Lights! Camera! Tumor?

[This post was authored on July 28, but draws from texts, emails, and other sources in an attempt to best capture what I felt on July 15.]

It’s colonoscopy day.

I’ve been fasting for a day and last night had to do the first bowel prep. I’m told the one I’m using, Suprep, is the “good” one since it’s lower volume than the others. Whatever. It doesn’t taste that great – fortunately I only have to to drink 16 oz of it then another 32 oz of water in the next hour.

This morning I was awake at 6 to do the second prep. Had I known I’d have to do the second prep at such an ungodly hour I would’ve scheduled the procedure for the afternoon. And ack. Knowing what it’s going to taste like doesn’t help. Actually it was salty and tasted a bit like li hing mui. [edit: the nurses in San Carlos said there are multiple flavors and perhaps I should try lime next time.] The first bowel movement was a little bloody. Odd. Oh well I’ve had hemorrhoids in the past and it only first BM had a bit of blood.

Uber’d to the Palo Alto Medical Foundation. After a short wait they took me back and started getting me ready. I can’t remember how many times they asked for my name and birth date. I wonder what would’ve happened if I said I was Jean Luc Picard, born on July 23, 2305? Actually everyone was quite pleasant and I’m sure they would’ve rolled their eyes and said, “Don’t worry we’ll have your head reattached right away.” All went well until the heart monitor’s battery died – with my arm in its cold grip. Apparently this is a frequent occurrence. The battery going dead that is – not necessarily while squeezing the life out of a patient’s arm. [edit: even the nurses at other PAMF facilities know of this monitor. It’s infamous!] After it was plugged into a wall outlet it released my arm and we got on with things.

The anesthesiologist, who turned out the be the primary individual getting me prepped, said I’d be under “twilight anesthesia.” Apparently I’d be somewhat aware of what was going on, but ultimately the level of sedation was up to me and as the procedure went on they’d adjust the level to my reaction. I could also tell them I wanted more. I just told her that I want to be “out” during the procedure. She just smiled and said there are some people who prefer to be fully awake. Crazy people I’m sure. But sure enough I overheard another person being brought in for prep telling the nurse she didn’t want any anesthesia.

I was wheeled into the OR. This is the first time I’ve been in a bed and wheeled around, and I have to admit it reminded me of being on an amusement park roller coaster ride. That slow crawl just before the tracks take a plunge!

They got me to lay on my side, started the IV for twilight anesthesia, and…well I don’t remember very much after that. The next thing I knew I was in the recovery room.

Somewhere along the way the hospital gown I’d donned in pre-op was magically replaced with my clothes. This is something I still find a bit puzzling. I wonder if whatever magic that donned my clothes could arrange for an upgraded wardrobe next time?

While I was in recovery the gastroenterologist came in and very gently delivered The News: she had seen a lesion that she suspected was a tumor. She was going to refer me to a nurse navigator who would help me coordinate with specialists to work with me further. And there was one surgeon in particular she wanted on my case. While I know I remember hearing everything she said, I didn’t feel very much. Not shock. Not sadness. It was just news delivered. Maybe it was because I wasn’t fully recovered from the twilight anesthesia.

I had left instructions for any post-op instructions to be given to my friend, JT, who was taking me home. From past experience I know that sometimes I’m recovered enough to remember them, and sometimes not. The nurse asked if I’d like JT to hear what the doctor had just said. I thought it over a bit and said I’d like to speak with JT first.

When JT came in I told her they’d found a suspected tumor during the colonoscopy, and would she like to hear what the doctor had already told me? She said yes. I’m sure JT was shocked but again I really can’t remember much. When the nurse returned we asked if the doctor could come back. This turned out to be a great thing, since JT asked questions which in hindsight I should have. I’m the type who processes things and asks questions later. This works well in many professional situations but isn’t quite the best in medical situations, where you’ve got the doctors there before you and with you on their mind. How big is the tumor? Is there margin to remove it? The gastroenterologist patiently and gently explained that she could only see things visually during the colonoscopy and that further tests would be needed to characterize the tumor. She’d taken a lot of biopsy samples and those would go to a lab for pathology ASAP. A CT scan would check for metastases and an ultrasound would image the tumor to determine its size and look for adjacent lymph node involvement. She would order these ASAP, along with the blood work required to clear the CT scan. She said that by visual inspection she thought the tumor was a carcinoma [edit: she said rectal adenocarcinoma, something that JT picked up on, but I didn’t remember – once again glad JT was there], but we would need to wait for a pathology report for a true determination.

After she answered our questions she once again said how sorry she was to deliver such news, but that I should expect a call from a nurse navigator soon. The nurse got me into a wheelchair and took me to JT’s car. (Even though I felt I could walk, it’s not allowed by hospital rules).

We grabbed some lunch. As you might imagine I was a bit hungry having been fasting for a good day and half but didn’t eat much. I still wasn’t feeling any impact of the news. I suspect JT was taking it a bit harder. She had lost her brother to an exotic form of cancer and so was I’m sure processing things very different from me.

When we got to my house JT gave me a hug and said to ask if I needed anything. I remember saying I didn’t want to impose on her any further – I was glad that she had picked me up and was willing to listen to what the doctor had to say. I didn’t feel I had any right to ask any more of her. Her response was simple and one I’ll always remember: “It’s no imposition.”

I don’t remember much of the afternoon. At some point another friend, who was aware I had had a colonoscopy since she was the backup to drive me home, texted to see how it went. I relayed the news. Yes, over text. The response was a not unpredictable “What? Omg” and a supportive discussion ensued.

Through the evening I shed a lot of tears. None of them were of fear or frustration. They were of gratitude that my closest friends could be so supportive. I had always thought if I had a major medical issue I’d be facing it alone – being single and with no local family. Yes I had friends, but I didn’t think any were so close that they’d step in and help in a medical crisis. I went to sleep for the first time knowing what it meant to be blessed.