Monday, June 22, 2009

Post Marathon

Grandma's Marathon has come and gone and with it, the sunny weather that finally graced our shores.

We had weekend guests who were up here for the marathon. The young lady of the family planned on running the 26 mile course, hoping to qualify for the Boston marathon. These folks were neighbors of ours when we lived two places ago. They lived kitty corner from us across the backyard and my son grew up best friends with their youngest son. You couldn't ask for nicer folks to share a yard, or a life with. It was traditional that myself and the father take our kids around the neighborhood every Halloween - a tradition that lived on even after we moved.

Often times on those walks we would talk over the issues of the day and at one time or another, the discussion would turn to my health and how things were going. We talked about how a serious illness can alter one's outlook on life and how we might approach things differently. My companion had his own scare a while before. While camping on the north shore of Lake Superior with the family, he became ill with what he initially thought was the flu, but which quickly became something more serious.

He wound up in the hospital in Duluth where the family learned that it looked very much like a brain tumor. He was airlifted to the Twin Cities where he underwent a long and delicate operation. The prognosis was guarded - a possible partial recovery. Most likely he would not walk again and would eat through a tube for the rest of his life. He proved them wrong by slowly, but determinedly regaining all of his previous capabilities. It was a trying time for the family and all of their friends - ourselves included.

When my wife was diagnosed with cancer, making it two for two amongst the adults in our family, our old neighbors were always there for us. Their support was something very important as we made our way through that difficult period.

It was with profound sadness that I learned that K, a woman of incomparable selflessness, was diagnosed with acute leukemia a couple of years later. After a long and hard battle, she passed three years and one month from when I lost my wife. That was about a month ago.

This weekend, the father and two of the three kids were our guests. It was wonderful to see them and to be able to spend some time talking, eating, and simply taking some down time. They are doing alright. As alright as you can during a time like this.

We were moving to the rhythm of the marathon's schedule. The young runner was up before the sun to eat breakfast and catch a bus to the starting line. My daughter was also up at the crack - an event so unusual that I feel the need to mark it historically - so that she could make it to one of the water stations along the route where she was going to volunteer for a five hour shift. The rest of us were moving a bit more leisurely that morning.

When we had risen, showered, and dressed in our finest marathon observation costumes, we walked the five blocks down the hill to the course where we could see the second half of the half marathon runners going by interspersed with the occasional wheelchair athlete. At that point, we were at about mile 22 or 23 and we slowly started making our way downtown toward the finish line.

Even at that time, about 9 AM, the sun was pouring down some serious heat that made even leisurely walking a sweating offense.

The leaders of the full marathon had yet to make an appearance and we were able to make it almost to the downtown district before the lead runner went striding by at a pace that I couldn't maintain for more than about twenty feet. He was flying. We kept looking for number two, but didn't see him for several minutes. The eventual winner won by almost three minutes over number two. It was something.

We made it to the finish line and were able to see many of the elite runners come in, including the three-time woman's winner. One of the two women behind her swerved to the side as she neared the finish line, almost as if she were going to shake hands with supporters behind the fence when she completely collapsed. She had to be evacuated by wheelchair and taken to the medical tent. How heartbreaking to get so close and not be able to finish.

It was shortly after that that we got a phone call from our young runner saying that she had to quit the race at mile thirteen. Reception was bad and the crowd noise high, so we didn't learn any details of what led to this, but we immediately left the finish line and began our hike back to mile 22 (or 23) where we would hook up with her.

By the time we got there, we were hot and tired and Risa had developed blister farms on both feet. We met my son there who gave us a ride up the hill to the house, where we were surprised to find our young runner sitting in the yard waiting for someone to come home.

It took a few minutes to ascertain that the reason she had to drop out of the race had nothing to do with her physical condition which seemed excellent, but rather it was case of emotional overload. This was the first time she had run when her mother wasn't there to cheer her on. Over the course of the first half of the run, she fell into an emotional hole that she couldn't climb out of and it took such a toll that she had to stop. It was very sad and obviously a huge disappointment for the young woman. Her father and brother arrived minutes later and we withdrew to allow them to be together.

It turned into one of those days where everyone found the need for a little siesta during the heat of the afternoon. That evening, the young lady abandoned us for the charms of a male friend whom she had not seen in years while we went out for a fine, late dinner.

Early the next morning we prepared a huge breakfast for us all and then bid adieu to our out of town friends.

It was a wonderful weekend where we got to share our house, our town, our favorite restaurants, with friends whom we had not seen in a while and whom we wanted to share our support in their time of need. We all got our souls fed.

Wednesday, June 17, 2009

It's the Legs

Not a whole lot to report here. I experienced a couple of nights of weird and extremely powerful leg pains that seemed to strike between midnight and six in the morning. It wasn't like a muscle pain but more in the bones. Kept me from sleeping and was so strong, it was everything I could do not to scream out. Massive doses of ibuprofen seemed to help, but when I saw my doc on Monday, he said that taking that wasn't a good idea along with the prednisone I was on as part of my hospital discharge prescriptions.

Instead, we decided to bump the prednisone up for three days and see if that took care of the pain. I am happy to report that is seems to have done the trick. I have one more night of the higher prednisone dosage and then I go back down to the diminishing doses I was previously on. We will see if the pain returns.

In other news, we are still waiting for summer temps around here. The flowers are in their window boxes and planters, but it's too cold to sit out on the deck and enjoy them. I think they are hibernating anyway.

We planted two hop plants down in the ground in hopes that they will reach the second story deck in a couple of years and populate the trellis with hops for making beer. We will see about that.

This weekend is the big marathon weekend in these parts. Much craziness will ensue. We have a family coming up from the Cities to stay with us while the daughter runs the 26 mile distance. It will be nice to have the company. The day before, another family from the same neighborhood will stop in for a shorter visit. These are old neighbors of ours from years ago.

People keep asking about the house and how it's going. The house is for all regular purposes done. We have a second coat of paint that has to go on and a screen door to be hung, but everything else is taken care of (I think).

Right now, we are working on landscaping the most visible corner of the house. The back and the east side will have to wait until the NO house sells. Still not much movement there. I keep my fingers crossed though.

So, that's about it. Nice to have a lack of emergencies to talk about.

Friday, June 12, 2009

Free and Healing

Two weeks ago at about this time, I was starting my decent into severe rigor and hallucinatory fever dreams. By midnight, I was on my way to the hospital. For the next three days, I would continue to deteriorate despite the care and attention of the hospital staff. On day four, new doctors were added to the team and one, an infectious desease specialist took charge, threw out all of my old meds, canceled my Mayo chemo drug, and prescribed a new regimen of antibiotics and heavy steroid applications. I started to respond.

Tonight, I sit on my deck at home surrounded by family and enjoying a gin and tonic. What a trip it has been. I am mending quite well I believe. Of course I haven't had a blood test or been examined by a physician since leaving the hospital last Monday, but I feel internally that I am recovering. I am still prone to fatigue and I am moving slowly, but I am moving. I spend my time on the ever present "house" projects that abound. I am also actively working in my glass studio downstairs on a commission that I expect to finish later next week. This is good.

Tonight, we are off to dinner and a play. Tomorrow maybe a little live music. Last night, we took my daughter down to a local pub for the weekly celtic jam so she could get out and have something to do. I bought a pitcher of beer and no one seemed too concerned that she wound up with a glass or two.

The weather here has finally gotten to the point where we can sit out on the deck without jackets and long pants. Today, we bought two large planter pots and two honey suckle plants for them with the hope that the honeysuckle will make its way up to the trellis and give us and the humming birds something to look at. Tomorrow, we will plant the hops down below in the ground, but it will take years before they reach us up here. Until then, the honeysuckle will have to do.

Well, that enough for now. I wanted to let you know that I am free and doing well. Thanks for all of your good wishes. I know they helped me during my dark hours. Ta ta.

Monday, June 08, 2009

Day Ten

It is quarter to nine in the morning and I have endured my morning lab stab (5:30 AM), vitals (5:40 AM), questions about my various excretions (5:45 AM), my initial morning drugs (1 IV, 2 pills, 6:00 AM), morning shift change conference (6:15 AM), short snooze, breakfast tray arrival (6:45 AM), eat while listening to NPR, first doc conference (7:30 AM), arrival of home made coffee and morning papers (thanks M, 7:45 AM), read and visit over coffee, second doc conference (8:30 AM), second round of morning meds (8:45 AM), nebulizer treatment (8:55 AM), and now quiet as I sit propped up in bed with laptop in it's named spot, writing and looking out the window directly in front of me at a quintessential Duluth day where all is gray and whitecaps.

I get to go home today.

I imagine that my morning will go something like this: shower and fresh gown (no real clothes here), finish reading papers, maybe a walk to the cafeteria for more coffee while waiting for discharge orders to be written. These orders will be volumnuous, full of prescriptions, schedules and followup appointments. My primary physician will have to return to the hospital to sign off on these - probably over the noon time.

In the meantime, I will sit, and think, and look out the window at one of the reasons why I wanted to move back here in the first place, and write.

First, the lake.

If you have never seen it, it is difficult to understand the emensity of it all. It is a vast and ancient thing that rules the weather for this part of the land. Its moods and natures shape the lives of those who live upon her shores. I grew up breathing the mist lifted from the tops of the white spume that crashed upon the broken shoulders of the mountain range that defines the northern shore of this inland sea, a range that at one time was mighty as the Himilayias are now, but that have been worn down by time and epochs and glaciers and rain and the ceaseless pounding of the waves.

I have sailed its expanses, swum along its edges, known its absolute indifference to my existence, and have learned the meaning of terror while caught in its fury. This inland sea became a part of me that has called to me whenever I have been away from it.

Now, I sit seven floors up in a hospital room looking out of a picture window at an expanse of gray, flecked with whitecaps that mark seven to eight foot waves rolling in from the northeast. If I could see further to my right, I would see them flinging themselves upon the breakwalls and riff-raff that line the shore of Duluth's waterfront. Only the most hearty and foolish will be walking the shoreline boardwalk today and they had better be well dressed for it.

I cannot see the Wisconsin shore which I know is directly in front of me across the narrow expanse of water. The sky, a slightly lighter shade of gray meets the water in a zone that is ambiguous - impossible to tell where the elements finally separate. I am anxious to set my feet outside of this neutral cocoon that has sheltered me these last ten days. I want to feel the wind driven rain on my face. I want to hear the boom of the waves as they repeatedly attempt to turn 100 thousand ton chunks of ancient basault into tiny grains of sand. I want to smell the spume.

Of course, the battle that has gone on here, high above the roiling waters, has not been without its adventures and the outcome is not yet known for sure. One week ago, I was closer to death than I have been in many years. I did not tell anyone of my suspicions. After all, it was only some fevers and coughing, but I knew. I knew that if we did not find a new mix of hokum-pokum, my lungs would continue to fill and I would drown in a lake of my own. One without any of the poetry of the giant one outside my window.

Foretunately, I was being cared for by some very wise and experienced shamans who did find that special combination of things that reversed the course of my illness and allowed me to sit here today writing this to you. One of the things that was done however leaves a large question mark smack dab in front of me. We stopped the experimental chemo drug I was doing as part of the Mayo trial. The chemo drug that reversed the relentless march of my Non-Hodgkins Lymphoma. The drug that has allowed me to live again. What will this mean? The answer to that is unknown to me at this point.

Once I am home, comfortably ensconced in an overstuffed chair or pet-hairy sofa, with all of my prescription orders in front of me, I will call the Mayo and ask "what's next." I imagine that I will travel down there for a conference with all of my reports and analysese from the last ten days (or maybe not if the outcome is a simple one). What ever happens, I have dodged a nearby bullet and am profoundly greatful. Nothing makes life seem so sweet as to feel the sticky hand of death on the back of your neck.

So, here I sit looking out on weather that I am sure is causing great grumbling and knashing of teeth because it is cold, windy, rainy and not the kind of soft spring day we all wish for, but for me, it is a great day and I am chomping at the bit to get out into it.

Best to you all.

Sunday, June 07, 2009

Day Nine

I received an upgrade in room last night. Someone came in to the hospital that needed nearly constant observation and as I have continued to improve, they moved me down to the end of the hall next to the solarium where I now enjoy a nice view of Lake Superior. Suits me.

I am getting better every day. One week ago, I was a sick little puppy. Today, I still have a little congestion in my lungs and need to cough up some junk once in a while, but no where like before. I feel almost back. It will take a bit longer to recover fully. My hemoglobin is still below standard so I will be low energy and tire easily. I will be short of breath walking uphill - stuff like that, but I should be able to go home tomorrow and finish my recovery at home.

I have had lots of company over my stay here which has made a huge difference in how all of this has gone. I can't imagine what this last week would have been like without the support of my friends and family who have stopped in and helped me spend the time between the taking of vital signs, the lab stabs, the chest x-rays, the lucid periods between the dreams and hallucinations.

Then there is Marisa who has not only been with me in the hospital for hours at a time, but also holding down the fort at home making sure the animals get fed and that there is food either on the table or in the fridge for the kids as they come and go. I don't know what I would have done without her help. Thank you, M.

I am anxious to get out of here for so many reasons. I have work to do and obligations to meet. I feel forced into this frozen state of non-activity and it is very frustrating. I hope to finish setting up the glass studio in the basement so I can get going on the job I have in front of me. Then there is the always present need to keep unpacking (and the accompanying need to find storage locations for the stuff still in the boxes). Slow, slow, slow.

Well, enough for now. I'll let you know if I get sprung tomorrow.

Friday, June 05, 2009

Day Seven

Get me out of here.

It's hard to separate the days from the events that occur in them. Same bed. Same wall to stare at. Same gowns with their democratic indignity. Same shit food.

On the other hand, the staff is for the most part wonderful. My nurse last night (3-12) would be an exception. It wasn't that he was uncaring, but that he was an airhead. He would set off to get me a med and never return. He came in to review my evening pill fest and started naming off all off these drugs that I didn't recognize saying that we would be starting them tonight then. I asked him if he was looking at the right file on the computer. Opps, wrong guy.

I had to help him with several IV issues as well. It was very strange. Early in the evening, a disruptive patient came in with a security detail and the whole staff was in a tizzy. At the time, I was about seven hours into a twelve hour bag of immunoglobulins which required someone to check my vitals (BP, Temp, Pulse, etc.) every thirty minutes. It didn't look like it was going to work so well. Too many readings were getting skipped, so I started charting them myself on the half hour. Easy to do with these little digital BP units. They are an all-in-one unit and display the data for you.

So, for the next 5 hours, I dutifully took my own vitals and wrote them down in the chart paper left for that purpose. I want a discount on my bill for that.

I am feeling better and the pertenant markers the shamens are watching indicate that I am recovering from my peak of lunacy. They are not ready to let me go just quite yet though. Looks like I am here until Monday at least. And the worst thing about getting better is that I am getting super bored. When I had the good fevers and the morphine pump, life here was good, but now, all I want is to get away and run (well, run isn't very appropriate since I get winded climbing back in bed after taking a leak).

I think I'll start watching prison break movies over the weekend.

Tuesday, June 02, 2009

Freedom Denied

I thought that freedom might be mine after having a fever free night, alas, Dr. Lung #2 (not to be confused the the charles addams Dr. Lung #1) came in to say that yesterday's bronchoscopy didn't show any sign of lung cancer, migrating lymphoma, hefalumps, or any other stuff like that. What they did find was good old common asshole bugs like staph and strep. The problem is that they are proving resistant to the course of action we are taking against them. Sounds like we will give it one more day and then try other things - like shoving hospital food down my windpipe.

I bet they would be gone with the first application of fruit compote delight. This stuff is totally toxic. Even the staff admits it as most of them do bag lunches. I actually ate one "thing" after two days with no solid food. That was the last thing though. Last night, my GF smuggled in some Thai spring rolls with wonderful peanut sauce.

I always amazes me that organizations in business to heal continue to poison their clientele daily. This morning, I received my toxic tray while I was waiting for the aforementioned GF who was bringing fresh brewed coffee. I looked at the suspiciously yellow scrambled eggs, the toast from 2000 BC, the orange juice that was squeegeed off the processing floor, and the inevitable mug of coffee. The only thing I could stomach was the OJ and a fork full of adequately chilled eggs. Not seeing GF yet, I uncorked the coffee and took a slug.

Now for a group that couldn't deliver hot food if the world depended on had somehow, just this once this morning, delivered a substance that had been scraped directly from the surface of the sun. My mouth parts were immediately paralyzed, allowing the remainder of the hot acid to work it's way slowly down my throat. I sat in horror as steam and noxious vapors issued forth in front of my eyes, or as much of that as could be seen due to the blinding jets of tears that shot from my eyes a moment before.

Time froze while I pondered my options and took action. My hand shot out, grasped the pitcher of shaved ice and water, and hurled it at my face and gaping mouth. Dear Reader, this is a place where it should be recorded that my plan of action worked as inspired, but I must confess that I did not consider all of the possible outcomes of my actions. Instead of quenching the fire burning within me, the contents of the pitcher made a slightly lower landing which introduced a whole separate set of options for me to consider.

All of this before breakfast. Things had to get better.

The news of the day consisted of the above lung-look, getting unhooked from my IV pump (lost the morphine drip however), allowing me to walk these hallowed halls without trailing a steel shadow. This cause for celebration and I set off with my current adult visitor to explore (slowly, very slowly) the hospital. Little did we know there would be hell to pay.

More tomorrow....