Archive for Dr. Lawrence Einhorn

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.

Surviving is a Journey

Posted in cancer, Cancer Life, testicular cancer with tags , , , , , , , , , on August 31, 2009 by lawler

*I wrote most of this post a couple of weeks ago. It never felt quite right at the time, so I didn’t post it. But…when is my writing ever quite right?

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Satisfied

Oh, I didn’t die

I should be

satisfied.

I survived

It’s good enough for now

Wilco, “Sky Blue Sky”

I heard these lyrics the other day in the car. I’ve heard them before, of course, but sometimes such things stand out — or we hear them in a way that seems as if they should stand out. Anyway, the sentiment sounded about right. Over the last two years life has taken on a new meaning. When someone (preferably a medical doctor of some kind) tells you that you have cancer, you react in a perfectly natural way, asking and acting on a basic question: how do I survive? No time for splitting hairs over the meaning of life, or what you have to live for, really. You just know you want to live and go about finding the path that will take you to the place where life goes on.

Once you’ve found that place things get complicated again. I’ve spent a lot of words here on this blog and elsewhere espousing all sorts of ideas that cancer has either given me or forced me to consider. And now that I’ve emerged cancer-free (for the second time) I find myself struggling a bit to hang on to the ideals that I discovered were of paramount importance to me when I was sick. [The other day I forgot one of the three things I pledged to accomplish this year — what was it again? Get Healthy, successfully launch Wisconsin Story Project, and…and….oh yes, Live Purposefully–I actually had to look on my own blog to remember that third one. Yikes.]

The thing is that it’s not easy living up to your own ideals once you’ve actually had to say to yourself some version of “this will not kill me, I want to live.” Because saying that — if even to yourself — is the same as saying that there is not only something to live for (that’s easy: love, sex, beer, ice cream, et cetera), but that life itself is embraceable, that it’s not only worth it, but that it’s going to be good, that it’s going to bring happiness and something more valuable than what you’ve found in sickness — comfort, perhaps. Contentment.

What follows is a kind of greed. A demand that things be better than ever, and an inability to overlook the areas of life that bring dissatisfaction or somehow don’t live up to the ideal you settled on while sick and proclaiming life so worth living that you would endure a walk across the surface of the moon barefoot — even if it were paved with broken glass.

I’m sure this is a common ailment with a clinical description. No matter. For practical purposes it is simply another area of life to stare down.

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Prognosis: Negative

[sorry, couldn’t resist a bad Seinfeld reference there]

Recently, in our exploration of adoption, I asked my oncologist here in Madison to write a letter for our dossier that stated whether or not I was healthy enough and had a good enough prognosis to be the adoptive father to a child.

This is, in part, what he wrote:

Letter

Dawn and I looked at this brief letter and asked, in a bit of amazement, “Fifty to seventy percent?!?”

“Those aren’t great numbers,” Dawn said.

I haven’t had a chance to ask Dr. Arbaje about this specifically — frankly, I’m unsure how to do so. “Are you sure you aren’t confusing me with more typical bone marrow/stem cell patients,” I might ask, “like those with Leukemia and Lymphoma?” I will see him again in a few weeks, and plan on asking him.

We now have a letter in hand from Dr. Einhorn. His specific expertise in testicular cancer as well as his familiarity with my “difficult” case (difficult is not my word — it has been used about my cancer by more than one expert) has given us a clearer picture of my ability to be an adoptive father, and a much better prognosis:

Einhorn Letter

Right off the bat, this letter attests to a current cure rate of 80% — already higher than Arbaje’s stats. It goes on to state that as of the first anniversary of my first bone marrow transplant, my cure rate sky rockets to 95%. Am I being defensive? Your gawd damned right I am. I have put my trust in the hands of medical professionals to a great degree over the last two years, and I have a funny feeling that one of those people didn’t do his homework. That bothers me.

Perhaps needless to say, this is the letter we have passed on to the adoption folks.

When we asked Dr. Arbaje earlier this month (in person) what he thought of our interest in adoption he said a few things and then asked Dawn point blank, “Are you prepared to be a single mother?”

We were stunned. We have always had the utmost respect and admiration for Dr. Arbaje, but recently feel as though he has lost some of his ability to properly filter. Although we have appreciated his frankness in the past, the latest information coming from him regarding adoption seems overly pessimistic. Is he trying to protect us? Does he believe that we are too optimistic or are simply unprepared for parenthood?

Okay, so how do I wrap this all up? I should be working on a paying writing gig as I finish this up, so why don’t we end on a…

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Happy Note

Wisconsin Story Project and our Cancer Stories production are moving assuredly along. We have tentatively reserved performance dates for May 2010, and I will keep everyone posted on exact performance dates and times very soon! We also hope to have an art exhibit up in the Overture Center that is tied into Cancer Stories that will run much longer…keep you posted on that too. Thank you to everyone who has supported WSP and Cancer Stories in anyway — and if you haven’t shown your support, there is still plenty of time! Go to wisconsinstory.org and have a look around — find out about the company, Cancer Stories, our upcoming podcast series, and check us out on Facebook and Twitter while you’re at it!

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.

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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.

Indiablogopolis

Posted in cancer, Cancer Life, testicular cancer with tags , , , , , on February 1, 2009 by lawler

Dawn and I are back in Indianapolis.

It’s 9:30pm EST.

We have to be at hospital admitting at 5:30am!

So…I’m going to bed soon.

My surgery is scheduled for 7:30am.

I expect to be out of it (or, as Dr. Einhorn said, “schnockered”) for all of Monday at least.

Dawn will put up a post for me tomorrow to let everyone know how it went.

Wish me luck.

Goodnight.

today is Wednesday

Posted in cancer, Cancer Life, testicular cancer with tags , , , , on January 7, 2009 by lawler

Okay, as of today we know this: I am scheduled to have surgery to remove the remainder of the tumor in my abdomen on February 2 in Indianapolis. Dr. [name withheld] will preside over the not-to-be-missed proceedings. They tell us that I will be in the hospital three to five days. I’m hoping to be out in two.

Before that I am meeting with Dr. Einhorn for post-high dose chemo evaluation and will also have follow-up blood work and CT scan.

As you have come to rely on, I will keep you posted.

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…

100_8500

100_8507

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).