Since the last week in September, I have lived in a state of slow-motion panic. Feelings of hope alongside feelings of despair and panic. I had another kidney stone, not as violent as the first time, but went to go have it seen about with my regular doctor.
We did a CT scan – no contrast. The scan didn’t show a stone but showed something on my right hip. The results were sent to my oncologist who ordered a bone scan.
CT with no contrast - Around $800.
The following week, a bone scan was done. My hip didn’t show up, but something on my left rib showed up. My oncologist ordered a PET scan.
Bone scan – Around $1500.
The next week, I had a PET scan. I waited anxiously for the results. Over the weekend. I got an email from the nurse saying, “NO CANCER.” Celebrations were made – fist pumps. All around me relaxed.
PET scan – Around $2500.
I had already had an appointment with my oncologist the following week but wasn’t worried. It was routine. While in the office, I was blindsided with the news that they found an FDG avid lymph node near my right collar bone. That means it lit up in the PET scan. The world constricted once again, and I ended up only hearing a few things she said after that. Funny how people can be speaking a language you grew up understanding, but only a few words and phrases get through the emotional boil over that simultaneously occurs. I asked her what happened if it was positive. She said she didn’t want to answer that, but I made her. A string of unintelligible words followed. Driving slowly through a time warp-induced fog, I hear the words “Stage 4” and “treat it aggressively,” and I immediately regretted asking. Those words lodged squarely in my gut where they have remained, much to my chagrin.
We decided on a biopsy of this lymph node. I had that done on Wednesday. Standard procedure, a bit painful, under the muscle that turns your head.
Biopsy procedure – Around $2300.
I say the prices to illustrate the two co-occurring storylines that happen when someone is fearful for their life.
On the one hand we have the desperate, almost all-consuming fear that the cancer has spread. The slow death sentence. The “how am I going to die” type stuff. The trying to focus on the task at hand yet fighting off intrusive thoughts about how this could actually be “the end.” Clicking and refreshing MyChart, over and over, waiting for the results to say anything other than “pathology results are pending.”
On the other hand, we have corporate health care in the U.S. I have insurance. I work a full-time job. But I am a single income person. We don’t live in a country that helps single income people. Especially if that person has a disability or health problem. It would probably be cheaper for me to quit my job and get on disability. Then, my medical bills would be paid, I’d get some money for groceries, and living expenses. But I won’t do that.
The more hospitals I walked into over the past month, the more agonizing the wait became. But it was exacerbated by the fact that someone was demanding money from me that I didn’t have. Isn’t it enough to have to deal with the fact that my cancer may have spread?
So – the answer to the money question? I pay a few hundred dollars here; I pay a few hundred dollars there. They’re lucky I can even do that. I’ve finally lost the worry about medical bills going into collections. I used to scramble and beg and apologize. Now, I have no apology. I literally cannot do it. There’s nothing I can do about the medical bills. I’m doing the best I can to even function in my life, let alone go broke doing it.
Now we get back to the main storyline.
There’s a thing called MyChart. Every hospital and oncology place has some version of an app or a website where you can get your results. Many times, as my friend knows all too well, they come to me before the doctor has a chance to even see them. It’s not the doctor’s fault, but that’s how it happens. And if you’re proactive, like I am, you not only watch for the results, but you google all the funky words that come along with it.
I got results in MyChart yesterday afternoon around 3:30. November 11, 2022. Veteran’s Day. It seems ironically appropriate. Lily was beside me when I read it and my entire body locked up. I sent it to Jalesa, asking her to please read it differently than I had. To please see something different than what I was seeing. And I didn’t even have to google it.
METASTATIC CARCINOMA
Did they really have to “all caps” it? Well, yes. It seems like a phrase that never needs a lower-case letter. One that should always be shouted with some measure of venom.
The doctor never called me to confirm my worst fears, but I couldn’t wait the weekend away in a state of anxiety. Not with that phrase screaming through each and every cell in my body. Not when I kept trying, and failing, to read it incorrectly.
When I first heard “cancer” thrust my way, I walked on the Trinity Trail for a month before I could own it.
I don’t own this yet. I haven’t made peace with it.
But last night, about an hour after I sounded the gongs, my heart started to feel more peace. I don’t think that’s an accident. Thank you all for praying for me. And my family. And if I’m close with you, you’re my family. Period. Blood has little to do with it.
So today, I stand on the ship, scared shitless, waiting for the side to lower to run onto that beach. I look around, and we all stand, ready to lean in like the brave soldiers in Normandy. Slowly headed for the place that very well may kill us.
I step off the ship, and we barrel ahead, petrified, yet determined. Teeth gritted. Together. All of us, running onto the beach where many of us will lose our lives. Where we have no idea what will happen. Scared. Puking. Shaking. Bombs, bullets. Salt water. Sand. Blood. Tears. Setbacks.
It is our D Day.
I sat beside someone in Texas Oncology one day. She was absolutely terrified. I told her, "You don't have to feel strong to be strong. And you don't have to feel brave to be brave." Today, I tell myself, and you, the same words.
Ready to fight. Ready to say, “what’s next?” I fight for me. But I also fight for you. If my words can help anyone else, then all this has been worth it. This is fighting - writing and not giving up.
I will write throughout this entire process. More than I did before.
Please share this post so I can get OUT of the two-county bubble. Thank you so much for reading.
One day, mountains.
Love to all.
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