Mitch's Story
(Originally posted
in 2003, updated in March 2008)
Preface
When I was 22, my sister (26) was diagnosed with germ-cell ovarian
cancer. We were told there are many different kinds of ovarian cancer
and this was the "best one" to have because it was curable. The cure
was a regimen of chemotherapy that lasted three cycles of drugs called
Bleomycin, Etoposide, and Cisplatin. This regimen was actually borrowed
from the treatment of testicular cancer developed in the early 80s that
has been so successful. It was a trying and scary time for my family,
but after some baldness, lots of nausea and exhaustion, my sister was
indeed cured. In fact, she gave birth to a healthy boy less than 2
years later and is currently expecting another boy in October 2003.
UPDATE: She had a second healthy boy in September 2003, and a healthy
girl in January 2007.
Bring It
Summer 2002. Life was perfect. I was entering my final year of law
school. I was recently selected to be an editor of the Law Review. Had
a great job lined up for after school. I was in New York for the summer
near my family; working on interesting legal matters for a great law
firm; seeing old friends; meeting new ones; and overall on top of the
world.
Then one day I woke up and felt a dull ache in my groin. I thought I
just strained a muscle. In a couple of days it went away…and then it
came back. I did a self-exam in the shower (as I have done for years).
I felt a hard marble on the front of my testicle and I knew what it
was. Being a sports fan, I remember when John Kruk was diagnosed, and
Mike Lowell, and of course, Lance Armstrong.
I knew I could not mess around. I made an appointment with the
urologist. The couple of days before I went, I researched the disease
and was completely prepared for what the doctor was going to tell me.
Except of course, you can never really be prepared for something like
this.
After the exam, the doctor told me there was a mass in my left testicle
that was "suspicious." "SUSPICIOUS!?!," I said, "It's not 'suspicious.'
It's cancer! What do I do now?" I didn't mean to lash out at him, and I
understand he was trying to break the news gently to me, but that
wasn't what interested me. I wanted to know how quickly I would be able
to beat this thing and go to DC for work. It was July 29; I was
supposed to be in DC August 5th for another job, and back in Chicago
for the start of Law Review by August 28th. I just didn't have time for
cancer.
The doctor sent me for an ultrasound and drew blood. I called my family
and told them that I had testicular cancer and needed surgery.
Certainly this was the hardest thing I ever had to do. It made me
really understand the difficulty that doctors must have telling someone
the news.
That day was crazy as I was dealing with Law Review conference calls
(we were selecting the new members that very evening), speaking with
the summer coordinators at the law firm where I was working (the entire
firm was amazing throughout my entire ordeal), and figuring out my
schedule for the rest of the summer. I also had to tell my girlfriend —
not exactly a pleasant conversation.
My sister contacted her oncologist, who recommended a surgeon from whom
to get a second opinion, and who would end up doing the surgery. He
confirmed what the first doctor said, and I scheduled the surgery for
the following Monday. He also sent me for a CT Scan to determine if the
cancer had spread anywhere else in my body.
I had to look at myself in the mirror and say, "Mitch, you have
testicular cancer," until I actually believed it. Once I literally
faced reality, I was ready.
Surgery #1: The Orchiectomy
Physically, the surgery isn't as scary as it may seem. They basically
make the same kind of cut as if it were a hernia operation — a small,
2–3
inch incision right above the bikini line. Psychologically, it is
terrifying. I began reading other TC patients' stories. It seems like
many men who have gone through this have a great sense of humor about
their predicament. I remember watching Tom Green's MTV special about
his ordeal. There was the story about the guy whose friends began to
call him "Mounds." (Instead of Almond Joy.) My favorite story is about
former Philadelphia Phillies first baseman John Kruk that I read on the
TC Resource Center:
"Because he was still undergoing treatment and was admittedly very
tired, the Phillies did not want him to play until completely
recovered. Kruk, a fierce competitor complemented by one of the best
public senses of humor, was outwardly critical of the Phillies
position. The day before the home opener he was seen taking batting
practice wearing a t-shirt that read: [Front] If you don't let me
play... [Back] I'm going to take my ball and go home."
So I decided that I needed to lighten up a bit. I mean, it's surgery,
and it's not exactly the best predicament in the world, but I had to
get
past the self-pity.
I had decided that I was going to have a prosthetic implant. When I
walked into the OR for the surgery, I asked my doctor what the
prosthetic was made of. He responded that it was a saline mixture. I
asked if they could put metal in it. He looked at me like I was crazy,
so I said, "This way, when I tell people not to [mess] with me because
I've got balls of steel, I'll be half right." He laughed and I knew I
would be fine.
The surgery lasted about one hour. When I woke up I was a little sore,
but not too bad. I was very thirsty and the nurses gave me the best
apple juice I have ever tasted. I was a little nauseated, but they gave
me some meds for it. I was released from the hospital later that day.
The next week was spent in anticipation. The pathology would show if
there had been any invasion to the rest of body, and would show the
type of cancer cells.
Waiting…and Diagnosis
The results of the pathology came back, and it was non-seminoma. The
initial reading (done by the surgeon's radiologist) also showed that
there had been little-to-no invasion to my abdominal lymph nodes (they
were 2 1⁄2 cm instead of less than 1 cm). I would probably need the
RPLND. My surgeon referred me to Dr. George Bosl at Memorial
Sloan-Kettering Cancer Center in New York.
Before going to Dr. Bosl, I decided to bank sperm. The treatments could
affect fertility, so I wanted to be safe. Let's just say that going to
a
sperm bank is one of the oddest experiences I have encountered. The
place was very private — they did it by appointment and so I did not
see
any other customers and no other customers saw me. Then I filled out
lots of paperwork. My advice is to read all of this or bring someone
with you to read it. It is very complicated and you really want to
understand what is going on.
Then, I was taken on a "tour" of facility, which culminated with a tour
of the "staging room." There was a large leather chair (there was NO
WAY, I was going to sit on it), a sink, a counter that contained a
specimen jar and lubricant, a TV/VCR with many videos, and a stack of
magazines. The manager closed the door and I was left to do my
business. So there I was in the room and I knew that in the waiting
area, the manager, my dad, and the receptionist were waiting. The first
time was very stressful, but the next two (they recommend banking three
times) were quite comical. There is a musical about Testicular Cancer
called Turning Thirty by Tom Willner that has a very funny song called
"Masturbating in a Cup."
So, anyway…I met with Dr. Bosl and he informed me that the invasion was
more than the other surgeon had thought (one example of why it is so
important to go to an expert like Dr. Bosl and get second opinions). My
lymph nodes were actually 7 1⁄2 cm and I would not be a candidate for
the lymph node dissection until they shrunk. I needed to start
chemotherapy immediately. I was given the choice of 3 cycles of the BEP
that my sister had gone through, or 4 cycles without the Bleomycin. The
Bleo was considered the most toxic drug and it really made her feel
awful. I opted for the four-cycle plan. Each cycle would be five days
of intravenous therapy followed by two weeks of rest. Fortunately, Dr.
Bosl had a colleague whom he respected greatly in Chicago. Dr. Bosl
would contact Dr. Vogelzang who would take over my case while I went to
school.
Waging the War
I contemplated calling the Editor-in-Chief of the journal to resign my
position on the Law Review. I thought I would be too tired and would be
a burden on the rest of the board. I spoke to the EIC briefly about
this, but he assured me that any slack could and would be picked up. I
was still concerned. We were publishing a special issue that would
already take extra effort from everyone.
I did some soul searching and I decided that I was fighting a war. The
cancer had invaded my body, but the war would be fought on three
fronts: the physical, emotional, and psychological. I could not give in
on any front. I had to live my life and not let the cancer stop me from
doing anything. I was going to take a full load of classes, keep my
position on the Law Review, and beat cancer. It would be hard, but I
would win.
But first I needed a uniform — a green camouflage bandana. And a
mascot — my friend got me a stuffed bear with the words "Cancer Sucks"
written across his chest (available at KibbyBears.com). I wore my
battle attire and brought my mascot to every chemo treatment. I shaved
my head before my treatment began and I was ready.
I did my first round of chemo in New York and then the next three in
Chicago. My parents came with me to all of my treatments. In New York,
we watched movies, ate lunch, and talked. Fortunately, I didn't have
much nausea. I was extremely tired over the weekend, but all in all, it
was rather uneventful. In the world of chemo, uneventful is perfection.
Chemo in Chicago
Going back to school was scary. Many people knew what I was going
through, but many did not. I did not want to be "that guy" who people
spoke about in hushed tones. I was also nervous of what the chemo
center would be like in Chicago. But, my dad was going to fly out to
Chicago to be with me during my treatments.
I walked into the chemo room for the first day of my second cycle and
met the woman who would be my angel, Sharon. Our first meeting,
however, wasn't the best. I had a blood test in the morning (as I did
every Monday of my chemo weeks, to check my white blood count). The
test showed that my white count was too low to get chemo. It seemed
like another setback. I had mentally prepared myself and pumped myself
up to get my chemo, and so it felt like a letdown. I would have to
change my cycles and take three weeks off in between cycles in order to
let my white count build up. If, after three weeks the count did not
reach an acceptable level, I would have to get a shot to help my body
produce the cells. Moreover, this cancer thing was going to take longer
than expected.
The next day was the one-year anniversary of September 11. Initially, I
was going to miss all of the remembrances because I would be in chemo,
but that was no longer the case. After attending a tribute at my school
for the victims of 9/11, my Dad and I decided to do something very
American. So we went to Wrigley Field to watch the Cubs. Baseball is
still the greatest game and an amazing way to spend a few hours,
especially when you can enjoy it with your father. I recall how
baseball helped heal New York in 2001, and I believe that in 2002, it
helped heal me.
The following week I returned to the chemo center and received my
treatments — as I would for the next couple of months. Besides Sharon,
my
main nurses were Mary and Sarah. We had lots of time to chat and get to
know them. I'm not exactly sure how to express my gratitude to these
amazing women. They made chemo a positive experience. They are
extremely skillful, knowledgeable, friendly, and calming. They do their
jobs with such care and love that their spirits help people beat cancer
as much as the chemo does.
Throughout the quarter, I also realized the beauty of my school and my
friends. My professors were extremely understanding and supportive.
Classmates offered to do everything in the world you could
imagine — driving me places, taking notes for me, doing laundry,
shopping, cooking, making me laugh, knitting me hats, etc. The
administrators of the school did everything possible to make things
easier for me. I had friends from undergrad fly from all over the
country to Chicago to hang out with me just to make sure I was all
right.
Family and friends are so important during cancer treatment, as is
staying "normal." During my treatment, I still went to hockey games,
the opera, flew to NY for my sister's 30 birthday, and sort of lived my
life.
In addition, every couple of days I would read some of the online
stories of people who had TC, or read some of the posts on cancer
message boards. I never posted, but it helped so much to hear about the
ways in which others were coping.
The Decision
I had a post-chemo CT Scan in Chicago, but had to wait a week before
coming to NY for my appointment with Dr. Bosl. When he had initially
seen me, he showed me where the enlarged lymph nodes were on the scan.
Since I had the new scans, I decided that I would be able to determine
if those lymph nodes in fact had shrunk or were still enlarged. In
other words, whether the chemo had worked. I found the sheet that
showed my abdomen and found the area with the enlarged nodes. What I
saw looked like they were still enlarged. I was freaking out. I thought
I was going to have to go through high-dose chemotherapy.
I went to Dr. Bosl and he said that the chemo worked perfectly and my
nodes looked about normal. I asked him if he was sure, that when I
looked it seemed like there was something there. OK, so get the
ridiculousness of the situation: Here I was, after zero days of Medical
School, telling the world expert that I was questioning his diagnosis.
It turns out I was looking at the scans backwards. I think I will stick
to law.
So now that the scans and blood tests came back negative, there was an
80 percent chance that I was in complete remission. But there was a 20
percent chance that there was still a microscopic teratoma or live
cancer. I could have the RPLND to determine if there was still cancer
(if there was, then I would need more chemo), or I could go on a very
strict surveillance program.
My mother put the numbers in an interesting way. 20 percent or 1 in 5
is like Russian Roulette. Would I be willing to play that potentially
deadly game? So I met with the world expert Dr. Sheinfeld to schedule
the RPLND.
Surgery #2
I finished my finals, and three days later I was in the hospital for my
operation. I arrived for the surgery early in the morning and was quite
nervous. I had my bandana, and mascot in hand. I walked into the OR and
there was a large team ready for me. I remember waking up after the
surgery and seeing Dr. Sheinfeld, who told me everything went well. He
was able to do a complete cancer surgery and perform the nerve-sparing
technique.
The next couple of days are a blur with images popping in and out. A
couple of friends came to see me, but I was rather delirious on
morphine. I was given a button for self-administered morphine. I guess
I was a bit out of it because anytime someone spoke to me, or I moved,
or I spoke, I felt the need to push the button. I wasn't in pain, but
there was a button to push, so I pushed it. Needless to say, they took
the button out of my hands so I actually had to reach for it if I was
in pain.
During my third night, I started to run a high fever (104). I was given
a transfusion and after a stressful night (a night that my dad
considers the worst, but one I hardly remember), my temperature began
to come back to normal. In the hospital, I did a lot of walking,
sleeping, and waiting for the pathology results.
On the morning of December 26, Dr. Tash (one of Dr. Sheinfeld's amazing
fellows), came into my room, and woke me up to tell me that the
pathology came back completely negative. I had no cancer. I didn't
really understand what she was saying. In that moment, I went from
cancer patient to cancer survivor. Since I had been on so much morphine
I asked her if I was actually hearing what she said. I also asked her
to write it down and tell a couple of the nurses in case I went back to
sleep and thought our conversation was a dream.
It was no dream; it was an amazing reality. In a couple of days I was
released from the hospital, still sore, and on Dr. Sheinfeld's 5
grams-of-fat-or-less a day diet. I spent a marvelous New Year's Eve
with
my family.
Survivorship
I actually found survivorship a bit difficult. For six months, so much
of my life was about cancer. You always read these stories about people
who learn so much about themselves and the value of life through
cancer. I was waiting to smell a flower and magically realize the power
of life. I was looking to rediscover the beauty of the world. I was
searching for that spiritual moment where I discovered the meaning of
life. None of this happened and I was getting frustrated. My hair was
coming back, my soreness was starting to go away, but something was
missing. I felt like an idiot.
I slowly realized that I needed to get back to being myself. I needed
to stop defining myself simply as a cancer survivor. Sure that was part
of me, but that wasn't the complete me. As I wrote in an article that I
submitted to the law school newspaper: "We all have our problems and
obstacles to overcome. Mine happened to be cancer this year. I don't
mean to minimize it. After all, for anyone who has gone through it,
cancer is one tough enemy. But, I have my life to live. I have places
to go, people to meet, relationships to establish, and yes, flowers to
smell."
So I go to my doctors for blood tests and chest x-rays. I stop in to
see my nurses when I can. I am back to playing softball, competing in
fantasy sports, worrying about the minutia of life, arguing about
politics, and living life. I still have my daily reminder of my cancer
war when I look down at my abdomen to my large scar. Some of my friends
still call me the BOS (Ball of Steel). And I try to spread the word for
men to do monthly self-exams.
But the bottom line is that once again, life is perfect — because I am
living it.
Final Note
The doctors were and are still baffled that my sister and I both had
the same basic kind of cancer (germ cell). TC is not thought to be
genetically linked. We are participating in a study to try to determine
if that is accurate. Either it is genetically linked, or our parents
should play the lotto because they are due for some really good luck.
If you have any questions, please feel free to contact me on the
TC-Cancer.com Message
Board (Mitch).
2008 UPDATE
Well, it has been five years since I was declared cancer-free. Life is
great. I now see the doctors once a year. I am healthy and in the best
physical condition of my life. My scar has faded, and finally days go
by without cancer being on my brain. The Cancer Sucks bear still sits
proudly on the shelf, and the green banana hangs in triumph. My sister
and I still participate in the genetic study, but we haven't heard
anything yet. Her two young sons will certainly be instructed on
self-exams as they get older.
I have met many men who have gone through TC. I told a co-worker about
my experience with TC and emphasized the need to do self-exams. The
next day he asked me for a referral to a doctor. Fortunately, he was
able to catch it early and did a couple of rounds of preventative chemo
followed by strict surveillance. We have become great friends, and he
is completely healthy.
The first time I read the message board on this site was when I was in
the hospital recovering from my RPLND. For a long time I was a regular
contributor. It was very therapeutic and I met some wonderful people.
Then it was time to move on and let others find the therapy in
assisting those going through TC. I still pop in from time to time, and
while the names have changed, the care and wisdom of the board remains.
I thank you all for keeping this going — thanks to Scott and Teri and
Niki and TCMom (the first user whose posts I read in the hospital). And
especially thank you James.