Cancer Recurrence Update: May 2023

***NOTE: Please know that any unwarranted advice, unsupportive comments, or opinions will not be tolerated this time around and you will be blocked. I apologize for the rigid stance but I cannot mentally and emotionally deal with that again while going through this season. I really struggled last time.

Instead, if you have opinions, comments, or advice, pray that God speaks that to me. I'll receive it better from Him than anyone else anyways. Thanks in advance for understanding and respecting this boundary.***

To read my last post, click here.

Monday, May 15, 2023:

This morning we met with Dr. Chris, the radiation oncologist. I felt nervous driving there and definitely had a different idea in my mind about how this appointment was going to go. It opened my eyes to what is coming (lots of pain, not wanting to eat, and being extremely tired). Before meeting him, I believed that Proton therapy was going to be easier than traditional radiation (thank you Google for the false sense of hope/truth). I also thought I could work full-time and maybe even still go to school. ABSOLUTELY NOT. He said most full-time workers end up working 15 hours a week during radiation because they are so miserable and they'll be on narcotics. I also get the joy of being bolted down to a table from head to shoulders so he recommended an Ativan if you are claustrophobic, which I am a little. So here's to pain, drugs, sleeping all day, and taking 2 months off of work. *cheers*

I won't lie to you, I've felt different since leaving that appointment. My spirit feels crushed. I'm utterly petrified. I cry multiple times a day. I feel like I fell into a dark pit and I'm trying to claw my way out but I can't. I feel like the "door of life" just slammed shut in my face. I have moments where I believe that the only thing I have to look forward to at this point, is death.

I know, I know. I just brought every person reading this way down. I just want to be real with where I'm at mentally. I wish I could tell you that I've never felt so optimistic and wish people could look at me at say "Wow, look at her! She's so strong and full of joy! Good for her!"

But since I'm a little bit of a Debbie downer right now, I can also hear opinions such as "You know, you don't have to put your body through all of this. There are other options." or "Wow, what a pity party. Do you know what other people have to deal with? This is nothing." I too have also wondered the answers to these questions. I was told last time "If you have surgery, you'll die." "If you have radiation, you'll die". I'm scared if I don't do these things, I will die. In fact, we would now argue that NOT doing radiation last time is precisely why it has returned and is now worse.

Anger. Anger is a whole other aspect of this now too. I'm angry because of comments that it could be "high grade". Some of that anger is out of fear. My life expectancy drops SIGNIFICANTLY if it's high grade so you'll excuse me if I get defensive when this is suggested. Especially considering we don't know and won't know until after surgery. I want and have to believe it is because of the tumor spillage when it was resected the first time (before we knew it was cancer). It's the only thing that makes logical sense to me.

The other part of being angry stems from the fact that the tumor spilled. I'm angry that we didn't do a better job of cleaning up the mess but as all of the new doctors have told me, they wouldn't have done anything different than what the other doctors did. "Do a 2nd surgery and then monitor it from there". I guess I'm just angry it came back. So I'm grieving.

I'm grieving the fact that I can't go to school this fall and I'm even further away from being a therapist. I'm grieving that having kids is getting pushed out even further (hello 2026). I'm grieving that my wedding day may be more of a cry fest than a happy occasion. Is there such a thing as waterproof foundation? Asking for a friend!

But... in the midst of all of this sadness and anger, God peeks through the darkness. He speaks to me. He tells me to take a breath. To trust Him. I tell Him my fears or what I believe is going to happen. And somewhere in there, I get a moment of peace. With peace, I feel my mood lifting. I begin to feel joy even though, deep down, I'm still petrified. I change my focus from how hard this is all going to be, how ugly I may be after all of this, or even death to getting excited about having this FREAKING CANCER OUT OF MY BODY FOR GOOD.

Friday, May 19, 2023:

Today, we met with Dr. John, the facial nerve specialist (aka facial plastic surgeon). This will sound so odd but dude relieved a lot of my fears. Well, not as it concerns cancer but as it concerns the outer parts of me. The parts that people will see on a daily basis. My face. My smile. My eyes. You know, all of the things you have the power to move on your face.

Since the cancer is on the main trunk of my facial nerves where all of the facial nerves connect, this procedure could be risky (see image below. Red circles are confirmed cancers. We suspect more across the neck.) As I stated before, doctors cannot tell the difference between scar tissue and cancer so there's a chance that they will have to sacrifice and cut the nerve.

The cool part about this is if they have to cut the main nerve they end up stealing nerves from the other side of your face, whether from your ear or your jaw bone (how you bite down). The jaw bone muscle isn't actually connected to these branches so they could borrow that and reconnect it to where they cut. Then if that were the case, I'd have to bite down to activate the nerve in order to smile. I mean this isn't necessarily cool for me but I just think the science behind it is WILD.

Now, let's say they have to cut the whole main trunk as well as the nerves that go to the eye, cheek, lips, etc. Then, what they could do is take facia from my thigh muscle and create bands or "suspenders" for the face so that I could move my face like normal. They would also place a weight inside of my eyelid so I can blink.

Listen, we aren't hoping this happens. We are hoping that Dr. Karin only has to remove the tumor, 20 lymph nodes, and tissues, fill my face and neck with abdominal fat, and be done with it. Facial suspenders are a worst-case scenario. But again, I just think it's crazy how advanced science has gotten that people like me don't have to worry about living the rest of their lives looking as if they had a stroke or can't blink their eye (and then end up losing their eye because it dries out).

We took pictures today of my before so he can make sure I look as much like my normal self as possible. The other crazy part of this is, we don't have to wait until after radiation. In fact, Dr. John said he can tell while I'm in surgery what the outcome will be and can repair the damaged nerves right there at that very moment. It's a little scary knowing I may wake up with a weight in my eye, and my thigh operated on, but also kind of grateful that I won't have to keep having operations.

The flip side to all of this is that even if nerves are cut, not cut, repaired, or don't need to be repaired, I will still have some type of temporary paralysis. He said whether they have to put the weight in my eye and take the fascia out of my thigh muscle to reconstruct and reanimate my face, or even if they don't have to do anything, you are still looking at about 6 months of paralysis until things heal and restore to "normal". This is just the facial animation side of things, we aren't talking about the incisions or anything like that right now.

Funny story: Right after we got done taking pictures of my face in all sorts of silly positions, I saw an ad on the wall for "Juvaderm" (aka lip fillers). I turned to him and said with a gasp "You all do lip fillers here?" and he smiled and said "Yes." "Well, if you want to just tack that on the surgery order, you are welcome to." I said. He just chuckled a little. Inside my head, I thought "Dude, thinks I'm playing but I'm totally serious." I let it go but guys I really may bring it up again. "Just tack it onto my bill, please! Thanks!"