I’m almost done with my first round of chemo, so I thought
it might be a good time to share some of the things that I have learned in the
last few weeks that might help those about to go through chemo and those with loved
ones going through it.
I will share with you the statement that every member of my
care team has said at one time or another.
To be honest, I have learned to hate this statement and every time
someone says it, I find myself making the same face that my sons make when I
repeatedly lecture them on something.
You know the face, the slight grimace that says “here we go again.”
Chemo is different for everyone.
Everyone responds differently—some people will take chemo and it will
never bother them. Some people take
chemo and it is like a train wreck. Most of us land somewhere in between.
Let’s talk a second about my care team. It is made up of my primary care physician,
my oncologist, the chemo nurses, my urologist, my endocrinologist, and a nurse
practitioner. At this point, my primary
is copied on all my lab results, appointments with the rest of the team,
basically, just kept in the loop so he can be aware of my health conditions
going forward. I cannot stress this
enough: find a primary care physician
that you trust and that you are comfortable with. The urologist was the doctor who confirmed
my primary’s diagnosis and performed the surgery. I was referred to the oncologist by my
urologist as they have an extensive working relationship. The oncologist is treating my cancer
itself. The endocrinologist was also a
referral by my urologist to monitor and treat any hormonal issues (and there
were some, we won’t talk about the mood swings or temperature issues—some things
are best left unsaid.) Who pointed me to the urologist? My primary care physician did. Good
doctors know other good doctors.
That’s important when you are trying to do something like fight a health
related issue. The chemo nurses are
angels in scrubs. They are the ones who
actually administer the chemotherapy.
They put up with a lot and are constantly moving throughout the
treatment room. There could be anywhere
between 5 and 15 patients at one time.
The nurse practitioner treats the side effects of the chemo and helps
navigate the chemo patient through the rounds of chemo while maintaining their overall
health.
A round of chemo; sounds very simple right? Nope.
I was shocked to learn what the phrase really meant. Was it a one and done type of thing? Was it a series? What is a round? I didn’t learn this until I talked with my
oncologist. For me, wait, can we say it together? Chemo is different for everyone, a round
is a three week cycle. I have two
rounds, so 6 weeks of chemo. A round can
be much longer than this depending on the flavor of cancer you may have. I met a lady in the treatment room who has
been having chemo every two weeks for two years. I cannot imagine.
I have a PICC line.
It was probably the one thing I was dreading the most to start with, but
it has really evolved into nothing more than a minor nuisance. The actual procedure was very simple, all I
did was lay there. It’s in my right
arm. I’ve got two tails hanging out of
my arm that IVs can be connected to. It’s
a bit of a bother when I try to sleep because, well, I’ve got two tails hanging
out of my arm. It is bandaged and padded
with gauze so it’s not that bad. My
lovely wife has to flush my lines out every 24 hours unless I’m getting
treatment and then the chemo nurses do it.
I’d do it myself, but it takes two hands and I’m not that flexible. All I've got to do is keep it clean and dry and not lift more than a gallon of milk with my right arm.
You may be asking yourself, what is chemo like? It’s sitting in a recliner with a couple of
lines running from the IV pole to your arm.
The treatment itself (and remember our saying) really isn’t a big
deal. The nurses start us with a bag of
fluids and then a bag of premeds. The premeds
help prepare your body to accept the chemo more easily. After all of this and a flush between each
bag, the chemo starts. This could take
anywhere from 30 minutes to 5 hours depending on the type of chemo you are
getting. One of my chemo drugs (I'm on three, the treatment is called BEP, you can Google it if you like) can impact the kidneys. so the fluids, which adds time to the treatment day. One patient in the treatment
room told me that they had one treatment last 12 hours. Oh, my word.
For me, the chemo fun really begins as the last bag empties and we are
sent home.
My side effects have varied.
Let me take a moment to remind you that chemotherapy drugs target those
cells that reproduce themselves rapidly.
As I understand it, scientists haven’t figure out a way to target only
those cells that are cancerous. So
instead of using a sniper’s precision to target the cancer, we use the shotgun
approach. There are several types of
fast reproducing cells in our body: red
blood cells, white blood cells, platelets, skin, hair, and probably some I’m
forgetting. So chemo attacks all of
these cells, basically killing them off, and thus the side effects.
I’ve really had two basic side effects--extreme
weakness/fatigue and nausea. I’ve never
experienced being tired like this before.
Let me put this in context. I’ve run
half marathons—13.1 miles, and not been this tired. I can feel perfectly fine, get up and walk
across the house, and need a nap. This
is in part because my blood cells are being attacked. Sure, they are being replaced but that takes
time. And I’ve learned that the effects
of chemo are accumulative. I tried to go back to work earlier this week,
because my doctor said “If you feel able, you can work.” At 7:00 Wednesday morning, I felt good. I’d slept okay; nausea was under control, so
I went to work. I sat at my desk at
7:30, by 8:30, I was tired. My 9:30 I
was fatigued. By 10:30 I was packing it
in. By 11:00, I was at home in bed. Side bar:
I had three coworkers, friends, really, tell me the same thing Wednesday
morning “You look terrible, are you okay?”
What they were really saying is “you don’t need to be here, go home.”
Fatigue can be sudden and stay a long while. My sleep patterns are all jumbled up. Pre-cancer, I’d be in bed by 10:00 PM, asleep
by 10:15 (seriously, ask my wife) and up and at it by 4:40 AM ready to face the
day. Now, I barely make it to 9:00 PM,
sleep for a couple of hours, wake up, use the restroom, walk around the house,
and go back to bed. Repeat this cycle a couple
of times until just about 4:00 AM and I am wide awake. Add a couple of naps during the day and you
have my new sleep cycle. Most of my
naptimes, I can’t sleep well, so it’s more of an organized rest period than a
nap per se.
Nausea is a beast all of its own. Some days, I have a great appetite and can
eat whatever I want. Some days, the idea
of a certain food makes me want to hurl.
On Tuesday of this week it was coffee.
I tried a cup of coffee and the results were quick and gross. Today, I'm enjoying my third cup as I write
this. Sometimes the nausea is such that
I can’t get out of bed without being dizzy and wanting to hug a toilet. When it is at its worse, the only thing that
I can stomach is a peanut butter milkshake. My nurse practitioner is most concerned with my nutrition so we are
working to control the nausea. I’ve got
to eat to regain strength, I need strength to handle the chemo, and to help my
body rebuild. Thankfully, there are some
great meds to handle nausea and they seem to be working for me.
Other side effects include hot flashes, chills, aches,
chemo induced acne (I’ve got more pimples than a 15 year old kid), ringing in
the ears, hair loss and many others. I’ve
noticed more hairs falling out than normal so I got a buzz cut yesterday. The side effects come and go and we are
dealing with them as they arise. My care
team is doing a great job making this as easy as it can be considering it is
chemo.
I want to take a few moments to talk about those side
effects of chemo that aren’t caused by the drugs themselves; we’ll call them
social side effects.
- · People don’t know what to say. I’ve seen it a thousand times. They want to ask how I’m doing, but they don’t know how to ask. May I suggest “How’s it going?” My least favorite so far has been “Well, you’re not bald yet.” To be perfectly honest with you, you don’t really want to know how I’m doing. You are trying to show you care. The “how’s it going” approach allows you to do this while allowing me to decide what I want to share with you. To be truthful, you may not be able to handle how I’m doing. If I answer “I’m okay,” that really means “I’m okay considering I’m on chemo.”
- · People avoid me. I’m a cancer patient, not a china doll. I don’t know how many phone calls my wife has gotten from folks checking on me because they didn't want to bother me. We appreciate the concern, we really do. Let me say this: I’m not going to break. You don’t have to avoid me. If I’m feeling poorly, I’ll tell you. If I want to be left alone, I’ll tell you. Sometimes, I just need to sit and talk to someone about normal things--the weather, sports, anything.
- · People are shocked by my candor. I’ve learned that if I am going to deal with cancer, chemo and the rest, I’ve got to keep it real. I have to be honest with myself which may cause me to be overly honest with you. So please don’t be shocked or offended by my honesty. Just roll with it.
So, how am I doing? I’m okay.
Oh, I just made myself laugh out loud.
I’m okay for somebody going through chemo. Fatigue and sleeplessness are my two big
issues right now. I’ve got one treatment
left in this round and I’ll be halfway done.
My nausea is under control for the most part (some mild flare ups,
mostly around smells). Yeah, I’m
okay. Not up to any races or much
activity at all, but I’m okay. As always, if you have any
questions, please let me know. I’ve had
several folks leave comments about these blog posts, so I hope they are
helping folks learn more about cancer and cancer patients. I have several goals for this trip I'm on. One of which is to help people learn about cancer and its treatment.
Till next time.
~ ~Tom
