And so, here we are, one thousand three hundred and five days from the day my doctor told me I had cancer — many of them the most difficult of my life — and cancer has, in a way, given me another gift.

His name is Jack — Jack Abebe Lawler to be exact. We began the adoption process about a year and a half ago after deciding to not use the sperm I had banked just days before my first chemotherapy treatments in the Fall of 2007 (we’re still paying for its storage though, which reminds me…). In November 2010, just a week after adopting a pit bull from the Dane County Humane Society (see below), we got a call, the call, known as a referral. Moments later we were staring at a picture of Jack on my computer. We were in shock. The call had come about three months before we had been told to expect it, and here was this four month old little boy staring back at us from half way around the world in Ethiopia. Were we ready? Could we really do this? Yes.

After four months of waiting and traveling — two trips to Ethiopia in the span of two months, in fact — he is now home with us in Madison. He has brought such joy to Dawn and I that, cliche or no, it is beyond words. He is a happy, healthy, fascinating little guy. And, as I said, in some ways we have cancer to thank for bringing him into our lives.

Jack Abebe Lawler, January 2011

We are adopting Jack from Ethiopia, and had the wonderful experience of meeting him a few weeks ago.We were in Ethiopia for about six days, and it was an experience of a lifetime. Much of the time I was looking around in disbelief thinking, “I’m in Africa, I’m in Africa, I’m in AFRICA.” It seemed so unreal, and while the persistent thought was of how to take advantage of the fact that I was in Africa, the overriding feeling was that it didn’t matter where I was, as long as I was able to meet my son — soon.

And we did meet him. We were able to spend quite a bit of time with him on two separate days while there. He is a beautiful, happy, healthy (if a little small) seven month old boy. And now we wait.

…and wait.

For those of you asking, “what in hell does this have to do with Mike’s cancer?!?” I’ll tell you: Mike’s cancer led to Mike’s chemotherapy, and lots of it. One round of the standard for testicular cancer, what’s known as the BEP regimen, and then, about a year later, a little process called High Dose Chemotherapy with Autologous Stem Cell Rescue (this link is to a paper written by the doctors that treated me in Indianapolis). All these drugs killed my boys pretty much dead. And while I banked sperm — viable sperm — before undergoing one drop of chemo, we decided that what we really wanted to do to have a family was adopt a child that needed one. If you’d like to hear a little story about this, you can listen to the podcast I recorded for Wisconsin Story Project by clicking here.

We began the process of adoption in the fall of 2009, and it has been a sometimes arduous process. But nothing could have prepared us for this part. The other night I ran into an old family friend of the Weithe’s (Dawn’s family) and he said to me, “it’s like the gestation.” And it is, I suppose (though I have no frame of reference here). Except that it’s not. As you can see from the photo above and those below, Jack is a very real baby boy whom we’ve had the pleasure and privilege of holding in our arms, rocking to sleep, playing with, kissing, and laughing with. He is not an ultrasound image on our refrigerator. What he is is a very real child living in an orphanage half a world away from us. Perhaps it’s impossible for people who haven’t gone through (or are currently going through) this, but I assure you it is rough. Concentration? Forget it. Peace of mind? Not really.

As we rush to finish the basement room that will expand our little house to make more room for our growing family, baby clothes, toys, cribs and changing tables have started filling every available corner and open bit of floor space in anticipation of his arrival. “When is the baby coming home?” is the question we are asked at least once a day by well-meaning people in our lives. “We don’t know yet,” is all we can tell them. I usually add, “in a month or so, we hope.” When we received the referral phone call in November (we were, I should note, completely taken aback by this as we weren’t expecting it for a few more months at least), he was four months old. He is now seven months old, and might be eight or nine months old by the time he comes home. I know it sounds like no time at all (a friend, also an adoptive father of a son from Ethiopia said to me recently, “Eff you, my son was eighteen months old when he came home” as a semi-serious joke about our impatience and the time we were missing with him).

Mike & Jack in Ethiopia

Dawn & Jack in Ethiopia

We are planning to name him Jack Abebe Lawler. His first name is from my father — whose given name was John, but was known almost universally as Jack. His second name was his given Ethiopian name, and we wanted to be sure that he would carry that with him throughout his life. In my own way, I can connect deeply with the idea of living with a significant shift in life at a very early age, and I am grateful for the tidbits of information and lore that I have to remind myself of my own early life with my mother. We are working very hard to ensure that little Jack has more than tidbits from his first year of life. And his name is a part of that.

Okay, so it’s time to stop writing this post. I’ll write more when I can about WHY we are waiting, but for now I’ve said something, gotten it off my chest — and now I’ll go back to waiting.

At one point in the interview (which you will be able to hear on the Wisconsin Storycast next month — stay tuned) she began to talk about how she meditates on some of the things that scare her most, namely the death of her children and her own death. She spoke about how important it was for her to come to a resolution on those frightening events so that she can face them – or, at least, the idea of them.

So, what does this have to do with me or this blog, with cancer, with asbestos? Good question. Here’s how it fits together: a day after interviewing Gaines and — as happens with many of the cancer related interviews I’ve conducted for WSP — being faced with new ideas to think about on cancer, life, death, and everything between, Dawn and I walked down to our basement to begin the demolition of a decades old (and quite humorous in decor) room so that we could refinish it to better suit the expansion of our home and the child we hope to adopt. We were both very excited and began tearing walls out and then found ourselves looking at the ceiling. It was covered in this goofy thatch stuff, remiscent of the set from my high school production of South Pacific. We tore it down, and beneath it was a fiber board in sheets nailed to the floor joists. We began tearing that down, and it was old and crumbly. The basement started to look dusty. I told Dawn that we should stop and get dust masks and goggles. So, we did. Then we went at it with abandon and tore the stuff down.

Later that night, I went for a walk around the bay and started to realize that the stuff we had just torn down from the ceiling of the basement could have contained asbestos! We had worn nothing but basic dust masks and eye protection. Judging from the two Playboy issues we found in the ceiling and one wall, it appeared the room had been built sometime during or after 1976, right around the time asbestos was being seriously phased out of construction material like floor and ceiling tiles. There had been composite floor tile in the basement room too, but we had it professionally removed. It had contained asbestos. What, I thought on my walk, had I done? Had my absent-mindedness led me to allow Dawn and I to be exposed to airborne asbestos dust without proper protection? Shit.

On the walk, as I panicked over this realization, I remembered what Meg had said. I have faced cancer, faced my own mortality, my lack of invincibility — but still I remain terribly afraid. I tried to use this asbestos incident to face up to it all, to think about my death. How might it happen? What would happen to the people I love when I was gone? Could I face death in peace — with dignity? (here a classic George Costanza line springs to mind, of course: “I’ve lived my whole life in shame — why should I die with dignity!?!”)

When I came home from my walk, I didn’t know how to tell Dawn of my asbestos fear. I waited until the morning to do so. Then I went and bought a proper asbestos rated respirator, gloves, and a disposable coverall. I went back into the basement and cleaned most of the mess up. Then, I decided that I would hire professionals to evaluate the basement, test the ceiling material, and, if needed, finish the clean up.

I’m still worried, of course. If the stuff turns out to have contained asbestos, we were exposed beyond the level that I think is healthy; however, I also know that asbestos related cancers are very rare — they seem to be found mostly in folks with long term, high level exposure. And then I think, “Well, hell, 85% of lung cancers are thought to be caused by smoking, and look at all those fools that not only take in a known carginogen, but do it with pleasure, without the benefit of respirators!”

As many of you know — especially if you read this blog — I was profoundly unhappy with my Madison oncologist, Dr. Arbaje recently because of some things he said and the letter he wrote for our adoption dossier. I took the opportunity yesterday while meeting with him to confront him on both issues, telling him frankly what I thought about his choice of words in our last appointment and my disappointment with his letter compared to the one provided by my Indianapolis oncologist, Dr. Einhorn (I brought copies of both letters for him to keep).

After explaining to him that Dawn and Iwere offended by his “single parent” remarks, he admitted that he regretted how he answered our question and sincerely apologized. We had a very good conversation about the whole situation. He shared with me his affinity for Dawn and I and how he wished “he could take it back.” The conversation, and his willingness to engage in it reminded me of why I like and respect him so much — as well as why his actions bothered Dawn and I in the first place. It was unexpectedly harsh and insensitive behavior from someone we knew to be exceedingly kind and sensitive. He even called Dawn personally later in the day to apologize to her.

As I left the appointment, he thanked me for talking to him about the issue. “It would have been very easy for you to simply select a new doctor and not deal with this, and I appreciate that you brought it up with me and that we talked about it,” he said.

It was a difficult day to face, but one that was both a relief and a reminder of the good things that misfortune and misunderstanding can actually bring into our lives.

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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:

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:

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!

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.

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.

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:

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

]]> http://theceeword.wordpress.com/2009/04/15/on-scars-langers-lines-and-deafness/feed/ 2 mike langers-lines misc-personal-005 http://theceeword.wordpress.com/2009/04/12/618/ http://theceeword.wordpress.com/2009/04/12/618/#comments Mon, 13 Apr 2009 04:00:29 +0000 lawler http://theceeword.wordpress.com/?p=618 ]]> 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.