Archive for chemotherapy

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?

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.

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.

What’s the opposite of certainty?

Posted in cancer, Cancer Life, testicular cancer with tags , , , , , , , on January 3, 2009 by lawler

I mean, besides uncertainty. Doubt, incertitude, doubtfulness, dubiousness — or, my personal favorite, dubiety.

This morning, before seeing our friends from Seattle Aurelia and Tim off to the airport after an extended holiday visit, we sat in the coffee shop (by now, you should know which coffee shop) with the four of us and Aurelia’s brother Léo. As Dawn and Aurelia played their favorite card game (Spite & Malice), Léo read a book called Neural Prosthesis: Replacing motor function after disease or disability, and Tim and I waded through the NY Times I noticed an article in the Business section with this headline: Coping Skills and Horrible Imaginings. Naturally it caught my eye.

In the piece, Alina Tugend writes —

Nov. 17 is officially “Coping With Uncertainty Day.” …I really think we need more than a day. In fact, 2008 could be the “Coping With Uncertainty Year.”

And I thought, you got that straight. Or, more to my taste, “Coping With Dubiety Year.”

But then, that’s not quite right either — especially because the dubiety continues, uninterested in the arbitrary numbers we assign our tomorrows. At the moment, the most uncertainty seems to be regarding my continuing treatment. At last word, the surgeon in Indiana who is to remove the remainder of my tumor is very busy and may not be able to operate on me until mid-February. As a result, we have lots of unanswered questions for my doctor down there, Dr. Einhorn:

Is it okay to wait that long to remove the tumor?

Would the resulting delay in my oral chemo regimen affect its efficacy?

And then there are a few questions that Dawn and I have to ask ourselves (mostly centering on this thought):

Should I plan on going back to work before the surgery — it seemed so perfect a plan to have the surgery this month, recover, and then go back to work while on the oral chemo.

When we have answers, I will be sure to let you know. It will be a relief to release some of the incertitude, doubtfulness, and dubiousness from life.

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

There is a first time for everything, and yesterday it was for Mike ice skating. I figure, if I’m going to live in a part of the world that freezes over for months at a time, I might as well take advantage of it and do things we just don’t do where I grew up. Dawn and I are planning on buying some ice skates of our own now, so that I can get better (much better, I hope) at it. Here are some photos from yesterday’s adventure…

100_8500

100_8507

A String of Sundays; or, Who Needs Eyelashes Anyway?

Posted in cancer, Cancer Life, testicular cancer with tags , , , , , , , , , on December 28, 2008 by lawler

I’ve been home in Madison now since December 20 — about a week. Since then, I’ve visited with friends, shoveled a lot of snow, picked up some friends at the airport, dropped another friend off at the airport, shoveled more snow, spent lots of time with neighbor John’s cat while he’s gone for the holidays, done several “around-the-house” projects (mostly replacing electrical outlets in the kitchen, which seems to take me forever), raked the snow off the roof with my homemade roof rake, and shoveled yet more snow. But mostly, I’ve been lounging around the house reading a lot. If I’m not reading online (NY Times, Slate, posted items on Facebook, etc.), then I’m reading magazines (The New Yorker, This Old House), local rags (The Isthmus, 77 Square), or books (McCarthy’s The Road, a memoir of life with Charles Mingus by his widow called Tonight At Noon, The God Delusion, by Richard Dawkins).

It’s like Sunday everyday.

Sometimes I feel lazy. But mostly, especially after doing something that takes some physical effort — shoveling snow, let’s say — I recognize how physically weak I still am after undergoing high dose chemo, and being confined to a hospital room for nearly six weeks in total. It doesn’t take much for me to get winded and get my heart rate up. Even working on the electrical receptacles makes me tired.

It was beautiful here in Madison on this true Sunday, with a light overnight snowfall cleaning up the streets and the sun shining brightly. After concentrating on house projects all day, we managed to go out for a walk before the sun went completely down (it’s generally dark here by 4:30 this time of year). Then we went to the Washington Hotel Coffee Room, my favorite coffee shop on the planet that happens to be around the corner from our house. It’s the first time I’ve been there in months, and it was nice to be back. On the way home Dawn said, “It’s nice to be out doing something as a couple again.” Amen.

————————————————————————————————————————————————————

How Cancer Alters One’s Self-Image Part 352: Eyelashes grow back, don’t they?

Unlike last year’s chemotherapy, the high dose stuff seems to have really taken all of the hair from my head. Last year I even remember writing a post about how it would’ve been nice if chemo disposed of my ear hair for a while. Well, this time it did. Add to that my eyebrows and eyelashes, and what you’ve got is one bald brother.

Dawn took this photo of my eye  this evening -- if you look closely you can also note the lack of eyebrow and ear hair.

Dawn took this photo of my eye this evening -- if you look closely you can also note the lack of eyebrow and ear hair.

On Christmas Eve, I got into a discussion about hair with my mother-in-law Georgia when she noticed the still relatively thick hair on my arms. “Yeah, it’s weird,” I said. There is a patch on my left arm where my PICC-line was that is bald because they shaved it and it has not grown back, and the hair usually on the back of my hands is gone, but for the most part my arm hair is as always. Last year, I shaved my arms to avoid slowly pulling it out everytime a piece of tape was removed after being poked with a needle for lab work or a chemo IV. It never grew back, just like the PICC-line patch this year. I postulated that the reason my arm (and for the most part leg) hair remained was due to the type of growth pattern normally associated with it. “It seems like the hair that grows continuously is the hair that falls out,” I said to Georgia. But she made a fine point: “Eyelashes don’t grow continously do they?” And so my theory was shot through. So far, I’ve been unable to find any useful information about how eyelashes grow (frankly, I quickly tired of wading through the cosmetic information surrounding eyelash growth on Google — including this hot news story).

The legend of Graytooth (or Yellowtooth…or Browntooth)

Posted in cancer, Cancer Life, testicular cancer with tags , , , , , , , , on December 22, 2008 by lawler

I’m not one to shy away from honesty. I try, strange as it is sometimes when I meet readers of my blog that I don’t really know well (or at all), to be forthright and simply relate this surreal cancer journey. (When I wrote a few days ago about teratoma tumors and the often grotesque stuff held within them, Todd said, “I’m not sure everyone wants to read about that.”)

Honest as I try to be, one thing that is hard to own up to is the idea of my self-image as a cancer patient. It isn’t vanity, it’s just a lack of recognition. Who is that gaunt, hairless, rotten-toothed patient in the mirror?

That’s right, my teeth are a horrible swirl of yellow, brown, and gray these days. They look rotten.

This picture doesn't quite capture the rotten look of my teeth. Just ask Dawn.

This picture doesn't quite capture the rotten look of my teeth. Just ask Dawn.

The staining is the result of how I must care for my teeth during treatment: Peridex. I brush with a toothbrush soaked in it, and rinse with it three times a day. I’m sure my dentist will be appalled at my stained nashers when I am able to go in for a cleaning.

My self-image is directly tied to my discomfort with the notion of being a patient. I never envisioned myself playing this role — and certainly not at such a young age. My self-image is also inextricably linked with the image of my dying father. I see glimpses of him in the mirror sometimes, and feel that the physical traits I share with him have become pronounced in my illness. My father was a patient for many years before he died in 2006, and his experience is the model with which I am most familiar. As I lie in bed I frequently gently clasp my hands together and rest them just above my stomach. This is something that my dad did too, and because he spent all of his time in bed during the last weeks of his life, I saw this gesture of comfort and habit all the time. When I do it now (especially when I was in the hospital), my mind immediately flits to my dad.*

I don’t know what this means, or why I’m writing about it. I just know this: the psychological hardships are almost always harder to bear than the physical discomfort. It’s difficult to not wish away times like these, and live in the moment — the moment being so frequently uncomfortable, or unpleasant in some way. How do we truly take it one day at a time, and do the best to enjoy the next few months, months that will likely include more hospital time, surgery, continued blood draws (back to needles now that I have no catheter or PICC line!), and three more months of oral chemo? The easiest thing to do is say things like, “I can’t wait until the Spring! No more constant cancer care, living like a patient (read sick person) and the cold weather will be gone too!” But then you’re committing the sin of missing out on life for months at a time, aren’t you? That’s the trick. Being ill, looking ill, feeling ill and still living your life in the most fulfilling, meaningful way possible.

Maybe I should read The Last Lecture.

*Note: I’m going to find a good picture of my dad to post soon.

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

For those of you not in the Midwest (yes, even you Northwesterners alarmed with the snow you’ve received recently), here is a glimpse of the winter we’re having:

Winter Wonderland in Madison

Winter Wonderland in Madison

Note the height of the snow piles on our lawn and on the lawn of our neighbor, Adeline. Also note my truck, which has not yet been completely dug out. You should see the backyard!

The best part about having good neighbors in weather like this? Three doors down lives Larry the Snowblower Man. He has this huge snowblower, and blows most of the sidewalk on both sides of our entire dead end street. The other day, he was even snowblowing the street before the plow came!

Yesterday, Dawn and I went to pick out our first Xmas tree. We’ve never had our own, and we were both excited to have one in our new house. The plan was to buy a living a tree and plant it later on our property in the country. So, we trudged out in the -10° (that’s right: TEN BELOW ZERO) weather to find our tree. Unfortunately, the living trees that were still available were, well, puny, and buried in snow too. So, we opted for the next best thing: a tree farm cut tree that was selling for 55% off. On our way home we stopped off at the hardware store to get a tree stand and some new LED lights. This is where the day sort of went awry. I locked the keys in the car. I was not happy, but fortunately Todd was able to come out and help us by bringing our spare key. We ended up all eating Chinese food for lunch at a place next to the hardware store. The best part? We have an Xmas tree in our living room:

This tree smells great too!

This tree smells great too!