Surviving is a Journey

Posted in cancer, Cancer Life, testicular cancer with tags , , , , , , , , , on August 31, 2009 by lawler

*I wrote most of this post a couple of weeks ago. It never felt quite right at the time, so I didn’t post it. But…when is my writing ever quite right?

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Satisfied

Oh, I didn’t die

I should be

satisfied.

I survived

It’s good enough for now

Wilco, “Sky Blue Sky”

I heard these lyrics the other day in the car. I’ve heard them before, of course, but sometimes such things stand out — or we hear them in a way that seems as if they should stand out. Anyway, the sentiment sounded about right. Over the last two years life has taken on a new meaning. When someone (preferably a medical doctor of some kind) tells you that you have cancer, you react in a perfectly natural way, asking and acting on a basic question: how do I survive? No time for splitting hairs over the meaning of life, or what you have to live for, really. You just know you want to live and go about finding the path that will take you to the place where life goes on.

Once you’ve found that place things get complicated again. I’ve spent a lot of words here on this blog and elsewhere espousing all sorts of ideas that cancer has either given me or forced me to consider. And now that I’ve emerged cancer-free (for the second time) I find myself struggling a bit to hang on to the ideals that I discovered were of paramount importance to me when I was sick. [The other day I forgot one of the three things I pledged to accomplish this year — what was it again? Get Healthy, successfully launch Wisconsin Story Project, and…and….oh yes, Live Purposefully–I actually had to look on my own blog to remember that third one. Yikes.]

The thing is that it’s not easy living up to your own ideals once you’ve actually had to say to yourself some version of “this will not kill me, I want to live.” Because saying that — if even to yourself — is the same as saying that there is not only something to live for (that’s easy: love, sex, beer, ice cream, et cetera), but that life itself is embraceable, that it’s not only worth it, but that it’s going to be good, that it’s going to bring happiness and something more valuable than what you’ve found in sickness — comfort, perhaps. Contentment.

What follows is a kind of greed. A demand that things be better than ever, and an inability to overlook the areas of life that bring dissatisfaction or somehow don’t live up to the ideal you settled on while sick and proclaiming life so worth living that you would endure a walk across the surface of the moon barefoot — even if it were paved with broken glass.

I’m sure this is a common ailment with a clinical description. No matter. For practical purposes it is simply another area of life to stare down.

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Prognosis: Negative

[sorry, couldn’t resist a bad Seinfeld reference there]

Recently, in our exploration of adoption, I asked my oncologist here in Madison to write a letter for our dossier that stated whether or not I was healthy enough and had a good enough prognosis to be the adoptive father to a child.

This is, in part, what he wrote:

Letter

Dawn and I looked at this brief letter and asked, in a bit of amazement, “Fifty to seventy percent?!?”

“Those aren’t great numbers,” Dawn said.

I haven’t had a chance to ask Dr. Arbaje about this specifically — frankly, I’m unsure how to do so. “Are you sure you aren’t confusing me with more typical bone marrow/stem cell patients,” I might ask, “like those with Leukemia and Lymphoma?” I will see him again in a few weeks, and plan on asking him.

We now have a letter in hand from Dr. Einhorn. His specific expertise in testicular cancer as well as his familiarity with my “difficult” case (difficult is not my word — it has been used about my cancer by more than one expert) has given us a clearer picture of my ability to be an adoptive father, and a much better prognosis:

Einhorn Letter

Right off the bat, this letter attests to a current cure rate of 80% — already higher than Arbaje’s stats. It goes on to state that as of the first anniversary of my first bone marrow transplant, my cure rate sky rockets to 95%. Am I being defensive? Your gawd damned right I am. I have put my trust in the hands of medical professionals to a great degree over the last two years, and I have a funny feeling that one of those people didn’t do his homework. That bothers me.

Perhaps needless to say, this is the letter we have passed on to the adoption folks.

When we asked Dr. Arbaje earlier this month (in person) what he thought of our interest in adoption he said a few things and then asked Dawn point blank, “Are you prepared to be a single mother?”

We were stunned. We have always had the utmost respect and admiration for Dr. Arbaje, but recently feel as though he has lost some of his ability to properly filter. Although we have appreciated his frankness in the past, the latest information coming from him regarding adoption seems overly pessimistic. Is he trying to protect us? Does he believe that we are too optimistic or are simply unprepared for parenthood?

Okay, so how do I wrap this all up? I should be working on a paying writing gig as I finish this up, so why don’t we end on a…

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Happy Note

Wisconsin Story Project and our Cancer Stories production are moving assuredly along. We have tentatively reserved performance dates for May 2010, and I will keep everyone posted on exact performance dates and times very soon! We also hope to have an art exhibit up in the Overture Center that is tied into Cancer Stories that will run much longer…keep you posted on that too. Thank you to everyone who has supported WSP and Cancer Stories in anyway — and if you haven’t shown your support, there is still plenty of time! Go to wisconsinstory.org and have a look around — find out about the company, Cancer Stories, our upcoming podcast series, and check us out on Facebook and Twitter while you’re at it!

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It’s personal, but…

Posted in cancer, Cancer Life, testicular cancer with tags , , , , on June 24, 2009 by lawler

…isn’t all of this writing I’ve been doing on my life with cancer for nearly two years? When I first started writing this blog, I told you that there were two primary reasons for doing so: one, I wanted to be able to continue to focus on a writing project; two, I wanted to keep my friends and family informed about my life, about my illness, about Dawn, et cetera. I had no idea at the time that all of this would drag on for so long — no idea that it would affect my life in so many ways, trickling down as it has into my art, my self-identity, my relationships with friends, family, with Dawn…it goes on and on, and seems to be nearly limitless. The fertility issue is simply the most lasting trickle.

When I first got word last September that my cancer had returned — or recurred — I called one of my oldest and dearest friends and cried on the long distance line that what pissed me off the most about the news was that it meant that I would likely be left infertile. I cried, and told her “I just want to be a dad someday.”

When I have been in treatment I have found myself resenting those of you who are healthy and able to fully live each of the mundane, banal, seemingly uneventful moments of life; now that I have been told that I am infertile, I find myself resenting the young parents I see everywhere, clutching their children to their breast, holding their delicates hands. It’s unfair (obviously) but I think, “why did they get it so easy?” An exercise in self pity, yes.

But, Dawn and I have options. That’s for sure. Almost too many options. We are considering all of them, including using medical technology to create a child. We are also seriously considering adoption. I tell you this because I want to hear from you. I want to know what you have experienced that might shed light on how we proceed with our lives, how we decide to become parents. Tell us something.

My Boys Won’t Swim

Posted in cancer, Cancer Life, testicular cancer with tags , , , on May 24, 2009 by lawler

I’m in Eugene, Oregon this weekend attending a conference/symposium/festival called Earth Matters on Stage. It’s essentially a meeting of we theater artists interested in so-called green theater. It’s been a blast to be here, and it has served to remind me of why I love the theater, and how I hope to contribute as an artist in the future. And really, how I hope to lead my life.

While here, I have had the opportunity to catch up with both old friends and people whom I’ve until recently only known through the written word, or rare phone conversation. My brother Steve also made the trip down from Tacoma, Washington the day I got here to see me, stayed the night with me at the hostel I’m at, and then headed back home on Friday. It was great to see him, as always, and he was sitting with me when I received the following email from my oncologist, Dr. Arbaje:

hi Mike,unfortunately, your sperm count is zero so you would have to use the banking.
keep me posted about the MRI
feel free to use this route.,
Yamil Arbaje, M.D.

Here’s how it looked to me:

unfounouohn YOUR SPERM COUNT IS ZERO lkjlkmlkmvlkerouo lkjloijuou lkmlm
kjhknkln iaoierj MRI
l;iuouone
lkyoum, MD

Should I start over? Okay…

Part I: Say the word, “deaf.”

“You need your ears cleaned!”

Ever heard that from anyone who thought you should’ve heard what they had to say to you? I have. My dad used to say something to that effect, but far more colorfully.

Nearly two years ago, on the same day my primary care physician told me that he thought I had testicular cancer he told me that I needed to have my ears cleaned. Naturally, the cancer took priority and the ears were not thought of again until over a year later when my hearing emerged from high dose chemotherapy treatment in a bad way.

The other day, my local oncologist, Dr. Arbaje, recommended that before I had a hearing test to determine the level of damage I’ve been left with that I have my ears cleaned out professionally. So, I did. It was brief, and the result was gross. I won’t go into that.

My hearing emerged from the cleaning as different, but not better. I had a hearing test immediately following the cleaning, which confirmed that my hearing is impaired, severely so in the higher frequencies.

Both of my ears dip sharply once they reach higher frequencies and the hearing loss for both ears in that range is severe. The surprise to everyone was how my right ear starts at a point that is barely in the range considered normal hearing, and is, across the board, much worse off than my left ear. I was told by both the audiologist and the ENT that hearing loss associated with chemotherapy is generally equal in both ears.

The ENT recommended that I have an MRI in order to rule out the possibility that (“considering your history”) there is a benign growth that has caused the more profound hearing loss in my right ear. I tried to stay calm when she started explaining that if something were to be found I would need to consult a neurologist. I said, “could it be malignant?” And she said, “I have never seen a malignancy in this area causing hearing loss.”

I had the MRI on Monday, and was not worried. I know that my hearing has been uneven for years, and that there are many, many reasons (most of them impossible to determine) for the discrepancy between my right and left ears. On Thursday the ENT left a message on my phone letting me know that the MRI came back all clear. Good news.

In other news, the audiologist said to me, “I think hearing aids would help you, but I don’t want you to use them for at least another six months.” Why? Because — and oh how I wish someone, somewhere had told me this six months ago — in the case of hearing loss like mine (from toxicity), the potential for further damage to the ear is greatest in the first year after initial damage. This means that I need to keep my ears very protected from any potential harm, especially overly loud noise for extended periods. Oops. The hearing aids, of course, are simply amplifiers in my ears, and could potentially further damage my ears. So, in the beginning of 2010 I will revisit the audiologist and determine if I do, in fact, want hearing aids.

Part II: Kokopelli is the Man (apparently)

Infertile. So what, you think, right?

I had no idea how upset I would be about the prospect of becoming infertile, let alone being informed that I am indeed so. It’s an odd, frustrating, often angering predicament. So much so that I am a bit speechless about it at present.

I can say this: I did bank sperm, as many of you may recall from my posts about the so-called Collection Room, and we’ve been paying rent on the stuff (about $50 a month) for nearly two years — insurance does not cover this. We have only just begun to take the steps necessary to even really learn about the process involved in putting my frozen boys to use. It looks to be an interesting, emotional, potentially tiring and aggravating journey. We are frightened of it, but joyous at its existence, for its potential. We recognize that not everyone feels as we do, but we have strong desires to be parents…so, we’ll see.

On Scars, Langer’s lines, and Deafness

Posted in cancer, Cancer Life, testicular cancer with tags , , , , , on April 15, 2009 by lawler

I learned some new things today about the body, about my body. I visited a woman with a very cool name (Morel Stackhouse) who practices something called Ortho-Bionomy and spent an hour or so having my RPLND scar worked on to promote healing and reintegration of the scar tissue — or perhaps just integration.

When I stepped inside her home, just a few blocks from ours, she said “Blah blah leave blah blah blah here.” At least, that’s what I heard, my hearing still quite impaired. Nowadays, I’ve become half-way decent at deciphering what a person has said by hearing some of their words and applying context. I knew she had asked me to leave something by the door, and because my cell phone was in my hand I deduced that she had said “You can leave your cell phone here.” I took my bulky keys and my cell phone and set them on the counter and looked back to her silently.

“Your shoes,” she said, “I don’t care where you leave your phone and your keys,” and smiled.

As I kicked off my sneakers, I said, “I’m sorry, I don’t hear very well.”

“Too much loud music?”

“No,” I said, “too much chemotherapy.”

Dawn still marvels that I cannot hear the tea kettle whistling in the next room. It is too close in pitch, it seems, to the constant ringing in my ears, known as tinnitus. I’m still counting on recovering my hearing, and Dawn reminds me that it has not been that long. But not being able to hear people speaking to me — especially those who don’t already know about my condition — has grown tiresome.

On a brighter, more interesting note I also learned from Morel one of the reasons my first surgery was so simple and easy to recover from (in contrast with my RPLND) — and why the scar is so different, both in the way it looks, and in the way it feels. The reason is what are known as Langer’s lines and that surgeons take advantage of them. The lines represent the natural tension of skin, or how skin is held together on the human body.

My first surgery, an orchiectomy, was a small incision that followed the contour of the Langer’s line in that part of the body. My RPLND, on the other hand (as with most abdominal surgeries) slices right across several of the lines, as you can see in this diagram:

langers-lines

When I run my fingers down my scar, I can actually feel where these lines are because they have formed slight bumps in the scar tissue. I was quite happy to hear Morel say repeatedly, “Your surgeon was very, very good,” as she worked on the scar. At one point she said that one way to know this was by judging how well the Langer’s lines had been realigned when I was put back together. She said that sometimes they are not aligned properly and you end up with a scar that pulls against itself, causing even more discomfort and difficultly in healing.

She also got me thinking again about something that occurred to me a few weeks ago about my tattoos. In thinking about them in the context of this massive scar, I realized how forced they were — and how their meaning has diminished in my mind over the years, and especially now that I have been given (yes, it was a gift of sorts) this strange scar. Tattoos are artificial — albeit often beautiful — scars. Their meaning is frequently superficial, and is always imprinted with the owner’s subjective and sometimes misguided intent. They are, I must admit, affectations. They simply do not rise to the level of importance (or meaningfulness) of a scar of the sort that now runs down the middle of my gut. They were not really earned, and are merely art objects forever affixed to my skin. I never really understood that until now. The story that my surgical scars have to tell are so much more rich and inspiring than the tattoos on my body.

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Before I forget…Dawn and I took the plunge this week. It’s one little step toward starting a family: a new, safer, more fuel efficient, environmentally friendly vehicle (isn’t it cute?):

The newest member of the Wisconsin branch of the Lawler family - a 2009 Toyota Yaris.

The newest member of the Wisconsin branch of the Lawler family - a 2009 Toyota Yaris

Looking for Easter

Posted in cancer, Cancer Life, testicular cancer with tags , , , on April 12, 2009 by lawler

Today was Easter. Dawn played a church gig in the morning and then we headed out to Bear Valley to spend the day with Dawn’s parents, her brother (up from Chicago) Andrew, and the Walton’s. As usual, Georgia made a wonderful meal, and then we all traipsed around the family acreage looking for twelve well-hidden Easter baskets that my father-in-law Hartmut placed carefully earlier in the day. All conversations about the Easter hunt that took place prior to the actual event were full of adolescent-like disdain. The fact is, it was fun. I trotted around documenting the event, but feeling as though I should try to find a basket too (it is a competition, right?). With some help from Hartmut (“You’re getting warmer…Andrew is very cold…Dawn is hot,” et cetera) I found one of the tiny baskets!

So, here is the most recent picture I have of myself (as promised yesterday)…still skinny, but not looking like a naked mole rat (aka cancer patient) anymore. That’s my Easter basket atop my head, by the way…

Proud of my easter basket. Easter, 2009.
Proud of my easter basket. Easter, 2009.

a finished product

Posted in cancer, Cancer Life, testicular cancer with tags , , , on April 10, 2009 by lawler

My brother Greg called me last week. He said, “I check your blog everyday, and you haven’t posted in a while, so I thought I’d call…” Yesterday Dawn said, “Mike, you really need to post on your blog because people are starting to email me with questions.”

I know, I’ve been bad about writing here — life has gotten busy again, since I started back full time with CTM at the beginning of March. It’s a struggle to not simply relax back into the comfort of the day to day life I used to lead. I don’t want to do that. I want to find new ways of living that support what I’ve learned through all of this cancer shit. I’m trying.

As part of my trying I have been meeting with a woman that initially got to know through my work on the Cancer Stories Project. She has helped me determine some of the positive actions I can take to help my body (and mind) heal from what it has been through over the last several months. One of the first steps is something called Ortho-Bionomy. It is a form of massage that can be applied to major scars to help them heal better. I had no idea what an incision like mine would feel like once it had “healed” into a massive scar. Having a scar like mine is like having some kind of knotted rope fused into your body — you know it shouldn’t be there, and so does your body. I will be having my first session of “scar work” next week, and am curious to see how it helps.

I’m also planning on taking up Yoga in a structured environment soon — although at the moment I don’t think my body is really ready for it. I’m wary of pushing myself too much. I’ve also been (for now) talked into trying acupuncture. Oy vey. Really? Yes. I’ll keep you posted on that as well.

In the meantime, here’s the latest: I will not be taking the oral VP-16. My white blood count tested low for three weeks in a row, and while my local oncologist was encouraging me to continue to have it tested, Dr. Einhorn advised that I not continue and that I not take the oral chemo. I was already leaning in this direction — and so was Dawn. We felt that my body was simply not prepared to endure more toxic chemicals, and that it was time to stop. Considering how the two rounds of high dose chemotherapy and the RPLND have changed me, affected me, it was a bit scary to think of taking yet more chemo anyway. I’m relieved.

In a recent email from Dr. Einhorn’s nurse, Jackie, she said, “Congratulations! You’re a finished product!” I said to Dawn, “that’s a strange way to say it, don’t you think?” Dawn said, “Not really, considering that’s how they think about people in the medical world.” It was telling, even though I know that is not how Jackie meant it — she is a very caring and competent nurse. It’s also a strangely ambiguous phrase: you’re finished. It has two opposing meanings, and they are purely contextual; that is, I could say to you with identical tone and inflection, “you’re finished,” and without knowing what was inside my head (let’s pretend I’m a doctor), you could either think I was saying, “you’re a dead man,” or, “you never have to come back to my office again.”

So, I’m finished. Like a fully restored piece of antique furniture — not quite the same, but in pretty good shape. I’m still having some residual trouble in my abdomen, mostly in the form of pain that sometime radiates into my back, and a still occasional uncomfortable emptying of the bladder. Considering that (from at least one account I’ve read) an RPLND involves the lifting and setting aside of one’s intestines, I guess that goes with the post-RPLND territory. Recently, I asked Dr. [name withheld] via email about these continuing side effects, and he replied simply: “Both of these issues will resolve over time.” Isn’t that reassuring?

Greg also asked that I post a picture, because he didn’t realize that I was looking back to normal with hair. Here is one that was taken shortly after my surgery. I’ll post a more recent one soon.

Self-portrait, February 2009

Self-portrait, February 2009

All things considered

Posted in cancer, Cancer Life, testicular cancer with tags , , , on March 12, 2009 by lawler

When I saw Dr. [name withheld] last week, he said to me, “considering what you’ve been through, you’re doing really well.” I took it in a glass-half-full way to mean, “you’re recovering well after harsh treatments and surgery, and better than most people in your place.” But it could also be taken in this way: “you are recovering, there seem to be no setbacks, but you have been through a lot of things that are not good for the human body and though you are doing well, you have a ways to go.”

It’s this second interpretation that seems most honest at this point.

Today, I went to see my Madison oncologist, my trusted doc, and to get my white blood count checked again to determine if I can begin the oral chemo. My WBC came in at 3.0, or 3000. Higher than last week’s 2.5, but not as high as they’d like it to be — 3.5 or higher.

The thing is, even if my WBC is up to 3.5 next week, the likelihood that such a low number will endure much of the VP-16 is slim. In other words, if my WBC is still trying to recover from all of that nasty high dose chemotherapy then it’s probably going to take a hit when (and if) I start the VP-16. A week, a day, a pill…and they’ll have to stop the drug.

So, what’s the point? That’s what I’d like to know.

This week has been sort of a rough one. I’ve been intermittently physically ill and in pain since Sunday night, and yet everyone still thinks I’m doing well. My oncologist said, in essence, that none of this stuff surprises him: not the low WBC, the low platelets, the illness, the pain. “Considering what you’ve been through…”

It’s funny. Everyone I encounter lately, from friends, to co-workers, neighbors, even doctors and nurses say to me basically the same thing: “You look great, Mike!” I take that to mean, “Wow, what a difference a little hair makes to one’s appearance!” It’s difficult to counter such a reception with something honest, like, “Yeah, I do look better, but man, I still feel like shit a lot of the time. How’ve you been?”

And so, I asked Dr. Arbaje today: “Doc, I have to live in this body for the next fifty years — is it wise to pursue more chemotherapy, and take the VP-16? Considering what I’ve been through, that my body is still trying to recover, that I am clearly not back to full health, and that some of the effects of all this treatment will be with me for a long time, perhaps even my entire life — I mean, how much more can my body take?”

“I don’t think we should make any decisions at this point,” he said, ever the even-keeled scientist.

And so there we are. My doctors telling me to follow the “maintenance treatment” route. My body telling me to cut it out.

Two weeks ago, I had prepared myself mentally (if not physically) to begin the three months of oral chemo. But then they gave me a way to squirrel out from under the plan — and now I’m not sure what to do.

For now, I will go and get the tests done, see what they tell us, and listen carefully to the opinions of my doctors. Either a continued low WBC will make the decision, or I will.