hobble around on it, but is still confined mostly to her bed. My surgery also went well (I think). I even got to see the work they did before they sewed me up (way cool). But, as I say, the paw is still mostly numb so I am reduced to doing minor wiggles that I can't really feel.

On the matter of my blood counts, my Mayo doc wants me to come down for another bone-marrow biopsy to see if they can determine why I am not regenerating my neutrophils. So I will do that early next week. Fortunately, I now have a chauffeur who is more than happy to assist me with my transportation needs.

That's all I know for now. More later.

Still Waiting

I was hoping to be able to give you all a definitive report on my health status and treatment program but it was not to be (for now anyway).

I had a blood draw done on Thursday morning in plenty of time for it to be sent out to the lab and the results faxed down to the Mayo. On Friday morning I called the study administrator at the Mayo with that information and asking her to call me as soon as she got the fax. That was a voice mail transaction.

Later, I called the clinic where the blood was drawn and spoke to the receptionist (always an opportunity for the ball to be dropped) and asked if the results had come back and had been faxed to the Mayo. She said she would get a message to the doctor and have them get back to me (another bad sign - I haven't seen the doctor since my initial visit). Later still, I got a phone call from someone at the clinic who said she had "misread" the message and that she had faxed my previous results to the Mayo. No word on whether my new test results were in.

I recalled the study associate at the Mayo and got VM. Repeated a couple of hours later - same result.

Long and short is that I did not hear from the Mayo by 5 PM which means that I would hear nothing more (or at all) until Monday at the earliest.

So, I am still not taking the experimental drug. I am still going through night sweats, but the low grade fevers seem to have backed off. Maybe the white blood cell boosters have worked. I don't know.

So we did what we had to do this weekend. We packed the Dawg off to the neighbors, packed ourselves up Saturday morning and drove up to a friend's cabin near Moose Lake for a reunion of the group who went down to Mexico for spring break a few months ago. My assignment was appetizers and Mango Martinis. I am happy to say that cudos were given for both.

The Mangotinis were so popular that we had burned though the bottle of vodka by 9:30 last night and I retired shortly after that.

This morning, my daughter drove us into Moose Lake and abandoned us at Art's Cafe as she beat a hasty retreat to the Twin Cities to renew her acquaintance with her boyfriend while my son and I waited for our new car connection to meet us at the cafe.

Fortunately we were able to get a breakfast order in before the car guy, his wife and son walked through the door. While we were waiting for the food to arrive, we concluded the transaction for the car and when we walked out full of eggs and hash browns, we had a brand new (used) Prius waiting for us.

Took us a few minutes to figure out how to make it go, but since then it's been 50 mph as we trundled on down the road. Now I'm sitting in my favorite local brew house, nursing a pretty fair IPA and writing up this post. Tomorrow, I'll meet with the builder, feed the money monster, and see if I can get my kid enrolled in a school here.

There it is. I'll let you know whenever I hear from those slugs at the Mayo.

The Fifth

I'm not taking it. It is it. You know, like The Fourth, only a day later.

Nothing dramatic to report. The boy and I got back on Thursday and I almost made it to my medical appointment on time. I learned there that I have mild carpal tunnel issues in my left wrist which should be "watched" for the time being. My thumb on the same hand (NPI) needs a little loving scalpel attention. He said that I could waltz in and after a little local anesthetic, zip, snip, and out I go with no more trigger thumb. I think I'll sign up for that.

On the FOURTH, my son and I went on the annual Watermelon ride. We wimped out and settled for the 15 mile route which kept us mostly on trails in the area. It was a beautiful day for an activity like that. By noon, we were home.

After that, the boy went off with his aunt and I just lay around all day occasionally taking a tylenol for the low-grade fevers that continue to haunt. Bout six, I headed over to the old neighborhood for a low-key BBQ followed by a pontoon boat ride out on the lake as the local shoreline residents attempted to outdo each other with their fireworks displays. Since when have private individuals start providing entertainment like this which could give some small communities a run for their money.

It was pretty nice. Old friends, good food, free entertainment. Even so, I was ready to head home when it was over to my empty house and my smelly dawg.

Now, it's the FIFTH and things are quieter again.

Up Nort

Two gorgeous days in a row. It's enough to spoil a guy.

My son and I drove up yesterday after getting off to a slow start. You would think that with a slow start, I would have had plenty of time to make sure I packed everything that I needed into the car. The last time I drove north, I forgot to pack my meds. This time I almost left without the dog food, dishes, leash, etc. I was reminded of that at the last moment by my co-pilot who was still rubbing sleep out of his eyes. Why he didn't tell me about my toilet kit, I don't know.

So, here I am with a brand new toothbrush, toothpaste, contact case, contact solutions, but no glasses which means that once I take my eyes out, I am totally dysfunctional.

Work proceeds on the house. I am starting to see some exterior framing going on which will slowly define the expansion on the lake side of the house. Late this afternoon another cement truck pulled up and the floor/ceiling of the garage expansion was getting poured. I hope that I can catch a couple of snaps later today to upload to the web album.

For those of you who are keeping score, my latest blood draw did not clear the hurdle. In fact, the neutriphil count lost some ground. This resulted in a flurry of phone calls between the Mayo and my pocket (fone home). I am now set up to receive a series of WBC stimulus shots starting next Monday. These are the same little shots that I used to give to C when her counts dipped too low. They come in little tiny syringes with real big price tags. And (bonus), they hurt a lot.

Hopefully, they will do the trick and jump start my WBC factory so that I can get back on the study drug. We shall see.

We head back south first thing tomorrow morning. I have to meet with the hand surgeon early in the afternoon. I am interested in what he/she will have to say.

That's all for now.