Archive for October, 2008

expectation & reprieve

Posted in cancer, Cancer Life, testicular cancer with tags , , , , , , on October 27, 2008 by lawler

There are always blessings hidden here and there in a life. Sometimes such little blessings stand out, and we are able to recognize them for what they are. In the normal course of life, such things are usually visible through the fog of our lives because they are exceptional — the car accident narrowly avoided, the perfect wedding day though the meteorologist forecasted rain. In times of unusual struggle, however, it’s a bit easier to spot them.

Although I know that going to Indianapolis for treatment is the best decision that Dawn and I could make given the evidence before us, it’s not an easy one to swallow. I don’t like the idea of being holed up in a hospital for the better part of two months, and Dawn is (no better word) dreading those months as well, knowing that they will mean a lonely house, and more six hour driving trips than any of us would care to take in any two month period. The little nugget of relief, the blessing, comes at the front end. You see, I was originally scheduled to take my second round of chemo this week. It also happens to be the time when three (yes, three now) of my brothers will be coming for a visit — at the end of the week that would have under chemo conditions been some of the worst patches for me. But now, because I am not scheduled to begin the High Dose Chemotherapy until the following week (Nov. 3), I can enjoy this week with a degree of normalcy and still be well enough to have a good time with my brothers when they are here (and put them to work in our new house!).

A reprieve. A blessing. Whatever you want to call it, it won’t go unappreciated by me.

And now, a word from Mike on EXPECTATIONS (which has something or other to do with blessings and reprieves perhaps)…

Aside from my upbringing as a Roman Catholic (a faith I abandoned as soon as I could wrest free of it), the only religion I have ever looked at seriously has been Buddhism. I am, by no means, anything approaching an expert on the ideas and teachings of Buddhism, but I’ve gleaned bits and pieces of the faith that seem to have a pretty good grasp on how life unfolds — or at least how I’ve observed it unfolding.

The most interesting for me are The Four Noble Truths. They go something like this (and please, if you’re a Buddhist or know something about this, feel free to enlighten me): Mostly life is suffering. Suffering is bad. Desire causes suffering (among other things). The more desire you eliminate, the more suffering you eliminate. Therefore, with less desire, you will suffer less. I’ve also read something that I find to be fairly accurate for my life in all of this suffering/desire stuff. A big part of desire are our expectations — our expectations of ourselves, of life, of friends, of family, of strangers on the street (or drivers, coworkers, teachers, and on and on — everyone). We go into every interaction with other living creatures (yes, not just humans, even our friendly, fluffy cats) with expectations. We expect them to treat us a certain way, to say certain things, and not say certain other things, we expect them to live in accordance with our expectations of them. And they expect the same from us, if not more.

In my adult life, I’ve learned a few things about my fellow humans (and myself) that have yet to be proven wrong, and this is one of them: our expectations are usually the reason for trouble in all relationships, be they with family, lovers, friends, colleauges, or otherwise. We expect, they expect. And when expectations don’t match up — or worse, fail to come anywhere near the mark — trouble is afoot.

(Maybe some day I’ll write something about another fundamental truth about human nature that I learned during my years as a cab driver in Portland, Oregon, but that’s another story.)

To one degree or another, we are all guilty of this — and we all have the power to make it better, to lessen it. How? Expect less from people. Embrace them for who they are, knowing that we can’t possibly get along, befriend, love, or even like, every person we encounter in our lives. But recognize that we each have something to offer, and stop expecting them to live their lives in a way that meets with your expectations of them. As for friends, family, and other loved ones, stop expecting them to behave in certain ways. Expect them to call at certain intervals? Stop. Expect them to say the right thing at the right time, or pay you back? Stop. Expect them to love you unconditionally? Oh man, you need to let that one go.

So, where did this sermon come from? Well, it came from a few places. First, it came from a rough “breakdown” that I had recently — remember my post on that? In many ways, I think my breakdown, replete with sobbing, yelling, and an overall cathartic release of anger, was brought about not by my own expectations, but by those that belonged to someone else. Let’s just say that push came to shove and it was unpleasant in the extreme (and no, it wasn’t an issue between Dawn and I — but in order to save feelings, I’d rather not drag the whole affair to far out into the open and so am concealing that little nugget as best I can).

But, my thinking about expectations goes beyond that episode too. My own expectations are, after all, the precursors to such thoughts as “this is unfair,” “why me?” and “I can’t wait to get back to normal life.” I expected (foolishly) many things in the past year. Namely, I expected to not have cancer. I also expected it to be an easy fix. When it wasn’t, I expected to be cured after my initial treatment. I expected it to be gone forever. And now? Now I don’t know what to expect — and maybe that’s why I’m writing this in the first place.

Indiana

Posted in cancer, Cancer Life, testicular cancer with tags , , , , on October 22, 2008 by lawler

Today was a bit hectic for me, so I’m just now getting around to writing a blog entry to let everyone know what happened yesterday at Indiana University. I started another post, but have abandoned it for the sake of time and brevity.

In a nutshell…

  • Dawn and I met with Dr. Williams at IU yesterday morning. He told us in a series of discussions that:
  1. He and Dr. Einhorn (the two of them are the leading experts on testicular cancer in the country) agree that I should undergo High Dose Chemotherapy with Stem Cell Support.
  2. I should receive the treatment at Indiana University because they have done it more than anyone, and helped develop the treatment.
  3. I need to start as soon as possible, which for me means November 3.
  4. I definitely (Dr. Williams: “one hundred percent”) need surgery after treatment. He told me to plan on having that done at IU as well, sometime in January after I recover from the High Dose Chemo (HDC).
  • The High Dose Chemo treatments require me to stay in Indianapolis for the better part of up to eight weeks.
  • I will receive two rounds of HDC, each lasting about three weeks, with one week to ten days off in between (fortunately, that will be Thanksgiving week!)
  • Statistically, I was told that the cure rate at recurrence is typically about 70% — however, Dr. Williams thinks that though I am a “complicated patient,” my chances are better than that. He explained that most men he treats have the disease spread more throughout their bodies, which makes it harder to treat. So, I’m grateful for that.

Of course, there are a lot more details than that, but I wanted to get the basics out to everyone. I am planning on doing the treatment in-patient at IU because they would only let me do out-patient if I had a full-time caregiver to stay with me in lodging in Indianapolis. Since I have to take a leave of absence from CTM, we can’t afford for Dawn to come down and stay the entire time with me.

So, there you have it. I’m sorry this is such a bare bones post. Rest assured, I will write more when I have time.

Love to all.

breakdown

Posted in cancer, Cancer Life, testicular cancer with tags , , , , on October 20, 2008 by lawler

“If you could do it, I suppose, it would be a good idea to live your life in a straight line–starting, say, in the Dark Wood of Error, and proceeding by logical steps through Hell and Purgatory and into Heaven. Or you could take the King’s Highway past appropriately-named snares and dangers, and finally cross the River of Death and enter the Celestial City. But that is not the way I have done it, so far. I am a pilgrim, but my pilgrimage has been wandering and unmarked. Often what has looked like a straight line to me has been a circle or a doubling back. I have been in the Dark Wood of Error any number of times. I have known something of Hell, Purgatory, and Heaven, but not always in that order. The names of many snares and dangers have been made known to me, but I have seen them only in looking back. Often I have not known where I was going until I was already there. I have had my share of desires and goals, but my life has come to me or I have gone to it mainly by way of mistakes and surprises. Often mistakes have led to good surprises. Often my fairest hopes have rested on bad mistakes. Very little that has happened to me has happened as I foresaw or planned. I am an ignorant pilgrim, crossing a dark valley.”

I read the above passage this morning, after trying my damnedest to meditate and clear my head after a pretty emotionally difficult Sunday. Without delving too deeply into the personal stuff that brought about my breakdown — there really seems no other word for it, so it is probably as visceral and upsetting as you imagine it — yesterday evening, I thought that Wendell Berry’s Jayber Crow expressed something that I was feeling in that paragraph. And so, there it is.

But then again, Paul Simon has a great line somewhere on his album Graceland that needs applying too:

I said breakdowns come and breakdowns go/

But what are you gonna do about it?

That’s what I’d like to know.

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Today, after meeting with a doctor at UW Hospital that specializes in High Dose Chemo with stem cell support this afternoon, we are heading to Indianapolis. One of my oldest and closest friends, Tara (whom I have known now for twenty years!) will be coming up from Cincinnati to stay with us and be there if we need someone to prop us up a little for our visit on Tuesday morning with Dr. Stephen Williams of Indiana University.

I will have a new posting up about the progress and what we have learned sometime on Wednesday. Please be patient. I understand that there are many of you out there who care what happens to me and Dawn through all of this — but I ask you to bear with us, recognize that we are only human and do the best we can to reach out. Sometimes it’s just easier to stay in and draw the shades. And you must understand that, no?

Anyway, thanks again to all for the love, support, kindness, words of encouragement, visits, food, calls, emails, cards, notes, letters, prayers, boxes of love, and everything that you have sent our way…

Good News Doesn’t Always Sleep In

Posted in Cancer Life on October 16, 2008 by lawler

Phone ringing just after 7PM here in Madison. Call identified as Dean Oncology, so I pick up right away. It’s Kim, Dr. Arbaje’s nurse.

“We got you’re results from your CT scan today, Mike, and I just spoke with Dr. Arbaje,” she said. And then: “You are responding to the chemo, so we’re good there.”

Enough said? Dawn did some crying, and then some dancing, and then she ran out the door to tell our neighbors Lydia and John. And then she danced a lot more.

Neighbor

Posted in cancer, Cancer Life, testicular cancer with tags , , on October 15, 2008 by lawler

I recently picked up a book that I lost at one point and so lost the momentum in reading it. I was lying in bed a couple of nights ago, feeling very tired, but unable to sleep and thought, “I need to find a good book.” I carefully got myself out of bed so as not to disturb Dawn and walked to the big bookcase in our living room I made for Dawn last Christmas. It holds all of the literature that we’ve unpacked so far. I was glad that Dawn had taken the time to alphabetize its contents because it made it very easy to find the book I was looking for: Jayber Crow, by Wendell Berry.

Berry is the definition of a “man of letters” in my opinion and can write in a way that I don’t think all of the teaching in the world could lead most of us to. He is a poet, a novelist, an essayist, and man of ideas that I love. He seems to be able to write as ably about sustainable agriculture as he does about the memories of a simple life, as in Jayber Crow.

But the reason I bring him up now is a quote of his that I read from a 2006 interview with him just today:

“Once you confess to yourself that you need other people, then you’re in a position to look around your neighborhood and see how neighborly it is, starting with how neighborly you are yourself.”

The line is so rich, laden with the bare truths of life that many of us never take the time to learn.

When I read it, it made me think of some things that Dawn and I talked about today — things that come up when you find yourself in a situation like this. You talk about (not) taking things for granted, about accepting, living in the moment, you talk about how no matter what happens next all you can do is do the best you can and live on. And sometimes, you talk about your fears, and words that can sound disheartening to an outsider crop up. Words like “nightmare” and “unfair.”

The thing is, if cancer has taught me a damn thing, it’s taught me about all of the good that keeps going on in the world all around you, whether a crucial part of it is falling down flat or not. And though we’ve only lived in our new house for two months, our nearby neighbors have proven themselves yet another example of how one’s community sort of swells up around you in times of need. Several of our real-life neighbors have proven decent, helpful, friendly people that are nice to have around, but a few of them stand out above the rest.

Gene

Gene has lived in the house two doors down toward the bay for fifty some years. He’s retired and in his own words likes to have things to keep him busy. One day, after we’d lived here for only a couple of weeks I drove into our driveway and noticed Gene in our backyard. My first thought was, of course, “Oh no, we’ve got one of those neighbors.” Such a cynic. It turns out, Gene had told Dawn the night before that he’d be over (totally unsolicited) the next day to pack up all the yard debris we created in trying to clear up our rather ragged back yard. He trimmed everything down, packed it up in his van, and hauled it off to the city station for yard waste. He’s been doing stuff like that ever since.

Lydia

Lydia is a breast cancer survivor that lives across the street and one house over from us in one of the nicest little houses on our street. She has been welcoming since the day we closed on the house and showed up to have a look around. Since I have been sick she has had us over for a night of games, cooked us food, brought us things to plant, and is always there with a kind word and a smile. She’s also one of three neighbors that have let us take showers in their homes — since we’ve never ever had one of our own in this house!

John

John is one of these people that shows up in your life one day and it feels as though he’s been there all along — perhaps living far off for a time, but always there. It’s kind of strange how well we get along with John, a single freshly retired (old hippy, I guess you’d say) guy. He has a tremendous sense of humor, and has never hesitated to make us welcome in his home, cooking us dinner, making us food and bringing it over, even giving me a couple of rides to the doctor since I went back into treatment.

Maybe I shouldn’t have singled out three specific neighbors the way I did, but I wanted to be sure to thank them for the kinds of friends they have been to Dawn and me in the last two months, and especially in the last three weeks or so.

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I’d also like to take this opportunity to thank my sister-in-law Cara for the kind entry she posted on her blog that included some very nice things about me. It was also the subject of some discussion today, and made me feel very good.

Post from Dawn

Posted in Cancer Life on October 12, 2008 by lawler

I thought I should let everyone know how Mike is doing, since he doesn’t have the energy to do so himself at the moment.  This first round of chemo hit him very hard. He has been having difficulties keeping food down, his nausea is pretty awful, his whole body aches (partially because of the toxic drugs, and partially because of the Nulasta shot they gave him on Saturday at the hospital to stimulate his white blood cell production), and his strength has been sapped completely.  He needs all the positive energy he can get right now, because he feels incredibly beaten down, both physically and emotionally.  I know he will get through this, and so does he, but it doesn’t really make the present situation any easier.  Thanks so much to all of you for all the love, support, prayers, thoughts, cards, food, bathroom remodeling, tree removal, showers, company, and anything else that I may have accidentally left out (which doesn’t make it any less important!).

Dawn

It’s Happening To You

Posted in cancer, Cancer Life, testicular cancer with tags , , , , , on October 8, 2008 by lawler

At about 3 o’clock this morning, as I sat in the Emergency Room of St. Mary’s Hospital, waiting for a nurse to bring me my discharge paperwork, I put my iPod on and an old John Prine song called (take a guess) “It’s Happening To You” came on. The song, of course, is a general lost love song, but the simplicity of Prine singing “Oh yes, it’s true, it’s happening to you” struck me in that moment as something that applied to my life. That’s been the most trying part of the past few weeks: is this really happening? Didn’t I do my time, didn’t I pay my penance already?

But wait, you ask — what was I doing in the ER? Oh yeah, that’s a funny (not) story. You see, the first day of my treatments is supposed to be a 24-hour infusion of the drug Taxol. To do this they send me home with a fancy pump that slowly moves the chemo to my insides. So, everything was going just fine until about midnight, just as I was changing into my pajamas. The pump started alarming, indicating that there was air in the line. I tried to reset the alarm a few times, and then called the oncology clinic line and got the on-call doctor on the phone.

He was generally unhelpful, and basically told me that I would have to wait until the morning when my chemo nurses could purge the line and start the pump again. I listened to him as a dutiful patient should, and followed his advice for about a half hour. The problem with waiting until morning was that it would set back the infusion by at least 8 hours, meaning that my treatments would be more than likely bumped back another day — putting me in the hospital on Sunday for a treatment too. There are lot of reasons this was a bad idea, I thought as I lie in bed trying to decide if I should turn the pump off completely or try to get some sleep with a piercing alarm that went off about every three minutes. One of the biggest problems with setting my treatment back, or delaying the other two drugs starting, was the urgency that Dr. Arbaje conveyed to me about starting treatment right away. Aside from that, we are also taking blood work and having a CT scan very soon after my first week in order to assess my responsiveness to the TIP protocol. This assessment is critical to the decisions we will need to make about my treatment. It seemed like a risk to delay at all for such a relatively minor problem with a piece of equipment.

So, I got up, got dressed, packed the pump up in my clinic-issued fanny pack, and drove the two minutes to St. Mary’s. I got there at about one o’clock, and left about quarter after three. Most of that time was spent trying to sleep on a souped up gurney in a private room. The nurse had never seen the pump that I had, nor had the doctor. We simply reset the pump until it started working, while making sure there were not dangerous air bubbles in the line.

I went home and turned the light off at four o’clock. This morning, after the pump seemed to be empty, I headed for the chemo ward, arriving at about 10:30. I’ve been here now for four hours receiving my Cisplatin and Ifosfamide — the drugs I will receive daily for the next four days, as well as other supporting drugs. Fortunately, it does not look like I will be receiving steroids during this treatment, which is a relief, since the steroid side effects of my first chemo treatments last year were no fun.

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Indiana here we come…

We have an appointment to see Dr. Stephen Williams at Indiana University in Indianapolis in about two weeks. We will meet with him the day after we meet with Dr. Arbaje to evaluate the efficacy of my first week of chemo. At this point, Dr. Williams now appears to be within our insurance companies network, which is better than what we originally thought/were told. Perhaps we won’t have to pay as much out-of-pocket to receive treatment from the leaders in testicular cancer research (would this be a good spot to remind those of you still on the fence why you should VOTE FOR BARACK OBAMA? Perhaps.).

Again, thank you all for your love, support, mojo, prayers, vibes, energy, thoughts, words, (lotsa) food, and all-around “being there.” It means the world to us.