There is no way of knowing what the future may hold, and I certainly did not expect the following story to ever be a part of my treatment history.
Following a debulking surgery and four rounds of systemic chemotherapy in 2014, I enjoyed a year of disease-free PET/CT scans throughout 2015. Just days after New Year’s 2016, however, I found out that my attempted return to normalcy was over.
A scan performed three days after Christmas had revealed that my cancer was back. My first thought was that I’d be told to go home, relax, and that I’d be monitored for a couple of months. Unfortunately, that wasn’t the case. Further treatment was required, and quickly.
I had been living in Los Angeles for a little over four months when I got the bad news, and knew that I needed to return to Pittsburgh and undergo treatment with my original oncology team. Following a drive across the country (in mid-January) I met with my doctors in Pittsburgh to discuss treatment. It was decided that I would undergo a second debulking surgery throughout my abdomen as well as a unique form of chemotherapy: Hyperthermic Intraperitoneal Chemotherapy (HIPEC). I was determined to not let 2016 be another year without a summer, as 2014 had been, so I was eager to get treatments underway. My surgery date was set for the first week of February, less than two weeks after my return to Pittsburgh.
28 days passed between my appointment in Los Angeles and my surgery in Pittsburgh. That time was spent driving across the country, getting my head on straight in anticipation of treatment, and indulging in all sorts of calorie-laden food and drinks. I wanted to pack on a few pounds in anticipation of knowing I would lose 20 to 30 of them after surgery (which happened the first time), and I also wanted to bid farewell to the foods I knew I would be giving up after treatment by indulging in them one last time.
My last meal before my bowel-prep day included a cheeseburger and milkshake and it was glorious. The bowel-prep? Not so glorious. In case you’re not familiar, the day before going into major surgery is spent flushing your bowels of all waste. This is done by chugging down a gallon or so of Gatorade which has been mixed with laxatives, and not eating anything at all. It is absolutely awful, and if there was any way around this part of the process I would take it in a heartbeat.
Aside from that, I thoroughly enjoyed my last few weeks of freedom and they were mostly positive. Each day was tinged with a bit of unavoidable anxiety, though, as I intimately knew the horror I would soon face.
On the day of surgery I woke up and took a shower, vigorously scrubbing my entire body with Hibiclens (an antiseptic skin cleanser provided by my doctors). It was a typical wintry morning, unlike the early July morning which kicked off my first surgery in 2014.
I arrived at the hospital that chilly February morning (Groundhog Day, in fact) and the pre-surgery process began. While the bowel-prep is one of my least favorite aspects of the surgery experience, the moments spent in the surgery-prep area are some of my favorite. (If I had to choose favorites amongst an all-around terrible experience.) There is something about handing over all my clothes, jewelry and possessions, and submitting my body to the team of doctors, that instills peace within me. I embrace my powerlessness and focus on the faith and hope that I will be well taken care of.
There is a sense of calm when I’m lying in the bed of the quiet prep room wearing a hospital gown, booties, leg compression wraps around my calves and a heated blanket over me.
The IV and nerve block insertions are anything but pleasant, but their effects quickly add to my calm feeling, so I welcome them. Looking back, it’s crazy to me that I can now count on two hands the number of times I’ve gone through this pre-surgery ritual. I know exactly how it will go, and I now rarely feel fear before I’m wheeled back to the operating room. I think maintaining a peaceful mindset and relishing those final moments is paramount.
The debulking surgery and HIPEC took over 10 hours to complete.
A day that I barely remember was one of the most excruciating for my family, who had to wait and worry through all those hours. My first debulking surgery took about four hours, but this treatment included a lot of other variables, and the addition of HIPEC. My original abdominal scar was reopened and extended up another 6 inches or so. Apparently there was a lot of scar tissue to deal with, which added a significant amount of time during the debulking portion of the surgery.
And then there was the hot chemo.
HIPEC is an absolutely horrifying procedure and I’m glad I have zero memory of the experience or after-effects. To briefly explain: my abdominal cavity was opened up/debulked, then filled with liquid chemotherapy drugs, which were then heated. Someone agitated my body so the liquid would swirl around my insides, reaching every nook and cranny. Eventually the drugs were drained out of me and I was closed back up. This detailed (and graphic) article about a man who also received HIPEC more thoroughly explains it, if you’re interested in learning more about the unique procedure.
Following surgery/chemo I was moved to the ICU where I spent several nights.
I don’t remember much from this time other than the unrelenting and intense feelings of dehydration. I was given fluids intravenously and only allowed to suck on water soaked sponges, which did nothing to quench my thirst. There was a tube going through my nose down into my stomach which pumped out anything I swallowed, so I was not allowed to put much in there. It was excruciating to go so long without drinking anything and I pity anyone who had to put up with me during that time. I also received two blood transfusions, of which I have no memory.
As I neared the end of my stay in the ICU, I became aware of all the other new additions to my body:
– a tube in my lower ribs to drain fluid from around my lungs
– a tube in my lower abdomen also for draining fluids
– a catheter
– two new IV’s: one in my neck, the other into my wrist.
Looking back I’m not sure how I didn’t go crazy with so many tubes sticking out of my body, but I have to credit drugs for getting me through that part. After 3 nights in the ICU I was moved to the regular recovery floor, where I had spent two weeks recovering from my first surgery less than two years prior.
Once I returned to the floor I was very familiar with, I spent 10 more nights there recovering. Each day was full of activity: x-rays on my lungs, measuring and dumping urine, blood draws from each arm, sponge baths, draining fluids from my tubes, heparin shots every 8 hours to prevent blood clots, shuffling around the halls with a walker, taking my temperature, checking my incision… it all seemed endless and I couldn’t wait to go home.
But each milestone meant I was one step closer to getting out of there, like having the tube in my nose yanked out, and then the eventual removal of the one in my ribs. Both were such a relief. The removal of the IV in my neck and then from my wrist felt like heaven, but giving up my personal pain medication button was bittersweet. That little button that only I could control helped me so much, but letting it go meant I was almost ready for discharge.
I was eventually allowed to drink fluids (hallelujah!) and then move on to popsicles and finally some solid foods. The final stages of discharge included my ability to eliminate (ugh) and maintain a temperature below fever-level. Once those two items were checked off the list, I was a free bird with clean pathology reports in-hand. Thankfully there was no curveball on the day I was released, as there was during recovery from my first surgery.
Unfortunately, I had to return home with some accessories: my catheter, internal ureter stent, and stomach tube/drain were all left in place for a little while longer due to some complications. An in-home nurse visited several times a week, and by mid-March everything had been removed.
I made progress with recovery each day and looked forward to my upcoming scan at the end of April which would hopefully confirm what the pathology reports had revealed. All of my other scans had been PET/CT, but in an effort to eliminate further exposure to radiation, my doctors wanted to switch to an MRI this time. The process was a bit longer and a bit more uncomfortable, but a scan is a scan, and luckily this one came back showing no signs of disease. Full recovery could continue, and I could return to figuring out my new normal.
As I sit here, four and a half months later, I have a hard time comprehending all that has happened.
I was able to physically recover much quicker this time around, and perhaps that was due to my outlook. Going in to surgery with the conscious decision to remain positive, and to positively change my life afterward, was a much more powerful place to be than where I was during my first treatments. I am still recovering, though. Physically, my right hip remains completely numb, my midsection is split with an incredibly large scar, and I have been plummeted into early menopause due to my complete hysterectomy.
The emotional aftershocks also remain, and are much more difficult to adjust to.
I have days which I describe as “storm clouds rolling in” where I am completely immersed in sadness. Sadness for all that I have lost, all that has changed, and all the new-ness and wreckage that I am left to sort through.
My goal is to communicate transparently just how much cancer uproots all aspects of life, both physically and emotionally. Nothing has been the same after my diagnosis and subsequent treatments, and it can feel incredibly lonely, and as if life is spinning out of control. These days I try to ride the waves, not let them beat me down. I am so happy to have this platform where I can articulate my experiences and pursuit of a “cured life,” which will forever be ongoing. I continue to aspire to be the best version of myself and to live a life that is happy, all in conjunction with cancer.