Up at 3:30, out the door before 5, and at the hospital early for our 5:30am check-in, we were more than ready to be the first surgery of the day. As we waited for my name to be called by the nurses, I said all the cliché overly dramatic things to Hale but mainly we just stood there feeling ready. I desperately wanted the tumor out as I had started to envision it growing and spreading within me.
Everything went smoothly except for getting an IV line in and getting blood out for final tests, and soon I was on the table with the surgical team surrounding me as I was put under by the anaesthesiologist whom I had met (and inexplicably chosen to cry to) in the pre-op room. Next thing I knew, I was floating in and out of consciousness in post-op.
My surgeon appeared and told me everything went extremely well. She took the tumor out intact, took all the organs successfully, and very surprisingly didn’t find the widespread cancer she had anticipated. The immediate pathology that they do during surgery (frozen section) did confirm that it was cancer, but she felt very good about what else she saw in there.
This was hard to take in given the expectations and my loopiness. Later when I saw Hale, he confirmed all of this based on his more lucid conversation with her after the surgery. While feeling relieved, I was really too focused on the present to take in the big picture.
For hours I drifted in and out waking to pain in my belly and throat. The nurses gave me ice chips and drugs and the day wore on. It turned out that they were awaiting a room on the oncology floor to be vacated so I could move in. Sometime in the evening that option disappeared and I switched to waiting for another room on a general surg/med floor.
There was a scare when someone coughing with the flu was brought into the post-op ward, where we were all separated by only partially closed curtains. Then things quieted down as all patients left and soon it was almost only me. The nurses were very kind to me – getting me up for my first stand, sneaking Hale back in to sit with me, and switching me from a gurney to a hospital bed.
Around midnight they wheeled me to my room and we celebrated that I had scored a private one. Finally Hale could go home and I could get some rest.
Or so I thought. Inexplicably the night nurse decided that my catheter needed to be removed at 2am and subsequently reinserted when my bladder didn’t work on its own. Then she couldn’t get that put back in and had to call for help, all while I lay crying, feeling helpless, alone, and exhausted. An hour or so after finally falling asleep, the technician arrived to draw blood and an hour after that, the nurse with meds, soon followed by the nurse’s aide to take vitals and then at 7 the hall was alight with noise as nurses changed shifts. So much for sleep!
The next couple of days were a series of ups and downs.
Pain and discomfort. Happiness at being able to walk a little further each day, with my walker and Hale by my side. Sleepless nights. Eating solid food. Endless pokes, prods and blood draws. Delight at my first shower and no longer being greasy and malodorous. Uncooperative bodily functions and the various unpleasant medical compensations. Doctor and Nurse Practitioner visits to check on my progress which seemed to be improving. A swollen and painful hematoma along my mid-incision. Hale’s full day company every day and texts and flowers from family and friends.
Several absolutely outstanding nurses who showed me such care and helped me understand just how one nurse can completely change a patient experience. They far outweighed a couple of terrible substitute nurses who left me feeling unseen and afraid for the nights. Lovely nurses’ aides who, despite being overworked, looked after me with competence and compassion.
Then things started turning for the worse.
I was anaemic, natural right after surgery but which should have been getting better by now rather than worse. They discovered internal bleeding and another hematoma and took me off ibuprofen since that could cause the bleeding to worsen. And off the blood thinners necessary after surgery to prevent clots. I lay awake at night worrying that it would worsen and trying not to google what could happen.
And then came the sudden onset of nausea and vomiting after Hale had gone home one night. For the next 36 hours, I expelled up everything I had eaten for three days. Back in went the IV for fluids and anti-nausea meds. Back in went the catheter. Back on went the leg pumps to prevent clots since I was not moving on my own.
No more Tylenol since I couldn’t keep anything down. Extreme pain in the incision from the retching. (You are not even supposed to cough, sneeze or blow your nose after this surgery, let alone uncontrollable spasms. A nurse later told me I was lucky I hadn’t ripped open my ten inch wound like she had seen happen to others.) Waking up suddenly throwing up into the little green bag. Or worse, not making it into the bag and covering myself in vomit, with no hope of enough strength to shower – which would be impossible anyway with all the tubes attached to me. Extreme exhaustion to the point of being unable to keep my eyes open even when awake.
Calls in from my doctor and visits from the weekend attending doctors as they tried to figure it out. They determined I had a prolonged ileus, which is basically where the top part of your digestive tract is paralyzed so nothing makes its way down and eventually comes up instead. The prescription was “nothing by mouth” to let the intestine rest and begin working, then gradual reintroduction of ice chips, drinks, bland soft food in tiny portions. And definitely no hope of going home soon.
Great nurses got me through this. Despite all Portland hospital systems going into Crisis Standard of Care due to the tripledemic of RSV, Flu and Covid on my third day in hospital, my nurses took excellent care of me and treated me efficiently yet with kindness.
If you are a nursing professional, thank you. Please know that you are often the bright light in a dark night for your patients. We know how overworked and undervalued you are. We know you have lives outside the hospital and that you have both wisdom and stories to share with us. We appreciate you.
I began to get better. The anaemia improved. The ileus started to resolve. I could eat a few bites of food, and even better, digest it. (I didn’t, however, manage to eat any of the multiple plates of turkey with gravy, mash with gravy and extra gravy that they kept bringing to vegetarian me.) I slept. My strength started to return. The tubes came out. I showered. I was walking again, eventually working my way up to 10,000 steps in a day around the same hospital corridors.
And then, very quickly, I was hitting all the milestones they wanted and was nearly ready to be released.
But first, my one week post-op consultation with my oncologist to go over my pathology and next steps. This had been scheduled for her office, but since I was still in the hospital, she came to my bedside instead and combined it with a physical check.
She told us that we were extremely lucky. Not only had she not seen anything scary in there (other than the large tumour of course!) the pathology concurred in not finding any definitive signs of cancer beyond the tumor.
I have cancer but none of the other biopsies came back positive so there was no evidence that it had spread anywhere in my abdomen, which would be the most likely place for spread. Because cancer is tricky, she couldn’t rule out that it hadn’t spread there or to the chest or shoulder where the worrisome spots had appeared in my CT scans.
The initial diagnosis was ovarian cancer, but a quite rare form of it. This form has pros and cons. It doesn’t have the same extremely high recurrence that the common form of ovarian cancer has, but if it does recur, it is highly likely to mean a very quick end because it is chemo resistant.
This form of cancer is also tricky to diagnose because its pathology has a lot in common with GI cancers. Indeed, it is sometimes found on the ovaries, masquerading as ovarian cancer whereas that tumor is actually a metastasis from the pancreas or colon, etc. which is the primary cancer source.
Therefore the next six months (at minimum) will be a time of intensive monitoring and diagnostics. I’ll have a full GI workup with the specialist whom she consulted before and after my surgery. He’ll do all the scopes to see if anything is lurking in there. I’ll have physical exams and blood draws to check my tumor marker levels. And I’ll have CT scans to monitor my neck down, check for anything new growing in the abdomen, and generally be on the lookout for anything suspicious.
If all goes well and I am clean for those six months, I will move to checks every 3 months for 3 years, then every 4 months for 2 years and finally once a year after 5 years.
My doctor seemed shocked that we weren’t turning cartwheels at the news – I had cancer but it was likely of the good variety! I was grateful and relieved – this was so much better than what we all feared and believed the outcome of surgery would be. But I was also extremely sad. I have cancer.
I felt bad not being happier for her and able to exhibit the joy she expected, but given the choice, I would have preferred “benign” to “cancer with no evidence of spread.” (Writing this now with a month of perspective, I can see how this translates into the future too – I need to learn to be grateful for every clear scan moving forward and not dwell on the fact that I have the uncertainty and dread that cancer carries.)
We were filled with questions, but she had to dash off to her next appointment and promised to be in touch soon. She told us she was arranging to have my biopsy slides reviewed by another pathologist just to be sure. I am so grateful for her thoroughness and for her expert and skillful care.
The nurse arrived, took out my IV insertion ports, gave us our discharge packet, popped me into a wheelchair, and we were free!
