You may have noticed I haven't updated in a couple of weeks. I hope it hasn't worried anyone, but I'm okay. I'm better than okay, actually! I'm great!
I did, however, have an eventful month. Between an early trip to PA to visit in-laws, three trips to Chicago to see my doctor, an unexpected colonoscopy (no shame, here), and an emergency port-a-cath removal due to an infection, I've been so busy, I've hardly had time to write. It has all been good news, and I even found out the little bump on my incision scar was exactly what I had begun to suspect: a retained suture granuloma. Totally benign and it will just take time to resolve.
My colonoscopy came back great. It was a strange experience to fall asleep knowing that I was about to be violated, but I actually was more worried at the time that they wouldn't give me enough sedation and I'd be awake for the whole thing. I told my husband I did not relish the idea of getting roto-rooted while being conscious. (I was not conscious and I am pretty sure they didn't use a roto-rooter.)
I also learned how disgusting sugar is to me now when I couldn't have anything but clear liquids. Yuck! I had to drink Gatorade and I made the mistake of also trying a Sprite. They were disgusting. I'm clearly not used to sugars now.
The rest of the story is a little convoluted, so I'll have no hurt feelings if you skip to the bottom. (Plus, I just talked about getting a colon roto-rooted, so I may have crossed a barrier that can't be undone.)
During this sabbatical, I had an interesting answer to prayers, which truly was not what I expected.
You see, we're still trying to figure out our finances for the future. The risk is high that I'll have a recurrence, so I need to be careful about not exhausting our resources and credit immediately. However, I also don't want to live as if I will definitely have a recurrence. It's a tricky spot to be in, balancing somewhere between the recognition of how serious this disease is while also recognizing God's rightful sovereignty, all while attempting to not bankrupt our family.
Anyhow, I have two options on the table as far as additional maintenance treatment. One is a clinical trial, which I am very interested in doing. I'll write more on that if I get in. The second possibility was having a specialized program created for me using information found by the Gardant 360 test, which takes a sampling of circulating tumor-derived cell-free DNA or ctDNA. It's kind of complex, and I won't get into the specifics right at the moment, but I could not do both options at the same time. Clinical trials require you to agree to not take any supplements of off-labels during the study period. I had the option of getting the tests ran and attempting to squeeze all that treatment in prior to the trial, which would have been nearly impossible, or only choosing one.
Traveling to Jacksonville, FL for the trial will cost our family a lot of money. Although, my parents do have some limited ability to get me housing and I have been able to get in touch with an organization which does free flights to medical appointments, it's still going to be expensive. Possibly because my mom keeps dreaming of taking her grandbabies back to Disney while we're down there, and I know I'll be on the hook for some $40 mouse ears and unlimited pineapple whips if that happens. But don't tell them.
(That's a joke. Kind of. ...Just laugh and nod.)
The other treatment option would also cost a great deal of money because after the initial test, not much is covered by insurance.
I prayed that I would have clear guidance on what to do and that if I were not supposed to do something, that God would prevent me from doing so.
Fast forward to August 16th.
I awoke with the gut feeling that I should try to somehow do both options. I knew we couldn't afford both. I knew it would be a worldly impossibility, but something just stuck with me that I needed to try.
I figured, if God wanted me to do it, he'd make a way. It seemed crazy to me, but I figured, why not? I told my mom and my husband we were going for it.
Later that day, a floating nurse at my local hospital accessed my port. I shouldn't have let her anywhere near it, but she'd already stuck me by the time I realized she wasn't educated on how to use it. The first clue was when she kept muttering to herself, "I don't know what I'm doing." The second clue was when she handed me items that were supposed to be sterile and asked me to "just keep it off the floor, that's the most important thing." I sat there, holding the end of my IV and giving shifty-eyed silent pleas to any hospital personnel who walked past.
It didn't work. We finally called another nurse when she realized she had accessed it wrong and needed to re-stick me.
I was a little concerned that the floating nurse was going to bring out some crystals and start dancing around me with ribbons.
On Tuesday, my nurse at the Block Center- who is amazing and does know how to access a port!- drew my blood for the Gardant 360 test.
Later that week, I developed a port infection.
I don't want to blame the floating nurse or anything, but... I'm blaming the floating nurse.
A port infection is a big deal because it is a direct feed to veins near your heart. An infected port is a medical emergency, especially if you're neutropenic, which I had been earlier in the week.
I was admitted to the hospital overnight Thursday and ended up having an emergency surgery to have the port removed Friday morning. (The staff there were amazing, by the way.) I was a tiny bit emotional about it, mostly because my last experience with general anesthesia was an awful one. This one was fantastic. Not only did I not almost die, but the folks at Schneck were amazing. The nurse (I think she was a nurse?) who stood beside me while I slipped under assured me that I was doing great and that she hoped I had sweet dreams. I told her, "I'll dream of a nice, long remission." She said, "That's what we'll be praying for." In slurred speech, I said, "That's the most important thing."
Whoever she was, I hope she knows that she single-handedly reversed my terror of GA.
Anyway, here's the really interesting part:
I had to have a port to complete the one treatment option. So, that ruled out the extra treatment.
However, I did get the test results from the lab draw, which was covered by insurance: DNA alterations in ctDNA NOT DETECTED. So, that means that there was not enough ctDNA to find what DNA mutations there are.
That's significant, considering my tumor itself had a 69% tp53 mutation rate, which is one of the nastiest mutations you can have. (It's also incredibly common in ovarian cancer, which I have written about before.)
At the moment, there is none to be found in this particular liquid biopsy. Not just no tp53 mutations in the ctDNA, but no ctDNA.
Now, as always, that doesn't mean there are no cancer cells in my body. That's unlikely. But it does mean that the levels are low and I consider myself very in remission.
I asked my nurse, "Now what?" because we had talked about how bad an idea it would be to get things like curcumin in peripheral veins.
"Now, it's time to up your activity," she said.
I thought she mean exercise, so I nodded, stomach sinking.
"Now, it's time to go out and live! It's time to stop letting this hold you back. You're obviously still here for a reason, so go out and enjoy life."
And that's exactly what I plan to do! I will take a bit more of a break today and tomorrow, waiting for my incision to heal and my wbcs to bounce back completely, then I'll get back on the bandwagon with writing. I have lots of things to write about and some recipes to share, so hang in there with me. :)
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