Archive for December, 2008

resolute

Posted in cancer, Cancer Life, testicular cancer with tags , , , on December 31, 2008 by lawler

1. Live purposefully.
2. Get healthy.
3. Launch Wisconsin Story Project successfully.

That is my list of resolutions for 2009. I’m not one who usually thinks of such things — new years resolutions, that is — but, as my cancer enters a third calendar year, I recognize that jotting down such reminders might just be a good idea. Sharing them with you will only help reinforce them because I know many of you won’t let me forget what they are.

And a toast: may we all live 2009 to the fullest — be happy, healthy, and good to one another.

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.

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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).

Some things that happened

Posted in cancer, Cancer Life, testicular cancer with tags , on December 23, 2008 by lawler

Here are some photos of things that happened while I was in Indianapolis from December 4 through December 20 — they are things I intended to write about but never found the energy or time, or things that I did write about but failed to post the related photos. Enjoy.

my first day back in Indy they drew a lot of blood. This photo is of the tray that nurse Beth created inthe process.

Blood & Plastic: my first day back in Indy they drew a lot of blood. This photo is of the tray that nurse Beth created in the process.

The hospital was full the day I was supposed to be admitted, so I spent that first night alone in a nearby hotel. I took this photo of myself in my hotel room the morning I was admitted.

Ghost Mike: The hospital was full the day I was supposed to be admitted, so I spent that first night alone in a nearby hotel. I took this photo of myself in my hotel room the morning I was admitted.

My room in the IU Simon Cancer Center

My room in the IU Simon Cancer Center

this is the view when strangers come into your room and transplant your stem cells.

Stem Cell Rescue: this is the view when strangers come into your room and transplant your stem cells.

probably the most beautiful view I have ever had from a hospital room. It didn't last long, but it was nice while it did.

Dusk: probably the most beautiful view I have ever had from a hospital room. It didn't last long, but it was nice while it did.

playing rummy with my love.

Dawn: playing rummy with my love.

Some excitement in the Cancer Center -- a car fire breaks out in the parking garage across the street. Fortunately, Todd's rental car was not damaged.

Fire!: Some excitement in the Cancer Center -- a car fire breaks out in the parking garage across the street. Fortunately, Todd's rental car was not damaged.

Todd and I spent much of our time playing Battleship. Our obsession with patterns, however, gets the best of us and we end up more concerned with how our pegs look than whether or not they are striking their targets. At one point, Todd actually calls a stop to a game so that his pattern will not be disrupted.

You Sunk My Battleship: Todd and I spent much of our time playing Battleship. Our obsession with patterns, however, gets the best of us and we end up more concerned with how our pegs look than whether or not they are striking their targets. At one point, Todd actually calls a stop to a game so that his pattern will not be disrupted. This photo is of my most successful game: an excellent pattern and a win.

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.

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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!

home (aka snowland)

Posted in cancer, Cancer Life on December 20, 2008 by lawler

I just wanted to post a quick note to let everyone know that I made it home to snowy Wisconsin this afternoon and am just plain relieved to be out of the hospital and in the same room with Dawn. It’s sort of unbelievable how much snow is on the ground here, especially considering that it’s still coming down (I’ll post some pics tomorrow for those of you in warmer climes).

Special thanks to Todd the drummer for the ride home.

Friday

Posted in cancer, Cancer Life, testicular cancer with tags , , , , , , , , on December 19, 2008 by lawler

The word has come down: with my white blood cells clocking in at 3.9, I will be discharged tomorrow (Saturday) morning. 

Today they will give me platelets, since they are low, and will then remove my apheresis catheter — something I’m a bit anxious about because having it placed was a bit traumatic. I’ve been told that the removal of the catheter is much easier than the placement, so I’m hoping for the best there.

The results of yesterday’s CT scan were straightforward enough: Dr. Einhorn informed me that there is a lymph node in my abdomen that has a distinct teratoma growth, and will need to be removed through surgery in January.

If you’ve ever seen the film My Big Fat Greek Wedding, you may recall how the character Aunt Voula explains her own teratoma: 

[to Ian’s parents] Now, you are family. Okay. All my life, I had a lump at the back of my neck, right here. Always, a lump. Then I started menopause and the lump got bigger from the “hormonees.” It started to grow. So I go to the doctor, and he did the bio… the b… the… the bios… the… b… the “bobopsy.” Inside the lump he found teeth and a spinal cord. Yes. Inside the lump was my twin.

Yeah, that’s teratoma. It’s like a bunch of confused embryonic cells, and they sometimes just start making stuff — like teeth, hair, bits of spinal cord. Who knows what they’ll find!

In weather related news, the drive home may be an adventure for Todd and I. Once again, Todd is staying on in Indianapolis a day longer than he planned. The issue this time is as much the severe weather we’re having in the Midwest as it is my impending discharge. Today is a bad day to travel the roadways, and we’re counting on tomorrow being just enough better to get us home to Madison without much fuss (or sliding into snow banks).

The finish line

Posted in cancer, Cancer Life, testicular cancer with tags , , , , , , , , on December 18, 2008 by lawler

There is a dry-erase calendar on my bathroom door, where my treatment is tracked meticulously in numbers. It looks like a strange, evolving mathmatical equation. But every square represents a day, and each day contains very specific information. The key information is represented by the letters W, H, and P — White Blood Cells, Hemoglobin, and Platelets. The H and the P are important, and the numbers aside them dictate whether or not I am in need of a transfusion of some sort. But the W is king. It is the number to watch.

This morning, I was awoken by the scuffling feet of my day nurse, just starting her twelve-hour shift. When I opened my eyes, she was standing in front of the dry-erase calendar, erasing and writing, making that squeaky noise that dry-erase pens are famous for. But her head was in the way. I couldn’t discern what numbers were being written after the W, the H, or the P. I moved  my head around, trying to get a  look. Nothing doing.

When she stepped away from the board, I was relieved. The box for today, December 18, read:

The important number here is the 1.6 next to the W

The important number here is the 1.6 next to the W

My white blood cells have “grafted.” My Absolute Neutrophil Count (ANC) is up at 600. Tomorrow they should spike even higher. The finish line is in sight.

Later today, I will have a CT scan to assess the effects of the last several weeks of treatment. I have no doubt it has done the trick. The question that remains is whether or not Dr. Einhorn will recommend the RPLND or not. That is the big question for me.

So, when I have the results I will let you know right away. Thank you all again for the love, energy, prayers, cards, packages, support, gifts, vibes, thoughts, and everything else you’ve sent along to both  Dawn and myself.