It has been 5 months since my first surgery. In that time, I’ve healed, learned to poop into a bag, undergone surgery to get rid of the bag, learned to poop out my butt again, moved back home, gone back to work, and undergone 6 more rounds of chemotherapy. It sounds like a lot, and I guess it is, but the hardest thing I’ve done in the last 5 months is wait. I wait in waiting rooms, I wait in doctor’s offices, I wait by my phone, I wait by my email, hitting refresh and refresh and refresh. So much of this cancer journey is defined by the empty spaces, the not knowing. Was the surgery successful? We have to wait for the pathology report. Is there residual disease? We have to wait until the next scan. Is the chemotherapy working? Let’s wait a few rounds and scan then. What does the scan say? Let’s wait for the doctor to get back to me. Am I a candidate for a liver resection? Let’s wait and see what the tumor board says. No final decision? Nope, gotta wait for the next PET scan.
The waiting is excruciating. I’ve never been a patient person, so I’ve been pushed to my limit. I have learned to embrace the cliche (don’t borrow trouble), the wise proverb (worry does not empty tomorrow of its sorrow, it empties today of its strength), and Bobby McFerrin lyrics (don’t worry, be happy). I don my “carpe the fuck out of this diem” socks often, and I continue to find silver linings in the storm clouds.
So what am I waiting for now, you ask? Here’s the deal: I’ve been having some major abdominal pain, so my oncologist ordered a CT to take a peek inside my abdomen. The good news is that, as far as the CT can tell, there is no new cancer growth in my abdomen. The bad news is that there is a new mass on my liver. A little 1.1 cm growth. The plan was to wait (WAIT) until after my next three rounds of chemo, rescan, and reevaluate my treatment. So I waited (WAITED) the six weeks, had the CT, and waited (WAITED) to hear from my doctor. When he finally called, he told me that while the chemo had not shrunk the tumor, it had seemingly kept it stable, so he was going to refer me to a liver surgeon. With surgery, I might achieve the coveted NED (no evidence of disease)!
I waited (WAITED) a few days for a call, and finally had an appointment. Another few day’s wait (WAIT), another half hour in a waiting room (WAITING ROOM!). Then I spoke with the surgeon who, unlike my previous surgeon, was a complete ass devoid of all bedside manner. He told me that surgery might not be indicated in my case because of my history of metastatic disease, specifically peritoneal. He compared me to an old car, saying, “If a car has no tires, you’re not going to replace the carburetor.” He told me that removing the mass would likely not increase survival, so it might not be worth the trauma. However, because my case is complicated, he was going to take my case to the tumor board, and they would decide the best course of action.
After another few day’s wait (WAIT), I heard back from Dr. Asshat. He told me that the surgeons on the board recommended against surgery, but the intervention radiologist suggested an ablation. An ablation is a procedure in which they insert a long needle into the liver and burn off the tumor. It has a lower success rate than surgery, but it would be easier on my poor, battered body. Ok, great news, right? Well, not exactly. The decision to perform the ablation depends on my having a clean PET scan. I can have no other evidence of disease. So I called to schedule a PET, and the first available appointment wasn’t until more than a week later, which is this coming Tuesday.
So now I wait. And once I have the PET, I’ll wait to hear from the doctor. Then I’ll wait to begin my next round of treatment, whatever that may be. Then I’ll wait to see if it was successful. My reality has become an endless nightmare of hurry up and wait. But I can’t change what the PET is going to show, so all I can do is enjoy this mini break from chemo with as much food and friends and fun as I can.
I’ll let you know what happens. Happy waiting!
Silver lining roll call:
- I’ve become a much more patient person…kinda.
- My new “carpe diem” attitude is leading to my seeing more theatre. God, I love a good musical.
- I’m eating more dessert. My new motto is “If you’re gonna die young, die fat and happy.” Someone make me a t-shirt!
Regarding hair loss:
- Having no hair makes it sooo easy to get ready in the morning.
- Hair loss isn’t just for head hair. I’ve saved a fortune on razors. I’ve also saved many minutes in the shower, which is good for the environment. Win win!
- Small children like to rub my head. I tell them it’s good luck.
- I have channeled my inner badass. She’s pretty cool.