07/29/2021
Update:
It’s been a hot minute since I posted a health update. I don’t have much to report, outside of the chemo cycles and their fun side effects, which rotate weekly (and I just deal with them as they come). I haven’t felt an incessant need to provide a running monologue of the chemo, the nausea, the exhaustion, or the painful neuropathy in my feet. Blah blah blah. Old News Flash. None of those deets are pretty, but it is what it is until I finish the treatments and have new PET and CAT scans to determine the efficacy of the chemo. However, since I keep getting asked for updates, I’ve decided to share some gross stuff. 😈
Background: I have Stage 4 cancer and woke up from a big surgery 4 months ago with a surprise ostomy bag attached to my stomach because they had to resect and re-route my colon to the left side of my stomach, where it will forever rest, peeking outside of my body where I imagine it probably enjoys the new view.
The surgeon did this because the cancer had spread super aggressively and super fast from my ovaries to my colon (where it ate a very big lunch of 2 feet of braised colon as the appetizer and a large portion of poached re**um as its main course). There is not enough remaining tissue to reattach the colon to the place it used to reside, because the re**um is now disintegrated. Who knew that was even a thing?
As fate would have it, I’ve always appreciated bathroom humor, whether the protagonist was someone else, or whether the protagonist was me.
Disclaimer: If you are the pious, easily-offended, prim and proper, modestly-sensitive type who doesn’t appreciate p**p stories, avert your eyes and go visit the timelines of those who post filtered selfies with pouty lips and slightly-squinted eyes that peer sideways in a whimsical gaze with a motivational quote underneath, cuz Baby, this ain’t gonna be one of those posts.
Honestly, in the three months following surgery, I was traumatized and horrified and I hated the bag and its colonic resident. I was also recovering and in bad shape physically and could barely walk or talk. My mother and sisters had to help me clean out and change the bags every time the contents made their way to the bag. Basically, I’ve been a toddler in her 40s who needed her diaper changed rather frequently. In the beginning, I put in my AirPods and turned up the music and donned some eyeshades and laid on my back while the bag was changed. I didn’t want to watch or listen and I had no interest in learning about a new and embarrassing life routine. I was convinced that I would never figure out all the required accoutrements and which ones went where. Sometimes the change would take up to 30 minutes because my skin was irritated and the bag refused to stick. Even as I healed and started feeling better, I would still call my mom when I needed “The Big Change,” and she would happily drive to me to do it.
Just before chemotherapy started (which I was totally riddled with anxiety and freaked out about), my parents and lifetime friend, Andrew, took me to the ocean so I could have one last hurrah before the treatments started. It was beautiful. The ocean was angry with huge waves and we collected lots of shells and watched seagulls dive bomb fish for hours. We decided to rent one of those 4-seater beach buggy golf cart things by the hour so we could drive on the sand and explore more ground. It was expensive and we only had three hours to explore before returning it. It was super fun, but extremely bouncy. Halfway through the 3-hour ride, I felt a strange ripping sensation on my stomach and then I felt a fastly expanding squishy something and I didn’t want to believe what was happening, but it indeed was. The bag had ripped and its contents were exploding under my clothes. I was riding in the back with Andrew and my father was driving, and I made the announcement that we needed to find a bathroom STAT. At this particular beach, there are dirty port-o-potties scattered up and down the coast with enough room for a small child to turn around inside. I am definitely not of gaunt or emaciated proportions. I need some space. A miracle happened almost instantly and we spotted a somewhat proper bathroom with concrete walls. Several construction workers were standing around in front of the women’s bathroom and my mom grabbed the emergency ostomy supplies (which I take with me EVERYWHERE now, as my personal diaper bag). 😂😂😂
We ran up and told the men we had a medical situation and we needed the bathroom. Those were the most gracious, patient men. They happily let us through and told us to take our time because they were getting paid by the hour.
The bathroom was nasty. It smelled of all the horrible things you can imagine. The concrete floor was dirty and sandy with a pool of standing water, but it had two stalls, one of which was a handicapped stall with a grab bar and plenty of space, which is exactly what we needed.
In that moment, I was horrified and angry. I removed my t-shirt and tank top and surveyed the damage from the exploding bag. P**p was EVERYWHERE. My midsection was covered in it. We did the best we could to clean up the situation with the resources that were available. Wet wipes are my new best friend. Some of it fell on the floor. Some of it landed on the toilet and some of it managed to hit the stall door. It was a slow motion nightmare and my mother took control and convinced me that we could change into a new bag in the nasty stall while I was standing up (which was a first). And she did it. It took forever to change the bag, change clothes, clean up the crime scene, and creatively wad up all of the p**py clothes and encase them in a plastic bag that we may or may not have taken from the stall.
We washed our hands and marched out, thanked the construction workers, and jumped back onto our beach buggy to resume our ride. I texted my best friends the horrifying deets of the exploding bag, but never imagined I would share it publicly. However, I have no shame now. This is my new reality and I have accepted it. Since that time, I’ve had three more big explosions and they horrify me every time, but I am happy to report that I have now found the perfect supplies that work for me, and I was also reprimanded by my doctor and told, “change your own bag! Your mother is not going to do this for you forever!” So after a few practice attempts, I can now change my own bag in 5 minutes. It feels very empowering, because I was sure that I would never be able to do it by myself, but now I’ve got this. 💪🏽💪🏽💪🏽
On another note, no one warned me that forevermore, I will never, ever feel a fart coming. I grieve those blissful days when I could feel the air bubbles making their way to the exit and I could squeeze the door shut and control whether the air exited or remained inside. Not anymore. All of you people with normally situated colons should take a moment and relish in the blessed opportunities you have of maintaining dignity and composure in social situations. Not me! I never know when it will pop out. There is zero warning. The first time it happened, I heard the loud blast of a tuba reverberating around the room and I had no idea it was me. By the time I figured it out and processed the horror of being completely out of control, I asked my colorectal doctor what I was supposed to do. I was advised that I should point at someone else and blame them. So I have. Multiple times. My poor sister gallantly received blame for me twice in the hospital elevators. I also have a buddy who now instinctively says, “oh, ‘scuse me,” and graciously takes the credit. So now I just laugh about it and clap my hand over my stomach when it roars. Sometimes I can muffle the sound, but mostly I cannot. 🤷🏼♀️💨 How about that for karma? This situation was literally made for me.
I have multitudes of interesting p**p stories and fart stories, but hopefully the aforementioned occurrences will suffice in satisfying all of you who have been curious and concerned about me.
I am doing good, emotionally and mentally. I have dark humor and I constantly laugh about my situation. Physically, I have good days and bad days. When I have bad days, my sisters come and stay with me and babysit me until I feel well enough and regain enough energy to function by myself again.
It feels super weird to be in the spotlight through this journey, but I so appreciate all of the well-wishes, visits, text messages and snail mail I’ve received. It’s very humbling and sweet to be the recipient of such an outpouring of love.
Peace out for now. ✌🏽❤️💩🚽
