February 15th, 2017 was my last maintenance chemo.
I was officially in remission and NED (No Evidence of Disease). A brief note
about being “NED”; there is no cure for Stage IV colon cancer, it’s considered
treatable, not curable, and is treated like a chronic disease. Even though
there is “no evidence of disease”, since the cancer spread from my colon to
another organ (my liver) there would always be cancer cells in my blood that
will eventually land somewhere and start growing again. So while there is no “evidence” of disease, there
are still cancer cells floating around my body. Once again I’m lucky in an
unlucky situation as it’s rare to get to be NED, and rarer still to stay there.
At that time my CEA was 1.2, my scans were clean and my oncologist gave me the
best news since my diagnosis- I was getting a break from chemo! This was my
first break from treatment since I started chemo back on April 21, 2014. From
now on I would have blood drawn to check my CEA and my port flushed every six
weeks, with scans to get an updated look every three months. As long as my CEA
stayed below 2.5 and nothing new showed up on the scans, I would continue to
not need chemo. I had been in remission before, but my numbers started rising while
doing maintenance chemo and I never got to have a break. Obviously I was
looking forward to this! I was hoping to
have surgery for an incisional hernia I had developed in my stomach where I had
my colon resection and then start exercising and get back into some semblance
of (better) shape.
About a week into my break I started having pressure and severe pain in my chest. When I called and asked, my oncologist assured me that this was not a side effect from the chemo, and said I should check it out with a regular Dr. I have Gastroesophageal reflux disease (GERD) from before I had colon cancer (ah the good old days when migraines, GERD, and flat feet were my biggest medical worries!), and the pain and pressure felt similar to those I had when I was first diagnosed with GERD so I made an appointment with my GI Dr. He said this wasn’t anything associate with the GERD and I should go see a cardiologist. So off I went to see a cardiologist. The cardiologist immediately sent me to get a CAT scan of my heart to make sure I was in no danger of having a heart attack. The results came back negative, and he told me the chance of me having a heart attack was 1 in a million. I was very happy to hear that because the pain was so intense at times I thought I *was* having a heart attack. During this time, there were nights where I slept on the couch because I was afraid I would have a heart attack in my sleep and I didn’t want my wife to wake up next to a dead me. After a more complete exam the cardiologist told me I had an acute case of pericarditis; inflammation of the pericardium and build up of fluid around the heart. He put me on 2 types of medication and told me he wanted to schedule an echocardiogram to be thorough, and make sure there wasn’t anything else wrong. A week later I was back at his office, getting an echocardiogram by the Dr.’s assistant.
That evening at about 11:30,
as I was driving home from a bi-weekly Dungeons & Dragons game I play in, I
got a phone call. I didn’t recognize the number so I wasn’t going to answer it,
but then I thought, “It’s late, I wonder who that is…” so I picked up. It was
the cardiologist. Instantly I knew something was wrong- no Dr. calls you at
that time of night with good news. He asked me if I was able to go to the ER
immediately- and not just any ER, but a specific hospital that has a special
cardiac unit. I asked him why, and he told me something looked suspicious on
the echocardiogram. He said there was a chance my aorta was leaking, and that
was causing the pericarditis. If that were the case I would have to have open
chest surgery so they could close the leak- sew up my aorta. He wanted me to
get another CAT scan of my heart- this one to specifically look at my aorta and
see if it was actually leaking. If it were I’d be admitted to the hospital
right then and there and be scheduled for surgery. I asked him what the chances
were that my aorta was leaking, and he said 5%. This got my heart racing since
he told me the week before that my chances of having a heart attack were 1 in a
million. 1 in 20 does not feel as safe as 1 in a million! To my own surprise I didn’t really panic. I
guess after a couple of years of dealing with colon cancer and the fun times it
provided on a daily basis, this was just one more thing. I got home, said hello
to my wife, and then told her we have to go the ER. I told her why, and that’s
when I had a 42 second breakdown. I cried, and cursed, and then we left for the
hospital. My wife was (and continues to be) a rock.
We got to the hospital, and
checked into the ER. Luckily we didn’t have to wait long for the scan, which was
quicker than the scans I usually had. This makes sense since they were only looking
at my heart this time, not my pelvis, abdomen and chest. The results of the
scan showed that my aorta was fine, and I was told I could go home and relax. So
we went home, and I was able to relax- with the help of Xanax.
I stayed on the pericarditis
medications for another 5 weeks, and it slowly got better. I had to stay on the
medication even after symptoms were gone because of the risk of it recurring. By
the end of April I was finished with the drugs, and then it was time for me to
get my incisional hernia repaired. I had developed it around September 2016, right
above my belly button. It’s a strange thing to see your intestine bulging
through your abdomen, and when you push it back inside it makes a gurgling
sound and creates a strange sensation that is difficult to describe. So in the
beginning of May I had my hernia repaired. The surgery was successfully done
lapriscopically and the recovery was more painful than I thought it would be. The
week following the surgery it was time to get my CEA checked. It had gone up
the last 2 times, from .7 to 1.2. to 3. When they checked it this time it was
up to 8.2. The oncologist ordered a scan and wanted me to start full chemo
again the next week. When I told him I had surgery the week before, he begrudgingly
put off the treatment for an extra week. The chemo I was going back on lowers
your platelet count, weakens your immune system, and causes you to heal slower,
so you need 2 weeks off after surgery. When the scan results came back I had 2
new lesions in lymph nodes that were behind my stomach. Another recurrence.
Seems I couldn’t really get a break after all…
