Butterflies In My Stomach

I never really paid that much attention to news coming out of the American Cancer Society, but today I did. New guidelines recommend that U.S. adults start colon cancer screening earlier, at age 45, instead of 50. I agree wholeheartedly. I’m a fairly private person, not one to broadly share deeply personal experiences, but feel need to speak out and share. Here’s why:

I am the healthiest person I know — the one in a million who exercises every day, eats from the local farmer’s market, wakes up every day feeling energized and rarely gets a cold. That’s why, just a month ago, when I went for my first, routine colonoscopy, I assumed it was just a one-day pain in the butt, literally. Coming out of the post-procedure fog of the propofol, however, I remember the doctor saying words like “cancerous polyp,” “CT scan,” and “when you talk to the surgeon.” In an instant, the healthy bubble I lived in popped — or more like exploded.

While I have experienced many things and am a calm, competent professional, none of that prepared me for the health scare-induced whirlwind of the past few weeks, where I’ve spent more time in hospitals and doctors’ offices than at a full-time job. Someone likened it to opening the hood of a vintage car (thanks, I’m not that old)— you identify something that is causing it not to run right but, in the process, discover other parts that need fixing. So it went with me.

There was, indeed, an asymptomatic but large cancerous polyp. It was removed. Relief. The only way to know how far it reached was to do blood work (which came back clear) and a CT scan, which did not indicate spreading, but did show a nodule in my left lung. Mild panic. A second CT scan with a focus on the lung showed a nodule in my left breast. Hard to breathe. The diagnostic mammogram indicated benign calcium in my breast, but thought the nodule may be in my liver. Going to puke. After two nerve-wracking, nail-biting weeks of testing, the nodules were determined to be clear. Lost eight pounds. In the meantime, my husband and I were simultaneously talking to surgeons about the recommended course of treatment for the polyp site, which turned out to be major, abdominal surgery. What??? Whose life is this???

That surgery, a colectomy, where about 10 inches of my sigmoid colon and associated lymph nodes were removed, took place one week ago. I went from doing yoga in the pre-operative holding area to temporarily being unable to eat, pee move on my own post-operatively. Fortunately, I had a fantastic surgical team, led by Dr. Kenneth Lee, at UPMC’s Presbyterian Hospital in Pittsburgh, who was committed to medical excellence as well as to getting me home for my daughter’s recital. I can’t say enough about professional and compassionate and terrific nursing care on the 10th floor of Montifiore hospitals. Equally important, my husband was by my side every step of the way and my mom, kids, sister and friends rallied around me. I was discharged four days after the surgery, in time to see my daughter’s dance recital. I sit here today, one week post-op, sharing my experiences with you. God is good.

I learned a few lessons along the way that I thought would be of interest.

1. Get a second, medical opinion and compare. Prepare to ask tough questions and find the best doctor for you. The doctor’s staff and office make a huge difference. You can only know which doctors, staff and hospital system is right for you if you have something to compare it to. I asked and my surgeon gave me his cell phone number. The office staff got back to me fast. That access and urgency was important to me. Know what’s important to you and compare, don’t settle.
2. Be aware of opioids and ask about options. Opioids and narcotics are routinely used during and after surgery. Given the opioid epidemic in this country, I wanted to stay away from anything that could be addictive. I talked extensively with anesthesiology professionals and learned my options. I chose to be part of an accelerated recovery program that reduced use of opioids and narcotics. In the week since my surgery, I’ve used only Tylenol and Advil for pain management. Ask and know your options about anesthesiology and pain management.
3. Inconvenient kindness is healing. A dear girl friend drove four hours each way to visit me for an hour and to deliver groceries to my house. A friend who is a priest, and happens to help run St. Vincent College, made a special trip, out of his way and unasked, to administer anointing of the sick to me in the hospital. My husband, mom and sister were at the hospital with me to check in at 5 a.m. and stayed, and stayed an stayed. All of these people had other things to do and it was not convenient to do what they did. That inconvenient kindness touched my heart and soul and accelerated my healing. I need to do more of it for others.
4. Nutrition and sleep are critical to recovery, but hard to come by in a hospital. My post-op clear liquid diet consisted of basically sugar water — besides Ensure clear and bouillon broth, I was given Snack Pack jello, sherbet, lemonade, grape juice, apple juice and cranberry juice. Tip 1: I made my own soup and brought it with me. There has to be a better and more scientific nutritional approach to post-operative recovery. With the unusually loud beeps of the hallway heart monitor screens, it was impossible for me to sleep. I slept about 12, non-consecutive hours in three nights. There has to be a way to create a more restful recovery environment. Tip 2: The last night I got smart and asked for melatonin, which did help.
5. Ask and look for signs. I made a deal with God — show me butterflies as my guides and I will follow. Guess what, butterflies showed up. In the examination room of the OB/GYN’s office where I was for my post-CT breast exam, there was a random picture of a butterfly taped to the wall. When I had my first surgical appointment, an OR nurse was in the coffee line with me and she had butterflies on her surgical cap. Unbelievably, there were many others. Those signs lit my path and helped guide decisions.

Now I’m working on recovery — walking, but no yoga or golf in the short-term; getting back to work (I was able to send out a proposal and do a new business call from the hospital!); and enjoying time with my loving family who is taking good care of me. I await final pathology results, but know in my heart that everything will be OK.

If you are 45, go get that colonoscopy, even if you are the healthiest person you know.