Cancer Recurrence Update: August 2023

Thank you to everyone for your continued calls, text messages, prayers, meals, etc. You all have helped make this journey bearable for Matt and I and our family as we continue to navigate this season. It seems once we get over one bump, another arises and it has made this journey significantly different than the last round.

SURGERY

Most of you know that my surgery was very successful. We were planning on having some facial reanimation work due to this being my third surgery but to our and Dr. K's surprise, we needed NOTHING. The staff was amazing from the moment we entered the building to the moment we walked out. Everyone was so empathetic, fun, kind, and accommodating. There's nothing I love more than health care workers who act like we are friends. It takes the focus off remembering why we are there and the pain we may be in (whether emotionally, mentally or physically). What could have felt like staying in the hospital, felt more like staying at hotel but where the beds will tattle on you to the ENTIRE floor in the middle of the night when you try to get up. I learned that the hard way and maybe a moment where the RN and I weren't friends (oops).

Funny fact, I usually cry a lot while I'm recovering from anesthesia so bless everyone's heart for being so caring towards me (even though they may talk about it when they leave my room). I must also note that I cry out of gratefulness and happiness and am usually telling everyone "thank you" repeatedly. So I'm sure compared to other patients, me reacting like that can't be so bad, right?

PATHOLOGY

Getting the call about pathology was a bad news/good news type of call. The good news was that there was no cancer in my lymph nodes as thought based on the results of the biopsy. So the two confirmed cancer tumors were just tumors. The other part of the great news is the cancer was low grade! As I'm sure you can guess or know, low grade has a better prognosis than the high grade type.

The bad news was there was cancer found all over my parotid gland and the soft tissues of my neck. So all of the "sub-centimeter lymph nodes" that were caught on past scans were actually cancer tumors, not lymph nodes. This part of the news was heartbreaking for me. Knowing that there was "too many tumors to count" made me sick. Now, I'm being told I have "Multifocal acnic cell carcinoma (with a bunch of letters and numbers that identify involvement - rTN0N0 or something like that)

In some ways, I am so grateful they found all of those because that means all of those tumors are now OUT of my body. The other aspect is, how many are still left? Which is where radiation comes in. Dr. Jason told me in May to remember that surgery and radiation are just like cleaning your house. Surgery is like picking up the toys, dishes, clothing on the floor and radiation is like vacuuming the house. It picks up the particles you can't see.

RADIATION

Proton Therapy Machine

I am taking part in a radiation treatment called Proton therapy. Proton therapy is the newest cutting edge type of radiation. You can learn more about it here, it's pretty cool. There are only six proton centers in the country and I am lucky enough to be a part of this new treatment. Proton therapy is more targeted and doesn't just blast an area like traditional photon radiation. We can pin point an exact location while protecting my brain, vocal cords, eyes, ear drums, thyroid, etc. This means it protects the healthy tissues which leaves a better quality of life.

Getting this treatment though has been a nightmare in and of itself. Dr. Chris, my radiation oncologist, submitted the original request to insurance, denied. He requested a peer to peer, and following that, denied again. The insurance company then requested a case study. So Dr. Chris brought me in to have my mask made and he had to use that mask and create two plans, one using proton, and one using photon. They wanted him to attempt to prove why proton was a better treatment option for me than photon. Guess what, denied again.

I was 4 days from starting radiation and Dr. Chris' office calls to say that unfortunately, we will need to cancel treatment on Monday August 7th due to the all three insurance denials. I know they are fighting for me, so I calmly ask "what can I do?" I was told not to talk to the insurance company and while they are sending an urgent 4th appeal, I needed to throw a hail Mary and start looping in my employer. So I did. I email the entire HR pool stating "time sensitive request" just asking for a phone call. A woman called me and I explained everything that had occurred and what the goal was. She said she wasn't going to make any promises but was going to reach out to the director of HR.

The director of HR sent me an email and requested I explain further. Before I knew it, it was the director of HR, my providers office and myself all on an email string. Talking back and forth, sharing documents, creating a plan to go to the board of my employer and convince them to go to the insurance company to force them to pay for this treatment. One question to my providers office, "how much is this treatment?". Their response "$250,763.00". *Insert vomit emoji along with the feeling of panic* I knew this number would either convince my employer to help me or make them run.

Emails went on for a few more days. The morning of August 7th, I received an email at 6:30am saying the insurance company wasn't sure if they were going to make a decision within 72 hours or within 30 business days but HR told me if they respond with "30 days", she's going to the board and requesting emergency action.

9:00am, I received a phone call from Dr. Chris' office. "IT'S BEEN APPROVED!" the girl I've been talking to for days yelled! I told her I needed a second because I was about to cry. I must have said thank you ten times. She told me all I will need to pay is $610. "That amount I can deal with!" I said. Instantly, I felt relief but also knew "now comes the hard part". She stated she was so happy for me and it's such a relief for her as well to get this approved. What a sweet lady she was. Oh my goodness!

They were able to start my treatment this week which is amazing. Now, we are working on getting paperwork completed, schedules aligned with Matt and my family, co-workers trained so I can be off for the next three months for treatment and healing.

Thank you to those who were/are praying for me and those who prayed over me at church on Sunday! I won't lie, there have been some really low days even when I've tried to stay upbeat and joyful. If you know me, you know I hate the attention sometimes, but I've really needed the support and I am so thankful for each and every one of you!

Be on the lookout for a blog coming soon about what God has been showing me in this season!

KOKO

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