Tuesday
[Journal not posted until 7:45 AM on Wednesday because I had dinner last night with the team involved in the publication of a book about brain cancer.]
High-Level Journal Summary: An unexpected gift from a master craftsman and friend, David Larson. A to-scale, three-dimensional model of my brain tumor at the time of diagnosis. Instead of just imagining the size of this tumor or throwing it into the high-level bucket of "lemon-sized," I can now feel it in the palm of my hand. Further, the craftsmanship applied to this model is world-class, making it all the more remarkable and thought-provoking. Initial thoughts and reactions are shared in this journal entry.
Countdowns:
1.) Day 9 of 28 in my 17th 5/23 Temodar chemotherapy cycle.
2.) Bi-weekly hematology report on 2/4/07 to see how my blood levels are doing.
2007 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 6 days ago.
2.) In 2007, I have had 2 SPS's so far.
Actual Journal: While writing my 1/22/07 online journal entry, I was inspired to send the following message:
Date: Mon, 22 Jan 2007 22:37:02
From: David Welch
To: David Larson
Subject: Brain Tumor Project
David,
I looked back at some medical notes and saw that my brain tumor was originally 6.8 cm x 3.6 cm x 5.3 cm. Would you be willing to cut a block that size so that I can feel it in my hand and just know how big this thing was? I want to conceptualize it better.
Weird request #512,
David
I mean, there I was for the VERY first time, doing some real math on my brain tumor. I was calculating the rough number of cancer cells that were in my 6.8 cm x 3.6 cm x 5.3 cm brain tumor when I was diagnosed on 12/6/04. Doing some basic math helped me understand that the original number of brain cancer cells was about 100 billion, and after 50% of this brain tumor was removed on 5/5/05, I had about 50 billion remaining (as diffuse as they are within my brain).
But all this led to the question in the e-mail above. I basically wanted to hold in my hand a block of wood that was 6.8 cm x 3.6 cm x 5.3 cm. I had never thought to do this before. I just told myself that I had a "lemon-sized" brain tumor and left it at that. But, what did that really mean? What physical dimension did that really translate to?
Understanding my brain tumor better
The message I sent above was to David Larson, a master craftsman who has been doing carpentry for me for the better part of a decade. (We are actually uncles to the same 2 boys, so our family calls Dave our "carpenter-in-law.") I figured he might just grab a block of wood in his studio, make a couple of zip cuts, and drop it off when we saw each other next.
After sending the e-mail, though, I did not expect this work to be done, so I did other things, instead. For example, I went to Staples and bought a metric ruler so I could draw a block that was the size of my original brain tumor. I did that and got a better sense of actual size. And when I went to Whole Foods for groceries this past Sunday, I bought a lemon that seemed to be about the same size as the box I drew. That gave me more of a tactile sense of size.
3-D model of brain tumor
Today, I met with David Larson to pay him for some recent work. In addition to 2 invoices he had for me, he had an 8.5" x 11" piece of paper that was at 100% scale. It was my initial MRI revealing my brain tumor. From this MRI, he had spent an entire day making a to-scale replica of the visible brain tumor mass on 12/6/04. Whoa!
This wasn't just something that was thrown together in an hour. Being the humble guy he is, David did not tell me how much time he spent on this project (other than he chose to do this rather than personal taxes this past weekend). But, here are some of the remarkable features of this 3-D model:
1.) In the exact shape of the brain tumor, as revealed by Perfusion MRI.
2.) All the unique contours and shapes are detailed into the wood.
3.) The chosen wood is "spalted maple." This wood is most often used for fine pens and has multiple layers of colors, ranging from rings of dark brown to much lighter tans to colors inbetween. These color changes create unique ovals and patterns, in and of themselves.
4.) The dark brown in the spalted maple comes from a period when this part of the wood was actually rotting. Perhaps this makes spalted maple the perfect choice for this subject matter since brain tumors involve the permanent transformation of healthy brain tissue to cancerous brain tissue.
5.) Artistic license was taken to carve contours on all sides of the model brain tumor for a more realistic look and feel.
6.) The entire model was sanded with enormous attention to detail. (David had the scars on his hands to prove it.)
7.) 4 coats of polyurethane were put on it to protect the wood and make it as smooth as silk.
8.) This wood was taken from the wood collection of a craftsman and mutual friend named Ken Baker, who died in 2006 (see 3/30/06 online journal entry). As such, great sentimental value was consciously built into this piece. It is not just a block of wood. It is symbolic on multiple levels.
In the end, this model is like a work that might be found in an obscure fine arts show, selling for $400 or $500. Absolutely stunning. A gorgeous piece of art made by the best master craftsman I have ever met. (No offense, Ken. You were right up there, too.)
The irony. The reality.
The weirdest part of it all is when this model just sank into the palm of my hand and I wrapped my fingers around it. Yes, I realize that this is a model and that my real tumor is infusive, scattered about my brain like granules of sand. However, the metaphor was powerful. This was the very first time that I realized the true size of my brain tumor. It was powerful.
After David and I left, I held this model up to the scar on my left temple and wondered how something this big could exist in my brain and I did not know about it. How the hell could that happen? It blows me away. And then I thought about the fact that this tumor grew from just a single cell mutation that did not work correctly. It started at a microscopic level, went undetected for 5-10 years, and grew to something of this size. Totally unreal.
Premiere of brain tumor model
I took this brain tumor model with me to dinner this evening when I met with the team interested in creating and publishing a book on brain cancer, based upon my experience as a patient (our first meeting on this topic). I told them I had a "surprise guest" and pulled this thing out of my pocket. I just let people handle it and take guesses as to what it was. There were some good guesses, some guesses that were totally incorrect, and some guesses that were right on the money.
I also watched reactions as it was passed around. Reactions ranged all the way from fascination to not wanting to hold it because of what it represented...because of the fear of actually having a brain tumor. I did not expect to see all of these reactions.
Closing thoughts
I must say, I am very thankful for this gift. The brain tumor network of support knows no bounds at times. Who would have thought that a person of the talent of David Larson would devote much of his weekend in creating a model of my brain tumor?
This brain tumor model will travel with me. I will share it. It will touch many hands. Why? It takes something that is otherwise abstract and helps to make it tangible. That is powerful to me, and if it is powerful to me, then I am guessing that it will be powerful to others, as well.
Patients and caregivers will be able to read their own experiences into this symbol, and others trying to better understand brain cancer will at least be able to conceptualize one example of what a brain tumor looks like. It will be absolutely fascinating to see what conversations this opens.
