A MILESTONE ON MY JOURNEY WITH CANCER
In the world of cancer there are certain milestones or markers —
typically they are 1 year out, 3 years out, and the magical 5 years
out. As each of these crucial milestones pass, the likelihood of
cancer returning diminishes. And after five years being cancer-free,
you are considered “cured”. However, I think most people will say
there is no such thing. Because even after five years, there is still
a chance that your cancer could come back, or a new cancer could
develop. There are some guys in the Cancer Resource Center’s men’s
support group who have been on chemotherapy non-stop for literally years,
and there is no plan to stop treatment.
I am lucky. Today I get to celebrate a different kind of milestone.
The end of my chemotherapy treatment.
It was exactly nine months ago today that I went to see my primary
doctor, Dr. Law, with symptoms of initially intermittent blood in my
stool, to ultimately, expelling nothing but blood. It was that day
that things were put into motion, and my life was forever changed. At
first, things happened so fast. I had a colonoscopy the next day, and
then two days after that I learned that the results of the biopsy
confirmed I had colon cancer. The day after learning I had cancer I
met with my surgeon, and just two weeks after that meeting, I was in
surgery, having a section of my lower colon and upper rectum removed.
It was a whirlwind of events in such a short period of time. During
that time I don’t think I ever truly stopped to think about the
impacts. Partly because there were so many other things to focus on,
and all the doctors seemed very optimistic that surgery alone would
be all that I needed… but mostly because I didn’t want to stop and
think about everything. As I’ve told people, obviously no one wants
to get cancer, but I REALLY did not want it. I rejected it from the
very beginning — even just the mere notion of it. And when I was
initially told I would not need chemo or radiation, I was estatic,
because in my mind, it wasn’t REALLY cancer if I would not be
subjected to the self-poisining of further “treatments”. I just would
have an operation. I would escape the hell that so many have gone through.
Of course, dealing with the impacts of my surgery alone, nevermind
further treatments, was still no day at the park. I was in the
hospital longer than expected, vomitting just about anytime I tried
to eat or drink or even take my meds. I had excess blood that had
pooled in my body during surgery which caused me further pain and
complications. And I lost about 20 pounds during my nine-day stay.
However, I actually liked being in the hospital. Well, let me
re-phrase that. The staff at Cayuga Medical Center made my hospital
stay as enjoyable as any hospital stay could possibly be. The nurses
and nurse aides were attentive, extremely friendly, and really showed
compassion and care for me — even though they had a whole floor of
patients — many in worse situations than me. They stayed in the room
as I vomitted, helping to clean me up, and at night, I had frequent
trips to the bathroom, which required me to call for someone to help
me get out of and back into bed. You would think by the eighth or
ninth time during one night they would get sick of hearing that call
bell coming from my room. If they were, they never ever showed it.
And all of the staff made Jason, my partner of 12 years, feel just as
welcome. He stayed in my room throughout most of the day every day.
They got to know both of us, and always made sure we were both
comfortable and had everything we needed. I even had three or four
visits from two different hospital administrators to check to make
sure I was receiving the proper care, and giving me a chance to voice
any complaints or criticism of the care I was being provided. Of
course I had nothing but wonderful things to say about my care. And
even the dining staff — they were kind and accomodating when meals
were delivered to my room, or when they came to take my order for the
day, and on multiple occasions they fulfilled custom requests by me
to alter what was being offered on the menu.
These are all small things, but, truly, they add up to an overall
feeling of wellness. I had full confidence in everyone around me, and
was treated with such care, that it made a very scary time, so much
easier to get through.
Shortly after I was initially given the news of my cancer, Jason’s
parents called the house and talked with me. His mother had gone
through breast cancer, twice. She of course was worried as any mother
would be, and she understood first hand what the next months and
years might be like for me. She gave me words of love and
encouragement. His stepfather then got on the phone. His statements
were simple, but just as heartfelt. I remember he said to me, “Don’t
you worry about this — in no time it’s going to be three years later
and you’re going to look back and say, ‘wow, I can’t believe it’s
been three years already.’ You’re going to get through this and
you’re going to be just fine.”
During this journey of mine — one that I did not invite — but had
to take nonetheless, I have learned that patience is something that
doesn’t come easy or quickly. Normally in my everday life, I consider
myself to actually be a very patient person. But I learned that
although I’m quite patient with others — I’m apparently not nearly
as patient as I should be with myself.
I’ve always had a good handle over my life. Even through obstacles
(and I’ve had my fair share!) I dealt with them firmly and with
purpose — with an end goal in sight. And each time, I have felt I’ve
become a better person for it. It wouldn’t be how I would have liked
or how I would have planned it to be, but nonetheless, I always felt
like after each troubling event or tough time, after getting through
it, I thought, “well, it’s not how I planned it or wanted it to go,
but it feels right, like it was meant to be this way.” Like I
couldn’t get to this point, without making it through that
experience, whatever that experience may have been.
With cancer, I didn’t feel that. Well, at least not at first.
But about mid-way through my six weeks of radiation treatments —
when things started to get really bad — and when I would find myself
suddenly becoming emotional and crying over the smallest things — my
faith guided me to the acceptance that this too was meant to be. As
much as I had rejected the notion of being someone with cancer — I
did not want it — I did not want to be a cancer advocate — I did
not want to do the cancer walks — I didn’t want to do the cancer
groups — I rejected all of it. I did not want my life to be all
about cancer. I felt it had no place in my life. I just wanted to get
through this as quickly as I could and be done with it. But during
some of those especially difficult times I held on to the belief that
something was waiting for me on the other side of cancer. I didn’t
know what it would be, but I held on to my faith that there would be
a day that I could look back and say, “You know, I really hated that
part of my life, and what cancer took from me, and did to me, but if
it weren’t for cancer, such and such would have never happened, or I
would have never met so and so.” I still do not think I fully know
what that “such and such” is, or everyone who may be part of the “so
and so” … but it took a lot for me to even think about reaching
that point where I could feel OK about what was happening to me.
Cancer was not part of my plans. But it was given to me, and the only
way out is through.
When I finally made peace with the fact that I did need to go to a
support group, I am thankful for the volunteers of the Cancer
Resource Center of the Finger Lakes. Every day for six weeks I would
trek up to the hospital for my radiation treatment. At least twice a
week there in the lobby would be a volunteer from CRC, usually Joan
on Tuesdays and Skip on Thursdays. One Thursday morning following my
radiation treatment I decided to stop at the table where Skip was
sitting. I wanted to be as quick as possible. So in a manner that
almost conveyed like stopping to talk with him was just a minor
after-thought (rather than the overly rehearsed plan I had been
mulling for days that it was) I quickly asked, “Your men’s support
group — is that every week or once a month?” He replied, “Every
Friday at 8. I’ll be there! I hope you will too.”
And I was.
I can remember that day very clearly. I entered the restaurant with
trepidation. Though I don’t fully know why I was so scared. I guess
it was just another step of acceptance that I hadn’t planned on
taking. Cancer wasn’t something I wanted to accept — I wanted to reject!
The group was pretty much what I had expected it to be. Older guys —
most of them retired. But I sat down anyway. Because I was a newbie,
everyone did their introductions, but of course that first meeting, I
didn’t remember all of their names or who had which cancer (I do know
them all now though!)
And when it came to me… that wave of unexpected emotion hit me
again. But Brian who was sitting next to me, gently put his hand on
my back, without words saying, “I know it’s rough, but it’s going to be ok.”
Small gesture. Big impact.
The brief hand on my back from a complete stranger really symbolized
what that group is all about. It is an environment where you can feel
safe to cry if you need to, or bitch and complain if you want to, or
just be among others who are going through, or have been through,
very similar experiences. And within an hour, as the group was
wrapping up, I knew I would be coming back.
A week or two later, after coming out of my radiation treatment Kerry
from CRC was in the lobby with the Tuesday morning volunteer Joan. I
had met Kerry before, so she called me over and gave me a hug. I had
only seen Joan in the lobby every Tuesday morning, she always gave me
a warm smile as I walked into the building, but I had not been
introduced to her until that day. Kerry asked me how the support
group was going. I told her very honestly, “Well, it was at first
what I expected it to be, me and a bunch of old guys.” She laughed.
But I quickly continued, “But, those ‘old guys’ are some of the most
compassionate people — and FUNNY. I really like them and consider
In our group, I’m definitely the youngest, at 33, and the ages of the
guys go all the way up to over 80 years old. It just so happens that
the youngest in the group and the oldest in the group both had colon
cancer. Yes, it’s weird to have the most in common with the oldest
guy in the group. But I have to tell you, he is truly one of the
funniest guys among them. He always comes out of left field with
these comments or does something so outrageously unexpected that the
whole table is near tears with laughter. He’s actually been ill for
the last few weeks and hasn’t been to our breakfast club. I hope he
is able to get back to good health soon, and can join us again. His
presence is missed by us all.
A quality of the men’s support group, or “breakfast club”, that I
very much value is that it’s not all cancer talk all the time. Many
times we’re just talking about our weeks, or other, some would say,
more important, things in our lives. We’re joking and laughing. So
some Fridays the words “cancer” or “treatment” or “radiation” or
“chemo” is never even uttered. I, for one, find that refreshing. It
shows that cancer is NOT our whole life. But yes, it is a part. There
are other Fridays where cancer and how we’re feeling or how someone’s
treatment is going takes up the entire hour. And that’s good too. The
guys sitting at that table are there for you if you need or want to
talk about how cancer is affecting your life. But they show that
they, like me, have many more things in their life that are valuable
and worthwhile, and important to them. You actually get to know each
person as an individual, and not “the guy who has lung cancer” or
“the guy who just had surgery for his prostate cancer”.
Following my first time at the breakfast club, Bob, who is the
Executive Director at CRC, offered to put me in touch with some other
people who have had colorectal cancer. (Initially I was told I had
colon cancer, but later learned that technically it should have been
called rectal cancer. Though the cancers are the same — it’s all
about precise location. Because they’re the same type of cancer,
colon and rectal cancer is sometimes used interchangably, or combined
into one term: colorectal cancer).
Both of those people who Bob had arranged to email me told me the
biggest thing about getting through all of this was patience. I
learned you can’t teach patience. You can’t just tell someone to be
patient and expect them to be able to immediately comply. Even
patience takes some, well, patience! During that time, I was having a
really rough go of things. I had the urge to go to the bathroom
extremely often — like several times an hour — but most times
nothing would come out. I was “clogged up”. I was hungry, but
couldn’t eat, because literally more than two bites would have me
feeling bloated and sick. I was miserable. I had tried every stool
softener and laxative ever made. And when one of them finally seemed
to do the trick, it came at a very painful price — incredible abdominal pains.
I was miserable. I thought, “This is the way it’s going to be forever.”
There were a few nights that I cried to Jason and told him I wish I
had never had the surgery.
My life centered around the bathroom. I felt like I was chained to
the toilet. I dared not to commit to any social activities — and
sometimes I admit feeling “guilty” over “playing the cancer card” and
staying at home rather than being with friends. I eventually got over
that guilt though. Another layer of acceptance. The fact is that I
was/am dealing with cancer, and if I felt like I needed to stay in
bed the whole day, I gave myself permission to do just that.
Things did eventually turn around, but again, it had a cost. Oddly
enough, my “turning point” took place at Cayuga Medical Center. What
should have been a routine CT scan, about an hour at the hospital,
turned into a nearly five hour ordeal that ended up with me wearing
an adult diaper and hospital scrubs, sitting in a chair camped out in
the hospital bathroom. Before that day, I had experienced loss of
bowel control three times that week. I had actually cancelled my
radiation treatment the day before due to the fear that I would not
be able to make the drive to the hospital without — sorry to put it
so crudely — crapping my pants. Dr. Cho, the wonderful radiation
oncologist, talked to me on the phone and gave me the rest of the
week off. That day I also had an appointment with my regular
oncologist, Dr. Bael. I called his office to cancel the appointment
for the same reason. His office called back a little while later and
said that Dr. Bael wanted a CT scan. He was concerned about this new
symptom. After all, I had been battling constant constipation for
months (even though most people following colon resection surgery
experience diarrhea — not constipation).
It’s humiliating enough to lose control of your bowels when you’re in
the privacy of your own home; it’s even worse when it happens
somewhere else. However, I’m thankful that if it had to happen when I
wasn’t at home, that it happened while I was in a hospital. Once
again, the nurses there were amazing. They were thoughtful,
sympathetic, caring, and attentive and accomodating to whatever I needed.
Four hours of non-stop diarrhea in a hospital bathroom is typically
not considered a good day. And it wasn’t, believe me. But, it was a
turning point, so in some ways it was a good day. It’s like my body
finally flushed all that crap (literally!) out of me. And after that
day I was no longer as constipated as I was before. Going to the
bathroom was still a chore — and even now it still takes quite a bit
of effort — but at least it’s productive. And I was making visits to
the bathroom literally 20-40 times a day back then. It was a good day
when I finally got it down to about 10 times a day. Lately I’m
averaging about 5-9 times a day. Still quite a lot. My goal is to get
it down to 3-5 times a day, which will likely permanently be my “new
normal” — a shorter colon means more bathroom trips — it’s just
the way it is.
But emotionally, for me that day marked the start of my body fighting
back — fighting to regain some stability and normalcy. And I could
finally see progress. And the tides turned. Everyone in my support
group had remarked on my complete change in attitude — and in such a
relatively short time. And even I can see, I’m nothing like that
scared guy who walked into the restaurant that Friday morning some months ago.
Patience was, and continues to be, the hardest thing.
And now… as I celebrate this milestone of the end of my
chemotherapy treatments, it’s hard to believe it’s been nearly a year
already. I do feel in many respects the last year has been stolen
from me. But in it’s place I have gained quite a bit. Not the least
of which is a group of new friends that I would have never met had I
not gotten cancer. I also gained an even greater appreciation for the
community in which I live. Ithaca is great place to live on so many
levels and for so many reasons. But this journey re-inforced for me
how wonderful the medical community is here. And how lucky I am to
have received all my excellent care right here in Ithaca. I cannot
say enough good things about my entire medical care from everyone
I’ve interacted with. I just don’t think I could be able to say the
same thing if I was still living in Northern Virginia. Perhaps
technically the treatments would be the same — I’d be going through
the same motions. But the people providing it, and in the manner in
which they provide it, I know that would be different. And when it
comes right down to it, I believe the people who administer your
healthcare can many times have a larger impact on you than the pills
or treatments can have. What my doctors — every single one of them
— did for me is allow me to feel a sense of some control over my
treatment. Which for me, is huge. What can I say? I like to be in
control of things. And while I could not control getting cancer, I
wanted to be the one in control of how I was going to fight it off,
and overcome it. They gave that to me.
So for now, I think I have an even greater appreciation for people —
all kinds of people — and I’m learning (it’s a process!) to be more
patient with myself and with my body, which is still adjusting from
the trauma of surgery, radiation, and chemotherapy. I’m also learning
to more often give myself permission — for whatever it may be.
Throughout it all though, I have been, and continue to be oh so
thankful for all my blessings: friends, family, the ability to
receive quality healthcare without financial worries, and for now
being part of yet another great community — a community of cancer
survivors and those who are advocating for them, providing support to
them, or medically treating them.
Life is good.
Time to celebrate!