I never thought I'd be back on this blog in this capacity, but I'm here.. so here we go!
Back on October 7th, I woke up and had this bump on my left jaw joint (or whatever it's called) in front of my ear, on my cheek. My jaw was SUPER tight and it hurt to open my mouth. This pain gradually wore off after 5-7 days, getting a little better every day. Of course I posted to the grand ol' Facebook about it, asking for advice. The general consensus was TMJ, but I thought it was weird for it to come on like that out of the blue when I've never had anything like it and I'm not.. young, haha. However, my life HAS been extremely stressful in the last year, sooo TMJ wouldn't really be that much of a surprise. Well, I let it sit and sit and just kind of tracked it. Having had cancer (and just being the way I am), I pay attention to weird things and I even took pictures to track it, ha. Anyway...
A month later, it was still there, I asked the internet professionals once again, and I caved and went to the doctor.
Family doctor first... "yep, that's not normal-looking, let's get an ultrasound of it." I was pregnant, so they couldn't do a CT like they wanted, so u/s would have to be good enough. When I went for the ultrasound, I took Ben and Madi because hello, they went everywhere with me and they've been with me for plenty of ultrasounds. The tech was extremely rude and told me I'd have to reschedule if they couldn't behave. I said a silent prayer and hoped they would be as good as they are when we go to other ultrasounds and appointments. They've been to A LOT of doctor appointments between my pregnancy and all of Madison's appointments, so I knew they could behave. And guess what? They did! The tech was SO shocked and I smiled a little, knowing my kids are awesome.
The result of the ultrasound was that there was a mass of some kind on my left parotid and we needed to do a needle aspiration biopsy to get a better understanding of what was going on. That was scheduled for two days later and let me tell you, it was SO much better than the needle aspiration biopsy I had on my neck seven years ago. It's such a weird feeling being jabbed with a needle when you're numbed up, and you can hear them gathering the cells (fluid) into the needles, but it was better than the neck! After the biopsy, I saw that the screen said the mass was on the left parotid (major salivary gland).
The report from the biopsy said, "There is an irregular hypoechoic solid nodule in the left particular soft tissues measuring 2.3x2.2x1.3cm. This nodule appears to be closely associated with the left parotid gland and may be intracapsular. Contrast enhanced CT imaging of the face is suggested for further characterization. Additional note is made of a small (6x4x3mm) adjacent lymph node, with a discrete fatty hilum. Impression: Solid, irregular left preauricular mass, likely intraparotid. CT imaging is suggested for further characterization." (Gregory Smith MD)
They sent this to my oncologist (who I've been seeing annually for several years since my HL in 2013), who said it does NOT look like Hodgkin's, but that we can't rule out some kind of cancer. Initially, I was scheduled to go see my oncologist, but they referred me over to an ENT since that's where they would send me next anyway.
I scheduled to see the recommended ENT (Dr. Seth Riddle), but I met with his NP first (Jinille, love her!) because he was out of town, and she took some pictures to send to Dr. Riddle and get his input. I went back the next week and basically, he came in and said it doesn't look good. He's very straightforward and I appreciate that. With my medical history, it's nice to be spoken to in a clear way. The cells came back as abnormal and we needed to continue to get a better picture here. He said we either needed to do a surgical biopsy or just surgery to remove it. (Some of the timeline at this point I may be mixed up on, but I went back to old texts with my mom to figure it out, haha.) We decided that an MRI would be the next step, but they needed to get approval from my midwives/OB in order to do so, since I was pregnant. In the meantime, we scheduled surgery for the day after Thanksgiving and basically just needed to gather more information in order to know exactly what kind of surgery we would be doing.
I got an MRI, which was extremely uncomfortable with my little human weight pressing on my belly, haha! I used my hypnobirthing techniques and affirmations to stay calm during the scan. It took about half an hour of lying still on my back on a hard table, but with Lauralyn's genius hypnobirthing methods, I kept it together. ;-) I felt off and sore for the rest of the day, but I kept it together and laid still.
From there, we got the results that it was a parotid tumor. They recommended removing the whole parotid gland to prevent tumors from growing back in the future. There are many different types of parotid tumors, so a second needle biopsy was used to determine whether or not it was malignant. They rushed results, but it still took a few days and carried over a weekend. (I think the MRI and second biopsy were actually done on the same day, but stay with me here...) Also, this biopsy was a little more uncomfortable and I kept an ice pack on my face most of the rest of the day. (This image is intended to show you the parotid glands, but my tumor did happen to be pretty close to that too.)
The ENT sent me to an endocrinologist (Dr. Konstantinos Segkos) for the second ultrasound and needle aspiration biopsy. I guess having it done by an endo, it was more accurate and specific? It WAS different than whoever did it the first time, and he did an ultrasound of my whole neck and thyroid so I was covered in goop... disgusting. (Side note: My thyroid is still doing well!) He said there were a couple spots in my parotid that looked like there might be smaller masses too. The nurse in his office said they've seen more parotid tumors recently... weird. One of the pathology tests they ran was to find out if it was or wasn't lymphoma.
Results from pathology said NO to lymphoma, but unfortunately yes to malignancy. Bummer. So the surgery would absolutely be necessary, but I had time to think about it and decided that I really wanted to wait until after the baby was born before having such an invasive surgery - if for no other reason than to have "real" pain meds while healing. My midwives agreed that this was a good idea and the ENT okayed it/agreed as well. During my pregnancy, I developed gestational diabetes (GD), so I was also seeing Maternal Fetal Medicine (MFM, high-risk baby docs) twice a week for non-stress tests (NST) at this point in my pregnancy. They said I could have surgery during pregnancy as long as I had a NST right before surgery, but they also agreed that waiting would be more ideal. Meanwhile, I ran out of insulin and my insurance was being complicated, so I went a week without it. My numbers stayed in a good range, which actually meant that my placenta was not working as well as it should have been. SO... that plus the tumor resulted in MFM recommending induction in the 37th week. Everyone was on board with this and my parotid gland/tumor removal surgery was scheduled for January 9th, three weeks after baby was born.
Jensen was born on December 16th, a healthy little 6lb 14oz stud muffin, and I spoke with my oncologists about having a PET scan done BEFORE surgery. This happened on December 31st. I forgot how much NOT fun those scans are. You have to fast for the test and arrive early and WARM, so I dressed in my favorite sweatpants and hoodie. :) They inject you with a radioactive sugar substance and then give you a nasty drink to drink, followed by a 45 min or hour "nap". You can't read, play on your phone, etc. etc. etc. and you need to be still because that solution will go to the cells that are most active - like cancer cells eating radioactive sugar. It's a gross diet soda drink and it's probably my least favorite part. Then you have a scan done that takes about half an hour or so. It's one where the machine will tell you not to breathe and then breathe... those aren't fun. Fun fact, though... the guy who ran my test and everything... SAME GUY AS LAST TIME when I had my PET scans AND his last name is Jensen... what are the odds??
Anyway, PET scan showed the glowing parotid tumor (my term is "glowing") and some lymph node activity. Surgery was set for January 9th, and I'll discuss that in the next post.
