Just imagine being hit by a bus, then being asked to get up, shake it off, and run a marathon right afterward. Sounds unthinkable, right?
Well, that is exactly how I felt about meeting the colorectal surgeon whom my gastroenterologist pulled strings for me to see a mere 17 hours after I was diagnosed with rectal cancer.
I tossed and turned all night and cried alone in my empty house. My mind was in shock and disbelief with the news I had just received. I remember falling asleep for short 20–30 minute bursts and then waking up dazed and confused until I remembered what was happening.
Everything felt like it was out of control and moving way too fast. The thought of having to get myself ready and go to a doctor’s appointment in the morning felt like a monumental physical, emotional, and mental challenge, almost as big as climbing Mount Everest.
“I could just say that I’ve had a change of plans, or I could reschedule for a later time, or I could just not show up,” I thought to myself.
While lying in bed, I had calculated that I would need to wake up at 6:30 a.m. to arrive at the hospital by 8:00 a.m. (I was asked to arrive early to fill out paperwork).
So when the clock struck 6:30, I surprisingly decided to get up and go. I figured it would be beneficial to talk to an expert and learn more about what I was facing. I would just use this time to gather information, and hopefully, nobody would be taking any knives or IVs out just yet.
I was beyond exhausted from not sleeping a wink and crying, but I managed to drive myself to the hospital on time. Of course, I was sobbing the entire 40-minute drive.
It was Dec. 15, 2017, and absolutely freezing in the New Jersey suburbs where the hospital was located. The dark and frigid atmosphere matched exactly how I felt inside. Cold, dark, and bleak.
I wandered through sterile hospital hallways and finally found the office. I walked in, and with tears in my eyes, told them my name and that I was here to see Dr. X. I felt like I was in the twilight zone and couldn’t exactly process the words coming out of my mouth.
Of course, I had to fill out the usual paperwork. My hands were shaking and I couldn’t see very well because I was crying. I thought to myself, “Who can concentrate on filling out their entire medical history and listing all of the medications they are on at a time like this?” I did the best I could and sat back down. I was called and taken into an exam room a few moments later.
A nurse came in to take my temperature and vitals (something you will get very used to if you have a serious illness), and then the surgeon stepped in.
“Hi, my name is Dr. X, how are you doing today?” he said in a chipper voice. With my sarcastic self still alive and kicking somewhere deep down inside, I replied, “Um, I’ve been better, thanks.”
We discussed how this all started, the conclusion from the colonoscopy I had the day before, and then he asked me to get undressed from the waist down for a rectal exam. I was not prepared for that, but hey, what the heck. This is another thing that a rectal cancer patient needs to get very used to.
He examined me manually with his finger first (ouch), and then with a scope (double ouch). He was trying to find the location of the tumor and how much space I had left for him to connect the colon back together again. You see, if the tumor is very low in the rectum, you may be faced with a permanent colostomy. If it is high enough, and they have enough room to reconnect everything after removing the tumor, you will likely only need a temporary ileostomy while your rectum heals after surgery.
He even asked me to look up and see the tumor on the big monitor in front of us. That was my first glimpse of the beast. There it was, the thing that could potentially kill me.
After the exam, he called me into his office to discuss what he saw and his thoughts of next steps.
Being an auditor by profession, I immediately informed him that I’d be taking notes during our talk and I’d appreciate if he could draw or write out what he was explaining to me so I could have a record of it. He did.
The main question I had for him and wanted answered as soon as possible was if he could tell what stage I was in.
He was actually very helpful and carefully explained to me (with drawings, too) how the staging of rectal cancer works. It is made up of two factors: overall cancer presence in the body outside of the tumor location, and cancer presence locally within the rectum/lymph nodes.
Through some heavenly miracle, I was able to keep focused on our discussion and I comprehended what he was saying.
However, the news I received was not great. He said he’d put me between stage 3 and 4 with the information he had right now. This was so much worse than I thought. But on a positive note, he thought my tumor was high up enough that I may not need a permanent colostomy.
He then explained that the protocol to treat this was: chemotherapy and radiation, a break, more chemotherapy, then surgery many weeks later. Well, it turns out this is only one protocol to treat rectal cancer, which I didn’t take, so more on that in a future article.
He also boasted about some recent patients who didn’t need any surgery because the chemotherapy and radiation had apparently made the tumor disappear. While interesting, this didn’t make me feel any better.
You see, I am generally not a fan of conventional medicine, and I very much embrace holistic approaches to health. With all this chemo talk going on, my alpha female personality kicked in, and I quickly informed him that I didn’t want chemotherapy, and that I was hesitant to go this route.
As if we were playing tennis, his alpha male side kicked in. He didn’t let me finish my thoughts and suggested I meet with his oncology partner at the hospital. He just raved about how wonderful Dr. S was and that she could put me at ease. Since I was completely exhausted and didn’t want to fight, I gave in and agreed to talk to the oncologist. He said he would contact her for an appointment as soon as possible.
He then wrote a prescription for me to get a rectal MRI with and without contrast as soon as possible. This would help him see in better detail how much the tumor had infiltrated the surrounding area and lymph nodes, and would give him a more accurate estimate of what stage I was in. He also wrote another prescription for a CT scan with contrast and mentioned something about insurance. I didn’t fully hear or care what he was saying at this point, and I took the prescriptions and put them in my purse.
My mind was only thinking about the fact that I had stage 3 or 4 cancer at this point. I was starting to fall apart inside.
As I was walking out of the door, I started to cry. It was all getting to be too much for me. He put his hand on my shoulder and said, “Hang in there.” I thought to myself, “Easy for you to say.”
As I write this article and reflect back on that day, I am extremely proud of myself for keeping the appointment and keeping my wits about me during this whole meeting so soon after diagnosis. It was actually very brave, although it didn’t feel that way at the time.
Was it difficult? Yes. Would I do it again? Yes, but I think I would have waited a day or two to have this visit. I felt this was all too rushed and I was too overwhelmed.
While getting the ball rolling quickly with doctors is very important with a fast-growing cancer in your body, the truth is, you are not going to die in a few days.
Part of what makes a cancer diagnosis such a crazy rollercoaster ride is the speed at which these doctors want you to act. They almost seem to use fear and prey upon your vulnerability to make you feel that unless you act within the next 48 hours, you will be dead.
Of course, this is usually not the case.
My advice is to give yourself a day or two (or three) to breathe, research, regroup and think about what you want out of your treatment and what kind of medical team and care is most important to you. In the coming articles, I will share what was most important for me.
Come back for my next installment next week when I describe what my first week after diagnosis was like, and how I shared the news with my family and friends.
Until then ... breathe deep, be kind, and take it one day at a time.
