Cancer Recurrence 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.***

March 23, 2023: I met with my surgeon following scans from August, December, and March. (We will call her Dr. W for her privacy.) My favorite doctor (Dr. McEwan, the OG) left to pursue her dream to be a plastic surgeon on the East Coast last June. So I've been under the care of Dr. W since July 2022.

Anyways, Matt and I went to meet with Dr. W since we've been having some concerns about new growths over the past year. We discussed with Dr. W about that lack of trust, not just with her, but with the entire team. All of the mistakes that have happened, things going unnoticed, etc. She expressed understanding and explained her side of the story but it still wasn't sitting well. It was a respectful conversation but a very honest one. She recommended we get a 2nd opinion at a different hospital.

She gave us the "all clear" that day. I remember going home and asking Matt to remind me multiple times for the next few days of what she said. I knew logically what she said, but I didn't feel the sense of relief I had in the past. I hoped that the more Matt said it, I would eventually believe it in my soul. But I didn't.

April 26, 2023: I had my "second opinion" appointment with Dr. B. He stated he agreed with most of what Dr. W was doing but still had some concerns. As a fellow GAD "club member" (Generalized Anxiety Disorder), he said he was also curious about these "enhancements". I was scheduled for a biopsy just two days later. I was told to expect that the biopsies would not show anything. Statistically, 9 times out of 10 this cancer will not register on FNA biopsies which is what happened in 2019. I got the biopsy done on April 28th and was told I would find out in 3-5 business days.

May 2, 2023: It's Tuesday afternoon around 4:15pm and I am sitting at work when I see a text notification that my test results were posted on my patient portal. I start to begin to get really anxious but think "You are getting yourself worked up over nothing. Open it really fast and get it over with". I take a deep breath, click "view results" and the first thing I see:

Biopsy 1: Acinic Cell Carcinoma (original tumor site)

Biopsy 2: Metastatic Acinic Cell Carcinoma (lymph node) level 1 (area of enhancement)

Instantly, I jumped out of my chair, my heart began to pump like it was coming out of my chest, and my body felt like it was on fire. I had this feeling I don't think I've ever experienced before but I wanted to rip my clothes and skin off. I wanted to jump out of my body. I instantly felt trapped in my own body. I'm pacing the floor and felt like I couldn't breathe. My coworkers/friends ran over to the computer to verify if what I was reading was correct while another co-worker/friend was telling me to take a deep breath since I looked like I was about to pass out and was "sheet white".

Calling Matt while I was at work was also traumatizing. Hearing him cry on the other side of the line and telling me "Baby, please just come home". An all too familiar feeling of torture from the past. Watching someone else break because of you.

Looking back, I kind of feel embarrassed about my reaction while at work, even though, to get that news, I'm kind of glad I was at work (which is a hospital). Thankfully, my coworkers and friends are APRNs, RNs, and they looked at the results and tried to comfort me for a moment. They guided me on what to do next. "I'm curious why you are getting this news on a portal message and no one has called you. You need to call the on-call doctor now".

I called the on-call doctor twice within the hour and was told Dr. B would be calling me that night. He didn't... Matt and I went to our Tuesday night small group for some normalcy and it was nice to have my tribe lay their hands on me as they prayed for healing and a miracle.

That night, I tossed and turned all night. I was so tired and I wanted to sleep but every time I dozed off, I'd quickly wake up. I felt like it was a dream but then remember that this was real. I'm living the nightmare all over again. If the room was silent, then my brain would go to the darkest places; "death", "this is the end". So I had to have the TV on the entire night just to try and tune out the voices in my head.

May 3, 2023: Dr. B called and asked if I saw the portal message. I told him yes and he sincerely apologized. He said the doctors across the hospital have tried to fight it as the patient ends up finding out hours before the doctor is even aware of the results themselves, which is unfair to both parties. Matt sat next to me as we listened and asked him several questions.

Throughout the day, I was very emotional and cried at the drop of a hat, and often. Matt thought it would be best if we went for a walk outside to soak in nature, be with God, be with my kids (my dogs River & Milo), and talk about the future. Gosh, we get married in 6 weeks and I start an intense graduate program in 3 months. This news just threw a wrench in all of our plans. Isn't that just like life though?

May 4, 2023: We met with Dr. B again to go over any additional questions and just to show how great of a doctor he is, he brought me some peace by reminding me of the facts:

1) Right now, yes, it looks as though the tumor has regrown and is also in the lymph nodes. They are about 1 cm each and are growing slowly. We are hoping it's the low grade (which has a better prognosis than the high grade). The hope is that it has stayed contained to the neck. It's rare that a salivary gland cancer would go to other lymph nodes in the body. But it's more common to metastasize to organs. So we need to get a PET scan.

2) If heaven forbid, it has gone to other organs, they can treat it. He reminded me that I've had several scans done within the last 6 months to a year and they have all come back clear (brain, face, neck, chest, and abdomen). The upcoming PET scan should provide more peace of mind.

3) This will sound odd but try to follow: He reminded me that "this isn't happening TO me". I haven't done anything wrong, this isn't God punishing me for something. That it is more than likely the cells were never fully taken out the first two times. Since we aren't at a place to see microscopic cells while a patient is open on the operating table, that's, unfortunately, part of the risk. However, this time around, we will need to be more aggressive in treatment if we want a better outcome.

Dr. B is leaving at the end of May to begin his new role at a different hospital so he turned me over to his colleague and mentor, Dr. K. I met with Dr. K on May 11th, and here is the current plan/comments made:

1) While this cancer is very rare, he actually sees and follows patients with my exact diagnosis. Whereas my other surgeons (Dr. McEwan, we love her and miss her, and Dr. W) never had experience with this cancer. It was very apparent to me while seeing Dr. W that she had no knowledge and hadn't done much research herself since I seemed to know way more than her on characteristics, research that had been done, etc. Anyways, Dr. K shed some light on his other patients who also have ACC, where they are now and he feels optimistic about my current status. Amen! I cried when he told me this because, for the first time, I felt like someone understood my situation and saw me.

2) Since this is my 3rd surgery, there is obviously scar tissue. They cannot tell the difference between scar tissue and cancer. So if it looks like cancer, they will take it out and that will mean sacrificing facial nerves. We are hoping the eye nerve has never been touched and that it won't be affected but they won't know until they are operating. But the mouth for sure will be affected so I won't be able to smile on the left side.

3) Since they are 90% sure there will be facial paralysis, I will also be followed by Dr. JL, a facial nerve specialist. He will be part of my operation and will follow me after surgery and treatment for additional rehab/surgeries for "reanimation" of the face. I may even get some Botox! All of my aging ladies, let's say "amen". (Laughing) I realize some of you will not think this is funny but there's nothing really funny about cancer so you HAVE to look for some of the perks. Insurance-covered Botox may be one of them. I meet with Dr. JL the week of May 15th.

4) Now that the cancer is in my lymph nodes, we have to be more aggressive in treatment. 4 to 6 weeks after surgery, I will begin some type of radiation treatment. (this cancer is chemo-resistant). Traditional radiation can only be done once in a lifetime for this type of cancer so we are all hoping I am a candidate for proton therapy. It's less aggressive than traditional radiation, kills fewer healthy tissues, and can be done for multiple rounds. It's way more targeted and they don't just blast an area so it won't kill all tissues in its path. I meet with Dr. CL, a radiation oncologist, the week of May 15th for more information.

5) My pet scan is scheduled for the week of May 22nd.

6) Surgery is scheduled for the first week of July.

7) Dr. K is very optimistic and told me to enjoy my wedding and try not to think about any of this and just enjoy the day. He said we just have to do it right this time around.

Matt and I have also started a cancer-fighting diet regime, trying to stay well-hydrated, getting lots of exercise, and last but most importantly, time with God as he will be the one who continues to bring us peace, and healing, and provide us strength to fight.

We will continue to update as things progress. Please pray with and for all of us. For my family and friends and my tribe. Cancer doesn't just affect the person, it affects everyone. Even pray for my coworkers since ill be missing a lot of work. Pray for my family, friends, and tribe for the emotional/spiritual toll it will have on them. We all need prayer. Love you all and thank you for the outpouring of support, love, and messages.