Archive for October, 2007

a swollen hand and happy halloween

Posted in Cancer Life on October 31, 2007 by lawler

On Monday, I saw my oncologist, Dr. Arbaje. Whenever he asks me how things are going, I always seem to have some sort of new, quirky ailment to share with him. On this day, Dawn and I noticed as we sat in the examining room waiting for him that my right hand was noticeably swollen. A new side effect. When we noticed it, I told Dawn, “He’s just going to say it’s a side effect and not to worry about it.” Which is exactly what he did. Sometimes I think I could walk in there with my head half off my body, and the nurses and doctors would nod knowingly and say, “ah, yes, that happens sometimes.”

The affliction is somewhat hard to ascertain from this photo, but if you compare my ring and middle fingers on each hand, you can kind of tell that the right hand is swollen: swollen hand

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I’ve lost count of the needle pokes I’ve had to endure over the last two months, and regret that I never started a running total (as I frequently thought about doing in the beginning) — it just seemed too morbid at the time, and perhaps it would’ve been. On Monday it took three tries to get the IV in, and I’ve learned the signs of missed attempt. Namely, it hurts a lot more when they miss. Then, because of the trouble they had, the nurses elected to leave my IV in overnight, which is simultaneously nerve-wracking and relieving. I’m assuming the reasons for that are self-evident.

Though today they got the IV in in one poke (thanks to “one stick Peg”), they are once again going to leave it in. They call it a Hep-Lock. I’m not sure that my spelling is correct there or not, but that’s the nurse-speak. As in, “Yeah, Mike, and we’ll just Hep-Lock that again today, okay?”

Okay, I say — why not? Hep-Lock away.

Today, “one stick Peg” told Dawn and I about a patient who actually comes in every week day for five weeks straight for treatment. I couldn’t believe it. I thought I had it rough (and compared to many, I do) — but man oh man, five weeks straight. She also said that part of the chemo for this leukemia patient’s treatment are doses of arsenic. That put some things in perspective, but I’m still feeling sorry for myself, I must admit. I’m just so close to the end, that I can’t stand it.

Thanks to everyone who is helping me through it in one way or another. Yesterday, the social worker here at the chemo ward came in to visit with Dawn and I and said something like, “I’m sure this experience has brought the two of you closer,” to which I agreed immediately. It’s done more than that for me — it has completely removed any sense of entitlement, any sense of taking my wife for granted. I thank her every day for being here and supporting me. There are others too, of course. We are both very fortunate to have Dawn’s parents Georgia and Hartmut so close. Georgia, for instance, has been making the trip into Madison every day this week to pick me up from my chemo and take me home. This saves Dawn from having to ride a bike to work each day after dropping me off, holding my hand through the rough spots, and then popping off to take care of a bunch of preschoolers.

But even with all of the help and support we get, I still get pretty lonely during the roughest times of the treatment, since I have no energy to do much of anything except write a small bit, watch tv, read here and there, and listen to music. I have been fantasizing a lot about a trip we hope to take in the spring when all of this cancer nonsense has been left behind in a locked drawer marked “remission.” We hope to make a trip to the great Northwest to visit friends and family, and along the way do some worthwhile sightseeing (The Badlands, Yellowstone, the Grand Tetons, etc). It is such a trip that sounds so sweet to me now…Something to look forward to.

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I asked my nurse today if she liked my Halloween costume. “hmm..what is it?” she asked. “I’m a cancer patient,” I said. She replied “yeah, and I’m nurse.”

Happy Halloween.

self portrait – October

Posted in Cancer Life on October 29, 2007 by lawler

A couple of people have mentioned how my blog posts have begun to thin out considerably, and the only real explanation I have for that is my job with CTM. Last week I was very busy trying to get our new shop/storage/rehearsal facility up and running for rehearsals of our winter show (A Christmas Carol) this week. It was, to say the least, quite a chore.

Every once in a while I have a hard time getting the thumbnail of an image to show up in a post — it’s very odd. This is one of those instances.

Since it has been just over a month since my first self portrait, I thought I’d add another to the list. I took about a dozen, and I tried smiling, but this was the best shot I think. I’m sitting in my office at home. The clock on the wall behind me was one that used to hang in my grandparents home in San Diego. I love it because the sound it makes as it ticks reminds me of all the evenings I spent as a kid (and young adult) sleeping in the living room of their small home. The sound has always carried with me. It’s a sensation of peace, warmth, safeness that it brings to mind. At the moment the clock is not wound, and so not making any sound. I don’t know why but I haven’t been able to bring myself to wind it up in the midst of all this. I plan on winding it when the chemo is over.

 

 

self portrait – October

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Today was the first day of my final cycle of chemo too. Things are looking good. All of the blood markers and x-rays indicate that the cancer is nearly wiped out of my body. So, now the hard part is simply enduring the final cycle. Because today is the one day of the cycle that they give me all three of my chemo drugs at once, we’ve started off with a bang, and my energy level and overall feeling of well being have taken a serious nosedive. I’m trying not to dread the next couple of weeks…but I guess I am anyway.

(oh, and happy birthday to my brother Matt!)

back to work

Posted in Cancer Life on October 24, 2007 by lawler

I’ve sat down several times to write a new post in the last few days, and have come up with nothing. Just blank stares at an empty page. This morning I sat up in bed thinking about why I suddenly have nothing (or at least very little) to say on my blog lately. Is there nothing new to report? Or am I tired of reporting on life with cancer?

Maybe it’s a little of both. So, bear with me, and forgive the short post this morning. The thing is, I have to get ready for work soon, or I’m going to be late.

This week is the first week of serious work I’ve done since I was diagnosed, and I’ve been surprised both by my how much energy I’ve had while working and how little I’ve had at the end of the day. The project I’m undertaking this week is huge — I won’t go into the boring details here — and since next week is a full chemo week (the last one!) when I won’t be able to continue the work I’m pushing myself to get a lot done this week.

I’ve always been a hard worker, and (especially in my theater work) have always been able to work very long hours without much trouble. But now my energy level is much lower, and my body more delicate so I’m trying to be careful to not push myself into a premature drop in energy and health.

Now it’s wednesday — hump day — and I find myself feeling the kind of energy that I would normally feel after working a full day. Not a great place to start the day, but I’m committed. It helps me feel less sick, this work thing.

I have to run now. Thanks to all of you for reading, sending cards and gifts, calling, offering love, food, and all kinds of support. Dawn and I would be lost without you.

unpredictability and a thought or two on the supernatural

Posted in Cancer Life on October 18, 2007 by lawler

Perhaps I was foolish to think I could make assumptions about how the chemo would affect me and when the worst times would be. My doctor did his best to explain what sort of patterns might emerge, and as of Tuesday I was confident that in the midst of the second cycle, I had accurately predicted how I would be feeling and when. It was comforting in some ways to convince myself that there would be bad weeks in the middle of each cycle, but that otherwise I would feel mostly normal. Tuesday seemed to be the breaking point, where normalcy was returning to my body (and my mind), and I even went into the CTM offices to attend my first staff meeting and get some actual work done on Wednesday. Unfortunately, the feeling had subsided by that evening, and it seemed I had contracted another (perhaps worse) cold, with lots of hacking coughs and some rather severe joint and muscle pain. In fact, I can honestly say that last night I experienced the worst back pain that I have ever encountered in my life — and I certainly didn’t strain it at work. It was intense.

Just to reassure everyone before I complain too much, I did see my doctor today to discuss all of these new and unexpected symptoms, had another (how many must I endure?) chest x-ray, and overall he seemed pleased. It’s strange to talk to a doctor, list an array of awful symptoms, and have him tell you, “this is how you can expect to feel in the coming weeks.” I’m not used to being a patient, I’m not used to being sick, and all of this has really started to take an emotional and mental toll. I’m prone to breaking down nowadays, and the mental struggle to rise above all of the unusual physical discomfort has grown intense at times.

(Oh man, I have so much to say tonight, but only so much energy. I’ll fit in as much as I can, and thanks for reading.)

Although I did agree to go into the dreaded oncology clinic to see the doctor this morning after speaking with a nurse on the phone about the symptoms I was experiencing, I was determined not to visit the chemo ward to have any fluids administered or blood withdrawn. I was very anxious about that. I’m developing, especially after the rough time I had there on Monday, a true, deep rooted aversion to the place. I told Dawn today, “All of the people there are so nice, so great, and I never want to see them again.” At one point, as I waited for my doctor to call me back, an oncology nurse named Pam who I have worked with a lot noticed me in the waiting room and said, “Oh, come on back Mike, we’ll get you started.” I must have turned pale, because both Dawn and Pam looked a bit frightened by my response. I told her unequivocally that I had no interest in going into the chemo ward, and would do everything in my power to avoid it today. I felt the same way about having more blood drawn, and luckily the doc didn’t feel he needed any. Do I sound like a baby? Sometimes I feel like one, but all of this is quite taxing. It’s all I can muster to show up and take the treatments I’m actually scheduled for, let alone those that are extra.

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*Please, please note: this entry is not intended to offend anyone!

Aside from ear hair, back pain, and general fear, there is another subject that crops up frequently in one’s life when scary words like cancer are floated about. In a word, we could call this subject God. For many of you it is far more complex than that, for others far simpler, and I beg my readers indulgence on this post. I have not shied away from topics such as masturbation, death, love, fear of death, et cetera, here in this blog, and I don’t think it would be right to turn a blind eye to a subject that has come up between so many of us with such urgency in the past several weeks.

Yesterday, from a friend I received the following email, which led me to the decision to write on this topic today:

“The boney arms of death are for Halloween. If this is all a test of faith or faith finding, then find a faith in a force, power, strength, God (god) that is open to you and comforting. We are praying to the one we know for a positive outcome from all of this.”

It might seem odd, but my first thought was, “oh man, I misspelled bony in the blog yesterday.” I thought this because this is an email from a learned man of letters with degrees and such. Of course, email is an informal means of communication, and I am pleased to report that he misspelled it, not I. Does this make me shallow, or does it demonstrate my level of comfort with my lack of faith? I don’t know.

What I do know is that members of my family and many of my friends have put me in their prayers in a very real way, and some (such as the friend quoted above) have made overt suggestions to me that I might pursue a supernatural source of relief and comfort.

I have received from friends and family everything from medallions of Saint Perigrine, to blessing packets from Oroville, India. And believe me I appreciate it all. As I told people when first sharing the news of my cancer who offered to pray for me even though I am a non-believer, “It means something to me, because it means something to you.” And lately I have felt more pressure than ever from folks to look for something (far) outside of myself in my time of duress. But I can’t. I’m sure many of you will share with me all sorts of wisdom in attempts to convince me that I can, but I feel as though to turn to a god or force that I have hitherto not subscribed to or truly believed in would be to compromise my integrity. Perhaps I’m just stubborn, but until it strikes me in a genuine way how can I look to the sky and beg some mercy?

What else to say? I don’t know. For now, I think I’ll leave it at that, and I look forward to your comments and emails on the subject.

ear hair

Posted in Cancer Life on October 18, 2007 by lawler

A recent search engine hit for this blog: “funny pictures of ear hair.” What do you suppose was on that person’s list of things to do? Anyway, the only reason this post is entitled “ear hair” is because I’ve dug deep into the well of clever titles and come up dry today. Also, I have three things to say about ear hair, which seems like a lot. The first I’ve already told you. The second involves last nights edition of the Jim Lehrer News Hour:

Georgia came into town Tuesday to spend the day with me since Dawn was not going to be around all day or night (she worked and had agreed to help out a friend by sitting in on an Orchestral rehearsal of Mahler’s first symphony in Beloit, which is about 50 miles from here, meaning she got home very late), and one of the last things we did before she hopped back in her Corrolla and headed home was watch the News Hour. It was the second segment, I think, a piece they called Landmark Nuclear Agreement Between India, U.S. in Danger of Collapse.

They ran through their regular format, first having a report filed by a correspondent and then returning to the studio to discuss the issue with two experts. One of the experts, Arjun Makhijani, of the Institute for Energy and Environmental Research, had a serious ear hair problem — I mean, if you consider a thick mane of dark hair oozing from each ear a problem — that Georgia could not stop laughing about. She spent the first half of the discussion trying to convince herself that the hair was some sort of ear piece listening device he was wearing, since most of the shots only showed us his left side. But, with the confirmation of at least two right side shots, it was clear that ear hair was the culprit. Why am I writing about this? Two reasons. First, it made us laugh, and when you can laugh while watching two very serious-minded talking heads discuss nuclear proliferation in one of the world’s most populous nations, that’s a pretty good sign that there’s still some joy left in the world. Second, I have a mild ear hair problem myself, which leads me to the third thing I have to say on the topic…

Some day when I’m in a good mood I’d like someone (a scientist or doctor of some sort I presume) to explain to me why with a head that is fully bald, my fast growing beard non-existent, and much of the rest of my body hair gone or noticeably thinned do my ear hairs continue to sprout? Why, oh why, of all the hair I would wish away if I could, why, someone tell me please, why does this evil brand of folicle flourish?

“They say the darkest hour is right before the dawn”

Posted in Cancer Life on October 16, 2007 by lawler

The header for today’s entry is a line from one of my favorite Dylan tunes called Meet Me in the Morning from Blood on the Tracks. It’s not an earthshattering tune or anything, but the line has popped up in my head these days, as I’ve been struggling through the worst the second cycle has dealt me over the last several days.

Let’s face it, I’ve been a bit emotional the past couple of days. I think I hit rock bottom yesterday during my chemo treatment. One of the nurses-in-training looked at me at one point, her eyes wide with disbelief, and said, “oh my, are you okay?” I’m sure she’ll learn not to alarm patients that way in the future, but suffice it to say I wasn’t doing well. They kept me in the chair over twice as long as they normally would for my second week, pumping me full of antidotes to the toxins they’d already filled me up with. My doctor even stopped by, with some words of encouragement: “Remember,” he said, “we’re going to cure you. Just keep your eye on the goal.”

But that can be very difficult to do. Last night the fever and chills set in as I was waiting for Dawn to come home, and as I lie in bed shaking more violently than I ever have, I wondered desperately if I would be headed to the hospital before the night was through. Fortunately, the fever never got out of hand, and we managed to rein it in, and I returned to my normal misery. At times like that the thing that strikes me most is how desperate I am for normalcy, and how much I (we) take it for granted in our day to day lives. It seems like such a given, but believe me when I’m in the throes of my own little chemo nightmare, it seems like heaven on earth.

I wonder sometimes how my superficial mentionings of hair loss and needle pokes and such must appear as what I think this cancer thing is all about. It isn’t. They are things to tell, things to share with all of you who aren’t here to see the day to day struggles and weirdnesses of life with cancer, life with chemotherapy.

But it isn’t the needles and the shedding of hair that keep me up at night. It isn’t such relatively small consequences of cancer treatment — not the nausea, the fatigue, or any of that. Those things may keep my body up at night, but they don’t weigh on my mind the way the much bigger questions do.

I suppose it is because in times like these, one wonders what he would most rather be doing in life. I suppose one could say, “well, just about anything,” but that’s not the nature of the exercise my mind is attempting to coax me into. It’s more along the lines of, “it looks like you’re going to luck out with this one, Lawler, but maybe next time you won’t — so, what is it you really want — what is it you really need — in life?” Such questions of the future have overtaken the silly but inevitable ones of the present, such as the classic, “why me?” — Tara’s pointed answer of “why not?” put an end to that one for me. Besides, if not me, than who? No, I’d just as soon it be me to endure this as anyone else. It’s fruitless to wonder if there was something I could have done differently, some meal I could have skipped (or added), some situation I should have avoided, in that I might have kept my cancer at bay. It’s too late for that, and only occasionally do I wonder if those around me who have not had cancer look at me as a bit of damaged goods, that must have missed something along the way that they managed to grasp. No, such musings are useless. And I’ve already staggered through them the best I could.

So, that leaves me with dreams of the future, and it gives the dreams an added shot of urgency that they perhaps have yet to contain. When my dad died, my mortality jumped up in front of me and began flailing its bony arms, forcing me to look the idea of death in the eye — or, at least as close to the eye as I could manage. But now, it’s come much closer to my own front door, invited itself in, and begun asking more personal questions.

I haven’t found the right answers to give yet. I’m not sure what they are. There are so many possibilities.

Dawn

Posted in Cancer Life with tags , on October 10, 2007 by lawler

This entry is devoted to Dawn.

Her name pops up in many of my posts, for sure, and I pointed out to her the other day that many of you mention her strength and resolve in your comments, but I feel like she deserves a post all her own.

At the moment Dawn is working several different jobs. She works about 30 hours a week as an after-school teacher at a very cool preschool called Preschool of the Arts (PSA); she finished her last weekend as a gift shop employee at American Players Theatre (APT) recently (about an hour commute from Madison), and she is also teaching private flute lessons a couple of days a week at both the Monroe Street Fine Arts Center, and the Aboretum Music School in Waunakee (about a half hour commute). As if that is not enough, she is also taking a 3.5 hour class one night a week at Madison Area Technical College (MATC) as required by her work at PSA.

What else? Oh yeah, she happens to have a husband at home who has cancer and is going through chemo. So, during the first week of my chemo cycles, she rises early with me, and drives me in my larazepam stupor to the oncology clinic to hold my hand while the nurse pokes me with an IV. Then, since I need a way to get home, she will take her bike (which is on a rack on the back of our car) and rides the half hour or so to work at PSA. In the evening, after chasing three and four year old around all afternoon, she rides her bike home. Unless of course we happen to be talking about Mondays, when I always have a treatment, and Dawn teaches at the Fine Arts Center in the evening — then, she will ride her bike from PSA to teach for a couple of hours, and then ride home.

We have started this week to do some of the chemo trips differently, so that Dawn has more down time, but she still comes with me every morning just to hold my hand and talk to me about happy things.

The other night she found the time to cook up a storm too. She has in the last few days made enough Swiss Chard Minestrone, Cauliflower Cheese Soup, and Vegetable Lasagna with Tofu to fill up a starving army.

What can I say? Dawn is priceless. I’m lucky to have her. The last couple of times I went out to APT I just looked around and thanked the stars that the place existed. How would I ever have found my Dawn if I hadn’t on a whim decided to take a job in middle-of-nowhere Wisconsin with such an out of the way (albeit successful) theater?

This is when we all get down on a knee or two and give thanks for Dawn…no, really.