“How are you feeling?” I get asked that a lot lately. You
see, I was diagnosed with prostate cancer last July. That diagnosis was the
result of me noticing a pink hue at the beginning of my urine stream a few
months before. Tests ensued. Two PSA tests returned PSA numbers of 16 and 16.1.
A complete bone scan came back clean – as did a bladder scope and CT scan
(except for a barely detectable and deemed negligible spot on my liver). The
needle biopsy was a different story.
Out
of 12 core samples, 4 came back positive – two of which were deemed “atypical”.
This was verified by a second analysis at Johns Hopkins. It seemed that the
best course of action was to have a radical prostectomy via the Davinci robotic
method. Surgery was Sept 15
th.
The procedure went without a hitch, with initial pathology reporting
clean margins and lymph nodes. After a week of a catheter, I healed pretty
quickly and returned to work. In January, I took my initial post-operative PSA
test.
Anything less than 0.1 would
report a successful surgery. I got a 0.9.
It is actually pretty common for post-operative PSA to go undetectable,
only to start creeping up over the next couple of years and requiring some
radiation therapy. Less common (and more concerning) is for the PSA to persist
– or to not go undetectable initially after surgery. That would be my lot. More
work to do. I am now a few weeks into IMRT Salvage radiation along with hormone
therapy of Fermagon and Lupron. That, in a nutshell, is my medical diagnosis
and treatment history to present.
So, how am I feeling? I actually feel pretty damn great. So
far, I am managing the side effects of my treatments well – with no major
complaints. And only a few minor ones. The thing is, am pretty confident that I
was “sicker” before being diagnosed with cancer than I am now. A few years ago,
I had pretty much made up my mind that I had met all the people that I needed
to meet. Everything had become routine and I was mostly going through the
motions of day to day life. Well on my way to becoming a grumpy old man. Even
the diagnosis of prostate cancer didn’t faze me all much. Pretty common thing
for guys to get it, get the surgery, and continue life as normal. I was sort of
worried about the IV needle – I hate those – but otherwise resigned to do the
deed. Recovered well and went back to life. Only it didn’t work. My PSA came
back elevated and I began to hear words like “ductal “, and “salvage”, and
“persist”, and “high risk”, and “biochemical failure”. The word “cure” was very
non-ceremoniously replaced with the word “manage”. It became pretty clear that
all guarantees were now null and void. A strange thing happened when I realized
that. Nothing was routine anymore. Every day and every event suddenly became
its own unique adventure. A thing to savor. And I then realized something else.
Those guarantees never really existed anyway. We all know this in the back of
our mind, but we try and not think about it. For me, it is now front and
center-not to dwell on, but as a gentle reminder to take stock of each and
every experience and interaction that I have the opportunity to participate in.
When I ask someone – be they friend or stranger – how they are doing, I
actually pay attention and care about their reply. I find it much easier to be
in the moment – whether it is enjoying a sunset with my wife, or the soothing
chill of being on a boat at full plane first thing in the morning – peering
around each bend with the anticipation that I had as a kid on those special
occasions when my dad would keep me out of school to go fishing. Enjoying a
cold beer on the porch while watching and listening to the birds frolic. Did
they always sing that loud?
03/07/16
I guess I was a bad patient today. After my radiation dose,
I hopped off the table while it was still raised up. That caused my therapist
to remind me how I could hurt myself, and I needed to wait until it was lowered
so that I wouldn't fall. Now, as a practical matter, I get his concern. I was
an EMT/Firefighter for 12 years and fully get the need to not let patients hurt
themselves, but being a patient sucks. I have no complaint with my care-it is
beyond reproach - but after a lifetime of raising a family, caring for my
parents, and trying to help others, being a patient sucks. The physical part of
this cancer journey has had its moments (bladder scope, fermagon to the belly,
to name a couple) - but the surgery wasn't especially bad, i don't guess. I am
on my 4th week of radiation and don't really feel any effects yet. Save some
minor hot flashes, I haven't noticed anything major from the hormones (Unless
they are the cause of this rant..lol). Obviously, sexual function has taken a
hit. Something that is unavoidable for the time being. I certainly hope that it returns in some form down the road, and am thankful for an understanding wife in the interim - but
being treated like a patient sucks. Just because I have cancer doesn't mean
that I will break. I wish that I didn't have to start out every interaction
with friends by reassuring them that I am fine, crack some corny hormone
manopause jokes or other "stupid patient tricks" until they are satisfied
enough to congratulate me for my good attitude because "that is the key to
beating it". I now know how my dog feels when I give him a treat for not
pissing on the carpet. I can't even cough, groan, or wrinkle an eyebrow without
someone asking if I am ok.
I realize that it is because everyone is genuinely concerned for me, and
probably more scared than I am about what might lie ahead. I know how hard that
this would be without all of their love and support - which I appreciate more
than anyone will know, but dammit - I am still the same guy I was before all
this started. I don't intend on being defined by this thing. - Don't be afraid
to slap me on the back or ask me to help cut a tree or work on an engine or
something. I won't break. I promise.
03/22/16
Tuesday is talk to the Doc day. I began to ask him some
pointed questions about where this is all going. Things that I thought I had
clearly resolved. He picked up on my general train of thought and reassured me
that a successful outcome was still within reason. It will take some time (at
least six months after my final Lupron shot wears off – so that my natural
testosterone can start to return). Looking back, I had let myself get further
down a rabbit hole than I realized between reading forums and trying to become
an instant authority. I still have some hesitancy about expecting a “cure”. I’m
not even really sure how to define it at this point. I am a year out from any
usable info. Either way, I think I feel
good.
03/29/16
The IMRT linear accelerator was broke today, and it caused me
to wait extra time in the waiting area. I met a man that was there for
radiation of a Chemo –resistant tumor. He was on oxygen to help him breath
because the tumor was pressing on his airway. We joked about things and talked
a little. Think about that for a minute and let it sink in. We joked. This man
and I. Total strangers. This man who is on oxygen because a cancer is pinching
off his esophagus. Joking. Laughing.
Talk about the indomitable human spirit, exemplified.
My treatment wound up being cancelled for the day. No
biggie. Just moves my final treatment to April 18th. Talked to Dr. B
about rescheduling my next Lupron shot until after my Canada trip instead of
the week before. I don’t want to take a chance on a site reaction. He did not
see an issue, but I need to take it up with Dr. McLaughlin.
03/30/16
I think that I am on several prayer lists. That is what I am
told anyway. I sincerely appreciate it, but things are not that way. I wish
that I knew how to convey to others how it really is. I see everyone all
wrapped up in the current political scene – or stressed to the max over
complete bullshit. I see their faces in the checkout lines or as they pass me
on the interstate with haggard looks, already dreading their day. I still go to
work, and I still have concerns and chores, but I have a now unique perspective
of all of it. I no longer fly into a fit of rage if someone cuts me off in
traffic. I got a call from my GP dr.s office. Seems the nurse ordered the wrong
test on my recent bloodwork, and I needed to do a retake. The lady was so
hesitant and apologetic – I guess she thought I was going to reach through the
phone and rip her head off. When I was
like umm, stuff happens, no biggie..she went completely silent for a moment. I
really feel sorry for a lot of people. I wish I could come up with a way to
reveal the secrets to them that my adventure has revealed to me. But I know
that the chances of them taking my words to heart are almost nonexistent. So
tell me, who has the real cancer?
Bob did not show today. He was one of the first other
patients that I met. I thought today was to be his last day, but maybe he slid
out a day early. I really enjoyed his conversations. I need to follow up and
keep in touch. I guess I am now the “senior guy” on the first morning round.
Rob is there as well. A very nice man that brings his wife. Every morning she
asks me how far I drive in from. She has the beginnings of Alzheimers from what
Rob says. Sad. Sad for him – trying to care for himself and her as well. But
they are an inspiration to watch. Genuine love. I believe that he sad that he
was around 80.
03/31/16
I think today is the first day that I can honestly say that
I am tired. Maybe it is because of the compounding of the treatments, or not
eating as much due to my now finicky digestive system, or maybe both. Maybe
just the week catching up. Long rehearsals on Monday and Tuesday. I had a great
run last night. Probably one of my better 1 mile times. I am also about to
finally get under 200lbs – a goal that has evaded me so far. I have a 5k this
weekend. I have been using 5k events throughout this process as sort of a gauge
to ensure that I am at least maintaining and countering the effects of surgery,
radiation, and hormone therapy. By all accounts of what I have read, I should
be exhausted and miserable by this point of the combined therapies, but it
really hasn’t been the case thus far. I do have isolated symptoms – hot
flashes, some diarrhea when I eat an illegal food (fried pickle chips as an
appetizer is a bad idea at this point), and by the end of the evening, I go
from ready and able to exhausted pretty quick – like a switch. But nothing that
isn’t completely manageable. I am able to do full days at work and keep up with
rehearsal commitments and squeeze in some exercise. I am not quite sure why I have avoided the
bulk of the side effects, but I have to think that keeping active has played a
big role in it. I have always tried to be somewhat active – I am by no means an
athlete, nor am I competitive, and obviously carry extra weight. But I am
confident that my level of activity has helped me through a lot throughout this
adventure. Thinking ahead, when the IMRT is done, I should double down on my
exercise to regain as much as possible in case there is more to come.
The exercise component is another thing that I wish that I could convey to
others. The importance of being in good enough shape to that when your event
happens, your body is strong enough to deal with it. You don’t need to be a
competitive athlete, but some basic fitness is of utmost importance. I am far
from a health nut (I love beer too much for that).
04/04/16
Today starts the seventh week of therapy. I had a 5k on
Saturday. I kicked ass on the first mile, then pretty much blew up. Had a hard
time managing my heart rate. I was sorta tired the rest of the day. Sunday was
much better overall. Today was the first day of the earlier time, and met a new
guy. It is sort of odd being the short timer. The newer patients are asking questions
and sort of gauging my behavior and actions. I don’t mind at all. When they ask
how I am doing, they are really wondering what lies ahead for them. I was the
same. It is just a natural progression. Hopefully I can provide some
encouragement. It is really no different for me. I would be lying if I said
that I was not wondering what lies ahead for me after this.
04/05/16
Last night’s KOS rehearsal was lackluster at best. I had
absolutely zero chops..not sure why. I felt ok. Got home and went for a slow
and steady jog. Today was doctor Tuesday. I saw a guy that I had not yet met.
He was just going through the motions. I am on the fast track at this point.
The general feeling is that if something was going to complicate things, it
would have done so by now. I did see my friend Bob’s car as I was leaving. Glad
to see that he has made it back to finish up. He had a really rough patch for a
while. Left him a note. Hopefully I will get to see him tomorrow.
04/08/16
Camaraderie
uk /ˌkæm.əˈrɑː.dər.i/
us /ˌkæm.əˈrɑː.dɚ.i/
› a feeling of friendliness towards
people that you work or share an experience with.
There are very few times in my life
that I have experienced real true camaraderie. It occurred in the Navy, though
I was mostly too young and naïve to really appreciate it at the time. Then
there was the several years as a volunteer firefighter/EMT. Nothing like coming
back from a bad scene to bring people together. Since then I have had a few
very close friends to confide in throughout the years, but true camaraderie seems to be
hard to come by these days.
Then I began my radiation treatments. Never in my life have I experienced
anything like this. From almost day one (ok, maybe the second day) the others
in the waiting area and I began to converse about what brought us together.
Some were in my similar predicament, some much worse – but bonds and a sense of
“we are all in this together” formed immediately. Within a very short time we
were sharing some often deep concerns and issues, family life, hopes for the
future, the possibility of a less than successful outcome, and more – and how
to best play pranks on the therapists. All sorts of jokes and fun mixed in with
the silent acknowledgement that we are all a little scared as well. I have
already seen a couple finish and leave, and helped welcome in the new.
This camaraderie is not limited to just the patients. The therapists and staff
pour their heart and soul into this thing. They go far beyond just doing a job
and voluntarily become stakeholders in this thing. At the end of my first week, there was a 5k
event held for lung cancer that Saturday. I saw the fliers in the waiting room
and decided to participate. When I got to the race, several of the staff were
there to run it as well, and all recognized me as a patient. Mind blown. They
deal with this 12 hours a day all week and still choose to come in on the
weekend. I wish that I could find a way to tell them how much that singular event
meant to me. As I type this from my desk at work, there is a bake sale fund
raiser going on there and a raffle for the American Cancer Society Relay for
life. It wasn’t set up when I was there at 715 this morning, so I will go back
during my lunch break to help support them to support me.
A funny thing happened today. Four
of us were back in staging and the 7am guy went in first. Half way through his
treatment, the accelerator shut down – apparently because a construction crew
outside inadvertently shut down the cooling water. They immediately started
solving the issue, but had to completely restart the accelerator, which takes
several minutes – to rerun diagnostics and such. Meanwhile the rest of us – all
prostate patients with full bladders, are waiting with extreme urgency. When
the first guy finally got done and was coming out of the room, we all gave him
a standing ovation and accused him of having smoke coming out of his backside.
The whole place busted out laughing. Yea, we are all in this thing together.
As I get ready to begin my final
week of treatments, I am beginning to realize that the shared part of this
journey is about to come to an end for me. It would be nice to think that some
of us would keep in touch, but it really isn’t going to happen, and I know
this. We all will go back our separate ways and continue with our lives – and
that is probably as it should be.
As much as I would choose to have
never been diagnosed with cancer, I can’t help but think that my life would
have been less complete without having had gone through this. As far as I am
concerned, even with the side effects (which have started kicking in over the
past few days), this has been a positive thing that I feel fortunate to have
experienced. How messed up is that??!! I
am even more glad that, unlike many years ago in the Navy, this time I am aware
of the value of true camaraderie while it is taking place.
04/12/15
Four to go. The past few days have been sort of dragging for
me, but I feel much better today. Not sure why. Maybe it is the anticipation of
being done. My run last Saturday was decent, but I am losing time. 35 minutes
seems to be the norm for now. I did enjoy talking about everything with
Michelle over the weekend. I am finally at a point where I can openly discuss
my concerns and not feel like I need to put up a front. It is a lot easier
sometimes to talk to strangers or on line than it is face to face, but she
deserves to be included in my thoughts. Much more than I have. She is dealing with the uncertainty just as I am. I am looking
forward to her coming with me to the final treatment appointment.
Today was doctor Tuesday.
I met with Dr. Hayes, the medical
director. She seemed pleasant, and mentioned that when I meet with Dr. B on
next Monday, we will discuss the plan for management going forward. There is
that word again. Management.
I got to see Bob again today. He looks much better. We had a long conversation.
I have enjoyed our talks through all of this. I actually think that I will make
an effort to keep in touch with him. We share the same outlook about this. We
both realize that it is something that we are going to have to live with for
the rest of our lives, but we are going to go on living and enjoying our lives
and not dwell on it. It is just a thang.
I registered for another 5k this coming weekend. The Hogtown Beer run. How
could I not? I need to finish this thing in style – and try not to come in
last..
Oh Yea, eating a clif bar last night was a bad idea. That is all I’ve got to
say about that.
04/15/16
Tax day. One more treatment to go. I am truly excited. I
seem to have a lot more energy this week – perhaps it is knowing that I am all
but done with this phase. After my treatment, I got to talk with Bob again. We
have really become good friends. His final treatment was today, but he chose to
not ring the bell. He still has some other issues going on, and does not want
to jinx it. I really hope we can keep in touch.
As a joke, I put SpongeBob square pants stickers over my
markers today. That was good for a laugh. It is hard to believe that this part
is over. I still believe that it was much more a positive experience than a bad
one. In fact, I am sure of it. Whether the radiation works or not. The takeaway
is learning how to deal with this thing long term. Understanding that it is a
journey of many days, weeks, and maybe years. Understanding that it is not a journey to
attempt alone, but to be experienced with my wife, family, friends, fellow diagnosed travelers,
caregivers, and even total strangers. In essence, it is the journey of life.
Life full of unknowns – once again. And all the anticipation, excitement, and
fear that unknown things can and do bring. It feels good to have unknowns
again.
