Archive for the testicular cancer Category

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.

—————————————————————————————————————————————————————————————————————————————–

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

Advertisements

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.

silver nitrate and white blood cells

Posted in cancer, Cancer Life, testicular cancer with tags , , , on March 2, 2009 by lawler

It’s Always Something

I spent much of this afternoon in various rooms of the IU Simon Cancer Center in Indianapolis. I was there to meet with my “Indiana oncologist” Dr. Einhorn, and the surgeon who removed nearly twenty of my abdominal lymph nodes exactly one month ago, known here as Dr. [name withheld]. I arrived early, and stayed much later than expected.

First, it was the oncology clinic to have blood drawn and wait to see Dr. Einhorn. And wait we did (my father-in-law, Hartmut, was there with me). When I finally did see Dr. Einhorn and his nurse Jackie there was (as usual, it seems) one surprise: although my tumor markers were all normal, my white blood count (WBC) was unexpectedly low at 2500 or 2.5. Although a low WBC is not abnormal for someone who has recently undergone high dose chemo, it did seem odd to everyone that my WBC had recovered before my surgery — it was about 7000 then — and now had taken a nosedive.

“It may just be an aberration,” Dr. Einhorn said.

The trouble with this low WBC is this: they will not start me on the oral VP-16 (aka Etoposide) if my WBC remains at this level because, of course, the chemo’s main side effect is a lowering of the WBC. Because the VP-16 is a “maintenance” measure, rather than treating an existing cancer, Dr. Einhorn told me that he would not want to risk the dangers when the benefits are not wholly known and may not be worth it.

So, next week, I will have my WBC checked again. It is entirely possible — and very likely according to Jackie — that my WBC will come back normal at that time. If it does, I will begin the VP-16; if not, we will have another discussion and make a decision about further treatment.

——————————————————————————————————————————————————————————————————————————————-

Proud Flesh

Two weeks ago when my local GP removed fifty-two staples from the incision running down my middle, he placed about eight large Steri-Strips across the wound to hold it all together. Today, Dr. [name withheld] tore off the remaing six (along with much of my hair). There were a couple of spots in the lower third of the wound that didn’t fare too well during the staple removal, and they were dealt with today with something called silver nitrate.

“Ah,” the doctor said after removing the final two Steri-Strips, “I see what we have here.” He stepped over to a cabinet and as he began pulling out little sterile packages said, “it’s called proud flesh.”

“Proud flesh?” I said.

“Yes,” he said, “so what I need to do is cauterize it with silver nitrate.”

Cauterize? Cauterize? I didn’t like the sound of that and winced a little when he said it. When I think of cauterization, I think of burning. And I also think of it as a means of coagulating. But, in this case, it was a means of destroying damaged tissue to let the affected area heal. And so, he pulled out what looked like a very long Q-tip and set about cauterizing an area of my incision that is about an inch and a half long. It stung a bit, but was not overly painful. The area is now sort of grotesque looking, almost completely blackened by the process.

My body looks very strange to me now, a long still healing scar slicing through the center of my body — my belly button misshapen, seemingly forever. It will make it very hard to forget this cancer experience of mine. Maybe that’s a good thing.

Dawn (still)

Posted in cancer, Cancer Life, testicular cancer with tags , , , , on February 25, 2009 by lawler

It seemed like a good time to re-post this entry. The details have changed a bit, but then again, it’s all the same. It’s one of the things that I’m glad to be able to repeat. Despite sounding overly sentimental, Dawn is my best friend and — as many of you have astutely noted — she has gone through all of this cancer shit right alongside me every step of the way. Even when she was hundreds of miles away, she has been with me. And it hasn’t been easy for either of us. So, I just wanted to say thank you to her again. It’s been too long since I’ve done so publicly.

Dawn

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.

EVISCERATED; or, don’t expect to get a good sense of what I’m writing today from this title

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

That’s the word that one of my co-worker’s used yesterday to describe her impression of my surgery. She said something like, “Considering that you were just recently eviscerated, you look good!”

Last night, Dawn said, “you really should put up another post on your blog — everyone thinks you’re not doing well.” I hadn’t meant my last post to sound that way. I realize now that it had an odd, disconnected header that could be interpreted as negative — but that wasn’t my intent. Sometimes the titles for my post are just the fist thing that comes to mind, sort of a free association exercise. I suppose you could read into that.

Anyway, no one is “rolling over” here. Things are progressing, albeit more slowly than I would like, and I’m more and more back into life everyday.

For the medical side of things, I’ve seen my GP three times in the last two weeks — which is a hell of a lot considering the last time I saw him was August 30, 2007 when he told me he thought I had testicular cancer. Since then it’s been a whirlwind of medical appointments, but none of them with him. When I saw him again yesterday, he asked to be kept more in the loop from here on out. It’s a sign to me that he is not only a good doctor that cares about my treatment, but also that he thinks my medical life will be much more mundane in the near future. Sounds good to me. It’s one thing in life I wouldn’t mind being mundane.

The reason he has seen me so frequently lately is a small issue with my incision wound. The area where it swoops around my navel did not like the staple removal, and we’ve been keeping a close eye to make sure it does not become infected. So far, it is sensitive and sometimes uncomfortable (and itchy!), but not infected.

Next week I will be traveling yet again to Indianapolis to see the surgeon and Dr. Einhorn. I had planned on driving myself, but when Dr. Nettum got wind of this plan (via his nurse Christina, who received the information during what we thought was casual conversation), he told us he would prefer if someone escorted me there. Fortunately, Dawn’s dad, Hartmut, will be able to make the trip with me so that Dawn doesn’t have to worry about shuffling her schedule around. It’s especially difficult for her because of her teaching studio, and all of the students clamoring for lessons! Thank you Hartmut!

I will be sure and put a post up next week to let you know how the Indy trip went. Thank you for reading — and thanks to everyone for your concern, your love and support, your prayers, food (we’ll get those containers back to you as soon as we can), your positive energy, and constant showing of hope.