Good

Posted in art & community, cancer, Cancer Life, testicular cancer with tags , , , , on July 16, 2013 by lawler

In 2008 and 2009 I listened a lot to Wilco‘s 2007 release Sky Blue Sky. The title track has a line that resonated with me in an almost obsessive way at the time: “Oh, if I didn’t die/I should be satisfied/I survived/That’s good enough for now.”

As with any song lyric that sticks with you, it meant something very real to me that likely was hardly connected to whatever Jeff Tweedy meant when he wrote it. What I knew was that I had, in fact, survived–and although that survival meant that certain things would necessarily change, that my outlook and commitments would change (for the better I hoped, I planned), it also meant the hard work of life was ahead of me. And it would be doubly hard because I had a new perspective on what it meant to be alive at all. It meant that dreams would no longer suffice. Taking action, moving forward, listening to myself and making myself heard was what mattered more than ever. But that’s a daunting place to be. So, that lyric from Wilco helped me relax into the moment of simply living, knowing that “for now” being alive was good enough.

Now I am forty. Almost six years have passed since my diagnosis, almost five since my recurrence, and over four since my last bit of treatment (the infamous RPLND). Lately, I’ve been asked about turning forty. The questions (or comments) obviously fall within two camps: those from people not yet forty, and those from folks over forty. The under forty crowd ask things like, “how does it feel?” The over crowd says “trust me, you’re still a kid” or,  “welcome.” A friend recounted her brother-in-law’s thoughts when he turned forty. She said, “for him it was all about options.” I said, “what, like he was running out?” She said, “no, just that he was thinking a lot at the time about what his options were.” I’ve done a lot of that lately as well. I haven’t been rolling my options over and over in my head because I knew I was about to turn forty. It wasn’t a conscious thing. Somehow my gut was just telling me to do it. So I did it to the point of ridiculousness.

But the thing I kept coming back to was whether or not I lived up to the decisions I made about life when I was sick (while a mere 34 & 35 year-old kid). I haven’t combed through this entire blog recently, and I know I wrote about many things while in the throes of treatment and recovery, but my recollection is simple enough on this point: I decided to stop waiting. Stop waiting to write, stop waiting to take risks, stop waiting to tell people you love them, stop waiting to try ice skating or making a friend or moving on. Don’t wait because you’ve been given a second chance. Take it.

And I believe I have. It’s not the stuff of hollywood movies, of course, but I’ve taken risks, I’ve written my ass off (albeit in fits and bursts), I’ve said I love you to people more times than I could possibly count (my son hears it at least ten times a day), and I’ve made friends I might have been too shy to meet before my second chance. The struggle continues to be holding on to the feeling I had when I finally could stand up straight again after the RPLND and go back to work. It was a new era, a new chance–the kind of feeling you get only on rare occasions. It’s a hard thing to keep hold of over the course of years.

Thankfully it’s an effort that has been usurped by something different: being a father. Becoming a parent is by far the most important thing that’s happened since my cancer (in spite of my cancer). The difference between those in my life who are parents and those who are not is far greater than the separation of the under forty and the over forty crowds. Being a parent is profound and life changing in ways that getting older is not (at least so far). While the comparisons to my own father roil in my brain quite persistently now, it has more to do with myself as a parent than myself as a man. My son reminds me every day, by his simple presence, that things are not just good enough any more. They are good. Very good.

Three very important people in my life: my son Jack, my oncologist Dr. Arbaje, and my father-in-law Hartmut.

At my 40th birthday party, three very important people in my life: my son Jack, my oncologist Dr. Arbaje, and my father-in-law Hartmut.

Advertisements

Hear

Posted in Cancer Life with tags , , , , on October 7, 2012 by lawler

It has been just about four years since I checked into the Simon Cancer Center at Indiana University. I still remember sitting in my hotel room the night before checking in to the hospital with my old friend Tara watching the poll returns for the 2008 Presidential election (we didn’t have to stay up late for the results). The day before Dawn and my brother Jeff watched a machine harvest stem after my apheresis catheter was put in place, and then headed north (Jeff to a flight home to L.A. from Chicago, and Dawn home to Madison). Earlier that day I sat in my hotel room alone (probably writing on this blog about something), and looked down to see a giant blood stain on my chest. I tried to stay calm, disappointed that my Obama tshirt was probably forever ruined, but thinking that it was at least a meaningful stain. I called the hospital, and then called Tara (who was in route to Indianapolis from her then home in Cincinnati). Back to the hospital I went, where the nurse said something like, “Gosh, I thought your catheter was fine when you left.”

This is all to say that it’s been a while. And things have changed for the better. Except one: my hearing. The high dose chemotherapy I endured in November and December of 2008 permanently damaged my hearing, and I’ve spent the last four years coping. I guess the thing that has made it the hardest is Jack, the awesome two year old kid Dawn and I are lucky enough to call our son. I mis-hear him all the time, and I don’t want to miss any more of what he has to say. So, tomorrow I get hearing aids. I’m excited. It’s exciting, right?

parenthood

Posted in cancer, Cancer Life with tags , , , , on March 27, 2011 by lawler

Not too long ago I was putting together a work sample for an artist residency I hope to do this summer in order to work on a play I am writing and in the process listened back to some of the podcasts Talish Barrow and I put together for Wisconsin Story Project. One of them contained a long intro by the hapless hosts (Talish and I) and at one point I say, “cancer is like Christmas,” and go into a fairly articulate explanation of that somewhat crass phrase of mine.

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.

Life Goes On

Posted in cancer, Cancer Life, testicular cancer with tags , , , , on February 13, 2011 by lawler

It’s been over a year since I’ve posted on this blog, and I’m not sure that anyone will even see this (although I am baffled by the fact that I apparently still receive an average of 1000 hits on this blog each month) — but it occurred to me recently that Dawn and I are now in the midst of one of the stranger periods of our cancer journey…waiting. We are waiting for what is probably the greatest gift cancer has given us: our little baby boy, Jack Abebe. Here’s a photo of him from last month:

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.

Asbestos Meditation

Posted in cancer, Cancer Life, testicular cancer with tags , , , , , on November 22, 2009 by lawler

On Friday I interviewed Meg Gaines for our third installment of the Wisconsin Storycast — yet another branch of Wisconsin Story Project. Gaines is the Director of the Center for Patient Partnerships here in Madison and a cancer survivor. Her story is amazing, especially considering how it led to her fervent patient advocacy and the founding of the Center.

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!”

No News is (you know) & A Mea Culpa

Posted in cancer, Cancer Life, testicular cancer with tags , , , on September 18, 2009 by lawler

First: the much anticipated September check up came back ALL CLEAR. The CT scan looked good, my tumor markers are holding at the slightly elevated levels they have maintained for months, and my white blood count is still low at 2.8. The key to that statement is that I am STILL CANCER FREE, and as far as I’m concerned, after hitting this milestone, and passing through my first cancer-free September in three years, there’s no looking back now.

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 I were 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.

Never Alone

Posted in Cancer Life on September 1, 2009 by lawler

After yesterday’s post, I found this piece in the NY Times. It is so spot on, and sounds so true and real to me. The “chemo brain” thing is something that I feel I have struggled with too, but it’s impossible to know — how much of that is me looking for an excuse, and how much of it is really the fog from all of the chemo drugs (especially the high dose stuff)?