Archive for Indiana University

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?

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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.

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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…

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Goodbye Dawn; or, Dr. Einhorn answers all of your unasked questions

Posted in cancer, Cancer Life, testicular cancer with tags , , , , , , , , , , , , , , , on December 15, 2008 by lawler

So, clinically speaking, here’s the deal:

It’s Monday, my white blood cells are still hovering at 0.5 (if your curious about the number they consider the bottom of the barrel it’s 0.2 or less), my platelets (remember yesterday’s lesson), and hemo are still low, but okay.

My ass still hurts. Riley’s Butt Cream still applied regularly.

Dawn left early this morning, to make the six hour drive back to Madison in the best possible weather conditions — an attempt to avoid Indiana’s rain and sleet.

And Dr. Einhorn made his Monday morning visit. You may recall, Dr. Einhorn is really the reason that I am in Indianapolis. He and his team are the leading experts on testicular cancer and have forged treatments that have made testicular cancer the success story that is in the world of oncology. Oh, and he treated Lance Armstrong too.

This morning, Dr. Einhorn gave us two previously unknown bits of information — slices of possibility for the future to come, really. First, he reminded me that I will have a CT scan scheduled here later this week so that they can determine what effect the HDC/transplant treatment has actually had. Simple questions to be answered mostly: is the tumor gone? is the cancer anywhere else? are my lymph nodes gone? Wait. What was that last one?

When I first came to the IU Simon Cancer Center, Dr. Einhorn’s partner, Dr. Williams told me upon evaluating my case that he recommended I go through HDC/transplant and that in January I would have surgery — 100%, no doubt — a Retroperitoneal Lymph Node Dissection (RPLND). Definitely.

This morning Dr. Einhorn was not so sure. He said there is  a chance that following the HDC/transplant there may be no need to remove  my abdominal lymph nodes because they may already be gone as a result of the treatment. Say what? I can only keep up with so much of the science of my disease, and am thankful that experts like Einhorn exist.

What can I say? New things come up all of the time, and I generally chalk it up to my lack of expertise, and my doctor’s sheer volume of it — filling him up, as it seems to, to the point that he must lack certain other basic knowledge. Is he a poor driver? A horrible cook? It doesn’t matter. Just check out some of the papers he has authored or co-authored on very specific matters that have everything to do with my life HERE. (Of special note: document nos. 15 [Is full bilateral retroperitoneal lymph node dissection always necessary for postchemotherapy residual tumor?], and 16 [High-dose chemotherapy and stem cell rescue for metastatic germ-cell tumors] )

Another bit of new information: they want me to continue oral chemotherapy for three cycles once I am back at home. The drug is a common one to me now: Etoposide, or VP-16. According to the studies they have conducted here, continuing this oral chemo improves my rate of survival by 5%. The side effects will be minimal, mostly consisting of prolonged baldness, and I can live with that. I just hope my hair comes back at least to the not-so-thick-but-enough-to-stay-warm stage it was in before all of this went down.

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Bye Dawnie…I miss you already — but I’ll be home soon.

Hurry Up…And Wait

Posted in cancer, Cancer Life, testicular cancer with tags , , , on December 3, 2008 by lawler

What can you do when a big hospital like IUPUI is out of beds for patients? You wait. You wait some more. And then, full of apology, the hospital staff tells you they’re putting you up in a hotel for the night.

That’s right. I’m back at the now comfortable Candlewood Suites, alone, waiting for a hospital bed so that I can begin chemo.

So, a night of respite. I’ll write more tomorrow to confirm that I actually am admitted…

Day 15 (amended)

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

Over the course of the day, I have had one central question for the nurses and doctors here on the bone marrow ward. Essentially, it has been this: what is the one number, the one count of cells, that will be the primary determining factor for my release from this round of chemo hospitiliazation? Thus far, I have been led (perhaps purposefully, perhaps not) to believe that it was my white blood cell count that would lead me from this bed, this ward, this hospital, this city, this state.

After a confusing discussion with Dr. Schwartz this morning about this very subject, she introduced the concept of neutrophils. We talked about it briefly, and what I took from the conversation was, well, not much. Somehow I gathered that the number the doctors were really looking at was this neutrophils number, which is a number or percentage within the white blood cell number.

Okay, wait.

Neutrophils are basically the ass-kickers of the white blood cells. They do the dirty work, sort of like the first cops at the scene of the crime. We need them to walk down the street and stay healthy enough to make it to our destination. So, this is the number they really need to know about. But Dr. Schwartz explained it in terms of percentages, and almost seemed to be hiding my own holy grail from me. I sought a simple enough answer, I thought: what is the number you will be basing my release upon?

Later in the day, I brought the subject up with my RN, Kelly, who provided me a much clearer picture of the situation. The number they are really looking at (and it is based on the white blood cell number) is something called the Absolute Neutrophils Count (ANC). The number is derived at through the use of an equation that is beyond my understanding of any of this (see previous link). But what I know now is that they are waiting for two consecutive days when my ANC is 500 or greater, or a single day where it is 1,000. Today it idles at a mere 300 – but wait, that’s good too. Because remember for the past days, the past weeks, they haven’t really been in there at all doing what Dawn would refer to as “hi-yas” (aka karate chops).

Does everyone get it now? I’m just relieved to finally have been given a clear indication of what this waiting game is all about.

Oh, and if you are further curious, here is the the dry-erase board that has been tracking my blood counts since November 5:

Tracking Mike's blood

Tracking Mike

Indiana Moon

Posted in cancer, Cancer Life, testicular cancer with tags , , , on November 3, 2008 by lawler

Last night, as we neared Indianapolis, after having survived a couple of mildly harrowing incidents on the highway (a near side swipe with a speeding SUV, a tire blown out on the car ahead of us), I looked out across the fields to the west and found an orange sliver of a crescent moon hanging low in the sky.

I couldn’t take my eyes off of it as we sped along. Sights like that — nature at its most intriguing and beautiful — is a thing to be admired and remembered. And as life takes turns increasingly thought-provoking, it’s impossible to look away.

We (Jeff, Dawn, and I) arrived in Indy at about 9pm Sunday night. We ordered Chinese food delivery, and waited an hour or so for it to arrive. We were soon in bed, and almost as quickly out of it, making out way through the maze of hospital hallways, seeking out the Apheresis ward, where I would have my stem cells harvested.

The first surprise came quickly: I was not to be admitted to the hospital today. That had been a misunderstanding. The stem cell harvesting to take place on Monday and Tuesday were strictly out patient procedures. Say what?!? That threw us for a loop.

So, Dawn and Jeff went out, booked me a room for two nights, stocked the fridge (the hotel is the long-term stay type, replete with kitchen, and living room), and dropped my stuff off for me. The hospital arranged for a ride back to the hotel, and around 3pm Jeff and Dawn left — Jeff headed for Chicago to catch a flight, and Dawn back to Madison.

Later, I learned that they harvested enough stem cells for the entire chemo procedure, so that I will not have to go back to the hospital tomorrow. My dear friend Tara will be coming up from Cincinnati tomorrow to keep me company, stay the night with me, and get me to the hospital Wednesday morning, when I will actually check in and begin my first round of high dose chemo.

I’m sorry for the jumbled up nature of this post. Rest assured I will write more tomorrow with more details (oh boy, the central catheter placement was a blast!).

Love to all.

Indiana

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

Today was a bit hectic for me, so I’m just now getting around to writing a blog entry to let everyone know what happened yesterday at Indiana University. I started another post, but have abandoned it for the sake of time and brevity.

In a nutshell…

  • Dawn and I met with Dr. Williams at IU yesterday morning. He told us in a series of discussions that:
  1. He and Dr. Einhorn (the two of them are the leading experts on testicular cancer in the country) agree that I should undergo High Dose Chemotherapy with Stem Cell Support.
  2. I should receive the treatment at Indiana University because they have done it more than anyone, and helped develop the treatment.
  3. I need to start as soon as possible, which for me means November 3.
  4. I definitely (Dr. Williams: “one hundred percent”) need surgery after treatment. He told me to plan on having that done at IU as well, sometime in January after I recover from the High Dose Chemo (HDC).
  • The High Dose Chemo treatments require me to stay in Indianapolis for the better part of up to eight weeks.
  • I will receive two rounds of HDC, each lasting about three weeks, with one week to ten days off in between (fortunately, that will be Thanksgiving week!)
  • Statistically, I was told that the cure rate at recurrence is typically about 70% — however, Dr. Williams thinks that though I am a “complicated patient,” my chances are better than that. He explained that most men he treats have the disease spread more throughout their bodies, which makes it harder to treat. So, I’m grateful for that.

Of course, there are a lot more details than that, but I wanted to get the basics out to everyone. I am planning on doing the treatment in-patient at IU because they would only let me do out-patient if I had a full-time caregiver to stay with me in lodging in Indianapolis. Since I have to take a leave of absence from CTM, we can’t afford for Dawn to come down and stay the entire time with me.

So, there you have it. I’m sorry this is such a bare bones post. Rest assured, I will write more when I have time.

Love to all.