Health Update (or lack thereof)

Since there are so many people who have asked, I’ve decided to put this all in one place.

First, let’s review 2019’s timeline:

30 Jan – first biopsy completed; oral surgeon tells me he doesn’t need biopsy to tell me that I have cancer.

6 Feb – oral surgeon calls me to confirm moderately differentiated squamous cell carcinoma. Refers me to Huntsman Cancer Institute at the University of Utah in Salt Lake City.

12 Feb – first visit with my surgeon and his team. My friend BJ went to this consultation with me and asked the questions that I needed to ask (but was too much in shock to think to ask). Treatment plan suggested, surgery scheduled.

7 Mar – surgery to remove two tumors (one on the right side of my tongue and a much bigger one in a lymph node on the right side of my neck), free flap reconstruction of the soft tissue in my mouth, partial neck dissection and submandibular gland resection.

14 Mar – discharged from hospital

9 Apr – start of radiation treatments

23 May – final radiation treatment

26 Jun – first follow up appointment, all looked good. Recovering from radiation at a normal rate (although I was really tired of the side effects). Referred for normal post-treatment schedule of follow-ups, testing, imaging, etc.

10 Sep – first round of post-treatment imaging. CT scans showed a dark spot in my neck. Radiology said it was fluid built up since the removal of lymph nodes and vessels. Surgeon concerned it was actually an area prime for disease recurrence. Surgeon ordered next round of imaging to be moved up by 1 month. (Normal results would have meant the next imaging in 3 months. My imaging was ordered for 2 months.) Thus began 60 days of worrying, increasing swelling in my neck and slowly decreasing ability to swallow solid food or speak well.

—and now we come to—

12 Nov – new CT images taken. ‘Dark spot’ has now increased in size a great deal. Surgeon and my care team convened in clinic room. Since Huntsman is a teaching hospital, I’m never alone with my surgeon. Today we had the surgeon, one of his current med students, a PA who was taking notes for everyone, a member of the nutrition/speech pathology office, my clinic nurse (Nurse Anne, my favorite), and my case/social worker.

First thing we discussed was the swelling/redness in my neck and my decreasing voice. The PA was dismissed to go retrieve a camera. (For those of you that heard about or saw my feeding tube while in the hospital, THAT experience was very foreshadowing.) The camera was fed up my nose and down my throat to get a view inside my throat and neck. It was broadcast on the big TV on the wall of my exam room. Totally gross. Also not very helpful. Yes, we could see swelling, but the tissue was colored appropriately and didn’t show any lesions. At least I didn’t gag on this like I gagged all the time on my feeding tube. With great cheering, the camera was removed.

After the surgeon showed me (and the whole team) all of the details in my images, he ordered needle biopsies (Fine Needle Aspirations) to be completed 15 minutes later. The pathologist and med student brought in a cart loaded with supplies and microscopes. A few minutes of sticking needles in my neck and the pathologist was happy with the samples she got. Unfortunately, these samples didn’t show anything obvious either. Cool bit – I got to look through the microscope and see what my red blood cells looked like. There were cells that showed sign of inflammation/infection (no obvious source of the infection either, no open wounds, etc.), but the pathologist said the preliminary review showed no cancer cells.

So, yet another round of testing with no conclusive obvious results. My surgeon is very cautious and worried about the growing black spot. He put me on antibiotics, in the hopes of dealing with any possible infection. PET scan ordered for next week with the hopes of understanding the tissue at the back of the black spot that might be a recurrence of disease. Additionally, I was told to prepare myself mentally for more surgery. After the PET scan, if he thinks surgery is needed, it will happen quickly.

Then the speech/nutrition team told me I needed to gain 3-5 pounds before my next surgery. Yeah, that’s going to be super easy. I’ve lost 40 pounds this year because I can’t eat without becoming thoroughly exhausted. But yeah, I’ll try. (My nurse practitioner Marie said it probably won’t happen. ha.)

After the appointment, I sat with Nurse Anne and Brooke (the social worker) for a while and talked about how I was feeling. These two women have been so helpful and supportive over the last 10 months. They both deserve a raise.

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So how am I feeling?

Pretty much everything you would expect:

I’m tired of the headaches and pain in my neck.

I’m tired of being tired.

I want to be able to speak normally and with a decent volume. But that just won’t ever happen again. I need to get over myself.

I’m frustrated with having no real answers. Am I healthy? Obviously not, but who the hell knows? Should I sit around and cry about it? Maybe a little bit.

My friend BJ and I talked about how it’s ok to be down about the health trials we are both facing. I’m glad someone understands that. But Brooke congratulated me for facing this crap on my own, working through a lot by myself. She said that resiliency was rare and my strength was to be admired.

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Like I said earlier, Brooke deserves a raise.