My husband drove me in that early Monday morning. I would not be allowed any visitors because of the pandemic and I did not know what I would need. I had no idea what to pack the night before. So I packed clothes, a book, plug-in diffuser and essential oils that a wonderful neighbor had dropped off, a giant jug of alkaline water, 3 small boxes of bone broth, and a couple bottles of smart water. When I arrived with my rather heavy suitcase, it got the same wrist band as I did, and was stored safely in another area until I was in my hospital recovery room.
My surgeon came by at 6 am - he looked at the MRI with me one more time, I joked about how I couldn't help him out further now that I arrived and was prepped and ready, but I trusted he knew what to do with these MRI details and the surgery he was here for. I met the surgical resident and joked with him that he was not allowed coffee and breakfast in the OR and grilled him on exactly just what he was going to do while my surgeon was operating...? All joking aside, I thanked him as I had thanked my surgeon, knowing they were a team and would both be working closely together on my body. I met the anesthesiologist and the anesthesiology nurses, who wheeled me into the OR as I received a sedative before the general anesthesia started. I understood I was going through some prep for about 45 minutes before they would actually start the surgery itself. As I was wheeled in my pre-op bed towards the OR, it quickly became lights out for me after that.
I woke up at about 2 pm. My surgeon had already called my husband at home and told him that the surgery went well, but I had yet to stay awake for more than 5 minutes and would be out of it for a few more hours. The nursing team in recovery were wonderful and busy. They had made changes to the hospital to accommodate cancer patients with COVID-19, and three other floors had been cleared in preparation. As a result, I was in a combined gastrointestinal and sarcoma surgery recovery floor. I tried to walk as that was the goal for that day, and immediately felt seasick. I made it 8 steps to the armchair and sat, trying to breathe. All the laparoscopic sites were making me hold my breath, and the anesthesia remaining in my system didn't help my balance. Once I started breathing again and relaxed a bit, I stood up again and walked back to the bed.
That first night I had developed a migraine. A full on, head-banging migraine. My night nurse felt terrible too because she couldn't help - the orders for pain medication (Tylenol) and a muscle relaxer (Robaxicin) had already been dispensed. There was no other medicine order issued. I asked her to dive into my suitcase and haul out the diffuser and lavender essential oil. She did. Maybe that was a first for her - but she didn't seem fazed by all the alkaline water, bone broth, clothes etc. I put some lavender drops on the diffuser and she plugged it into a nearby wall outlet. Then she helped me to brush my teeth, to use a washcloth on my face, and to put some lavender essential oil on my forehead. I was able to sleep after that and when I woke up the migraine was gone. EVERYBODY who came into the room that next day commented on how nice the room smelled... I am sure the lavender was a tad overpowering, but I was migraine free and moving onto day two of recovery.
Breathing and Moving
Ostomy school, walking, advancing my diet and doing my incentive spirometry breathing exercises was set out for me on Tuesday, Wednesday and Thursday, in addition to all the regular check-ins by the awesome nursing staff. It was a busy day. The lavender was still going, and I turned on my TV to a music-only channel to change my hospital room to something a little more welcoming. My goal for the day was to walk and sit 5 times so I walked 5 times and I sat 5 times. Each walk was 2 laps around the nursing station, about 30 yards in total. I did my breathing exercises every hour, doing my best to make it a competition against my last number achieved on that thing. Coughing hurt but I had to do that too. My liquid diet was advanced to the next level and I ordered lemon jello and a popsicle I think. I only remember eating the jello. After not having any food since Saturday, that tasted great. I called my family and expressed my glee for jello.
My oncology surgeon came in about 4 am for an emerging issue elsewhere to check in and say hi. It was good to hear from him that my surgery was a success and they had clean margins. We had to wait for the surgical pathology report to be sure of lymph nodes and metastatic deposits to the mesentery or omentum or any other tissue to be examined. My current stage and TNM status was a Stage 1, T2N?M? until the surgical pathology report came back. T reports the tumor size, N reports the lymph nodes involved and M reports the number of metastatic sites. The ostomy and I were getting along fine, but I had not yet changed it yet. That was to be my final test Thursday, and if I could do that I would be discharged and ready to go home.
Discharge day! I wanted to shower and put on some real clothes before going home. Hospital gowns are great but they have their limits. It was time for some real clothes. They brought me towels and a bar of soap and off I went to my little bathroom. Everything went well until I dropped the soap. You see, with my 5 laparoscopic incisions and the one large incision over my lower belly, and all their resulting stitches, bending down was a tight challenge. I looked at that soap for a long minute. Then, like a giraffe bending to drink water, I managed to slowly get that soap, while hanging on to all the support bars.
My ostomy nurse came in after the shower and we started the last test of my ostomy training - changing the ostomy pouch and cleaning my ostomy. I would like to say it went well, but I was not ready to see my insides on the outside, even if just it was just a little. I am normally a pretty hardy person around needles, procedures, blood and body fluids. With this experience, I nearly passed out. Twice. With a lot of patience and expert help from the ostomy nurse, I got it done. Then the discharge nurse came and we got ready to send me home.
It felt good to be home, recovering with my family around. However I was feeling overwhelmed. I was slow, needed lots of breaks, and couldn't do much beyond a few minutes walking and a lot more sitting with the heating pad on my back. The weight of being diagnosed with cancer and everything I had been through in a month set in and it left me feeling exhausted. I was counting on that pathology report to bring good news and lift my spirits. I still had the image of it in my mind - the report stuck to the fridge with a magnet, with the words clear margins, negative lymph nodes, no invasion elsewhere, all of it positive news. That night I got the call. The report indicated 0/40 lymph nodes involved, no perineural or muscular or other tissue invasion, and no metastatic deposits in the local tissues that were removed. There was lymphovascular invasion, meaning this cancer had sent copies of itself migrating up the blood and lymphatic vessels from the primary tumor site. It was on the way to my lymph nodes. Yet the lymph nodes were removed and were deemed negative (N0) which means these cell copies had not made the entire journey, and I did not need chemotherapy or radiation therapy at this time. My current diagnosis was updated to Stage 1, T2N0M? rectal adenocarcinoma. The next two years of imaging and labs would define the last question mark of any distal spread or metastasis.
Next Goal: No Metastasis
I read and learn more about cancer every day. But I know my limits and I am still going to enlist the professional knowledge of my peers and colleagues to ensure I am not losing objectivity in this, for at least the next two years. After that, my work in helping my immune cells identify and eliminate bad/cancerous or precancerous cells in my circulation is key to prevention of metastasis and changing that M? to M0.
Today, I am grateful for my obsession with prevention and getting a colonoscopy done. It found a cancer early. It is possible that your screening may also find something early. Collectively with proactive screening, we can change the conversation about a cancer diagnosis to sound more about a cancer that was found early, rather than too late, by completing our preventative screenings. Please take the time and get a colonoscopy if you have any of the family history or warning signs associated with colorectal cancer, or if you just turned 45. It could save your life too.