Cancer is one of the most common diseases of our age, and yet those who face it rarely know what’s about to happen to them beyond the broadest terms. “Cancer up Close” is an open recount of Michele Goncalves’s cancer journey from pre-diagnosis to life after treatment.
As I was being wheeled into the operating room on the day of my surgery, I was clear that when I would wake, I’d have an ileostomy (and accompanying bag) installed, pain in my abdomen, and a few small, round scars along my waistline from the laparoscopic instruments. Yet, no matter how informed I was intellectually, I underestimated how difficult my recovery was going to be physically.
The first foggy memory I had after waking was of my doctor hovering over my bed in the recovery area asking how I was doing. I was still delirious, but I vaguely recall saying “OK.” Soon afterward, I was whisked away to my own private room, where I saw my family and spent my first day in bed not moving much at all.
From my second day on, the discomfort increased sharply due to the pain blockers from surgery wearing off and a huge incision I had from my navel to just above my groin. This made it hard to lay down or get in and out of bed. As a result, I couldn’t sleep but napped here and there sitting upright in a chair. Unfortunately, painkillers like morphine and oxycodone made me nauseous, so my only moments of relief came with ibuprofen.
I was on a liquid diet for the first day and a half, but by dinner time of my second day, I was eating bites of solid food despite feeling no hunger. This may not sound like a big deal, but it is if your intestines have been rearranged into an ileostomy. As the food moved through my digestive system, so did the pain.
My first bites also brought on another reaction: my first encounter with my ileostomy bag. Shortly after eating, it filled up with green liquid and air, and I had the displeasure of watching my nurse empty it out for the first time into the toilet. I was so grossed out and thought to myself, “How am I going to live with this horrible thing for six months?” I was truly overwhelmed. I didn’t recognize my body at all.
The next day, I was given a full ileostomy “management” lesson by an ostomy nurse and took photos of all the different supplies and steps. It felt like so much to learn, yet after a day or two, I started to get the hang of it.
A big part of my recovery process was movement. The physical therapists had me up and walking the morning of my second day, and it only increased from there. By my third day, I was climbing stairs. They emphasized the importance of moving several times a day to get the intestines to work and adjust. It was exhausting and painful, but I seemed to do well.
Originally, my surgeon thought I could go home by my fourth day, but I developed chills and a 102-degree fever on day three, so they kept me longer for observation. This was a good move because my white blood cell count shot up significantly overnight, and a CT scan revealed I had a huge infectious abscess near my surgical site. The fun just never stopped.
As a result, I had to get a drain installed through my buttocks into my abdomen to help my body remove the fluids from the infected area. I was knocked out for that procedure, but when I woke, I had a two-foot flexible straw-like tube with a plastic grenade at the end hanging out of my body and clipped to my gown with a pin. I was on the edge of having a mental breakdown, but thankfully my sense of humor took over and I named my new tail Dracula, and the grenade Igor. The nurses got a kick out of it.
As if this were not enough, I had to also get a PICC line put in (small catheter IV line that goes through your arm vein) since I needed to administer antibiotics for 14 days at home to kill my infection. How many more tubes and bags was I going to get? At this point, I just threw my arms up in surrender and tried to tell myself to hang in there.
At last, I was released from the hospital on June 6. The clothes I brought with me to change into didn’t fit because I had all of these bags and drains hanging out of my body. I felt like a circus freak and ended up wearing one of my mother’s baggy dresses.
The final challenge was the two-hour journey home. I somehow shimmied myself into the back seat of my brother’s car and laid there with my bum in the air (due to the plastic drain) and pillows surrounding me. It was quite a sight, but I was so glad to leave the hospital and finally go home, I would have done anything to make it happen.
Join me next time when I will share how my first month of recovery at home went, including giving myself IV antibiotics, and my shocking 20-pound weight loss.
Until then, breathe deep, be kind, and take it one day at a time.
Michele Goncalves is a financial compliance and fraud auditor for a Fortune 500 company by day and a passionate pursuer of holistic and functional medicine knowledge by night. She is also the author of the column The Consummate Traveler.