Today, I got a phone call from Shaina at Harborview Medical Center and she informed me she’d gotten a letter from DSHS approving the 45k surgery that was needed to put the posts in my jaw.
That lowers the goal SIGNIFICANTLY (to 20k) and totally made. my. day. :D I’m super excited. Dr. Dillon’s schedule is full until the end of the year, but in January? POSTS FOR MARY! And now that the goal is a third of what it used to be, I’m back to having hope for teeth.
Thank you all so much for your help.
PS: Jo @ Head-Nurse wrote a FANTASTIC blog post about this and if you could all go read it? I’d love you forever.
PPS: My fundraising page is HERE. Please pass it along? Every dollar is a dollar I didn’t have before and every little bit helps. :D THANK YOU.
Surgery #2 Update
Doing things a little backwards since I already updated about my tattoo and didn’t update about my surgery on the 20th.
On the 3rd of April when I had my pre-op appointment for having my teeth out, they found a tumor under my tongue. Small, about 1cm in size. Considering my first tumor was 3.5cm in size, this was very tiny. Not non-existent (which I’d prefer, tbh), but small.
My oto surgery (Dr. F) decided on the 18th that it had to come out RIGHT NOW. So, I had surgery on the 20th.
I asked him flat out if my cancer was back and he didn’t say. What he said was that it was a ‘blip in my treatment’ and that we were going to get rid of it and go back to three month meets since the cells were abnormal.
As the pathology showed abnormal cells from before and two out of three pathologists agreed that it was likely my cancer returning, I wasn’t about to argue.
The lump in my neck didn’t show on a scan, so THAT was a good thing.
However, because they carved open my tongue again, I’m back to not doing a lot of talking (which I’m SURE my family is grateful for - no more yelling by mom! YAY!) and I’m back to eating yogurt and drinking soup if I can.
Also, I’ve lost about 15 pounds total in the two and a half weeks since my first surgery. It’s leveling out, though, so that’s a good thing. I won’t be supermodel skinny like they were afraid of, but I’m losing weight after all.
Not the BEST diet I’ve been on, let’s face it, but sometimes eating just isn’t worth the effort of pulling out the blender, the food processor, etc.
So, that’s your update for now. :) Love you all.
Another lil update re: pathology stuffs
Saw my ENT today. HE looked over my pathology reports, peered into my mouth, then felt around, too. Apparently, the tumor is just a little smaller than a dime. He says it’s nothing like what I had going on before but, like all bad little things, it’s not allowed to nest in my mouth.
SO? Surgery scheduled for Friday.
It should take an hour or so. I’ll go home the same day. He doesn’t think I’ll need to do hyperbarics. He’ll put me to sleep, he’ll cut it out, he’ll sew me up and ta-da.
“This is a blip in your treatment. We’ll take it out and go back to watching very carefully.” - Dr. F on the new situation.
Frankly? I’m a little tired of all of this bullshit. ARGHasasgklahskjdhgka.
Surgery complete! Hyperbarics complete! Prognosis… incomplete.
To make this a bit more coherent, I have to go back to the week and a half before my surgery. One of the downfalls to having had the surgery I had before is that my neck is constantly tight; it always feels like I slept wrong. The upside to having a teenager? I can ask him to rub my neck when it gets to be a little too much for me.
On the 20th of March, he said he felt a lump on the left side of my neck. It freaked me out, so I called my oncologist. Dr. K was very nice about moving my appointment from April 4th to the 26th of March. He felt around in my neck and said that he just wasn’t convinced that it was anything to be worried about. I felt better.
On April 3rd, I went in for my pre-op appointment with Dr. D. She’s the dentist who performed my extraction. She came in and felt around my neck (they call it palpating) and felt the lump. She frowned a little, then got in my mouth with her hands. And when I say ‘got in my mouth’, I mean that they stick their whole hands up in there. It’s seriously uncomfortable.
As an interjection, my original tumor was on my tongue on the right side of my mouth. It was 3.5cm long when it was all said and done and so, half my tongue was removed. The lump on the right side of my neck was large and so they took out the lymph tissue in my neck as a result.
On this day, Dr. D found a spot under my tongue on the left side. She kind of scraped at it to make sure that it wasn’t covering something worse and there was what they call an ulcerated spot. It was small, about 1cm. She was concerned, so she said she’d biopsy it when she did my surgery. I was completely down for that since, hey, it was beginning to sound a lot like my original problem, just on the left side.
I had scans done right away and they showed nothing major. I was feeling so on the fence that it was ridiculous. No need to worry until after pathology, though. I didn’t tell anyone except my sister and my best friend because I didn’t want anyone ELSE to worry.
I took my sister and Nikki with me to Harborview on Friday morning and I was totally surprised that they let them both back there with me, but they did. And I brought Bumblebee to be my guardian (get it?) like I do every surgery. I started to panic right before they took me back, but they doped me up super good and… that was that.
Dr M (the reconstruction surgeon) was there to work on my face & neck from my original surgery, so he looked at the lump in my neck, but couldn’t reach it from opening the original scars in my neck. Because the scans hadn’t shown anything major, it’s still there. He did liposuction to fix the edema from my original surgery and redo my scar - the one that goes from ear to ear and makes me look like a Sweeney Todd survivor.
Dr D (the dentist) worked on my teeth. My lower right jaw was the worst and they had to carve part of my jawbone down when they took out those teeth because when they broke off as they were taking them out, the roots were very stiff. They didn’t want to risk breaking my jaw entirely - since that would then require grafting bone from my thigh to fix and practically a lifetime in the hyperbaric chamber (NO. THANK. YOU.). So, a two and a half hour surgery took almost six.
I got there at six in the morning and I got home around ten. I was drugged off my ass and actually not in too much pain. Bright and early the next morning, I was on the road to Virginia Mason for my first hyperbaric dive.
At VM, you can walk right to the hyperbaric place and the first thing you do is change into a pair of scrubs and booties for your feet, over your socks. No shoes. No street clothes.
You’re not allowed to take/wear anything into the chamber that’s even remotely flammable. Everything has to be cotton or you have to take it off. No electronics allowed. No fuzzy toys. Nothing but books/magazines or a journal to write in. No newspaper because that’s super flammable. Basically, you can read or sleep for two hours. That’s it.
Yes, it’s as boring as it sounds.
So, I got there, I got changed, I got my blood pressure done and I got into the chamber. My hood from before had been modified slightly since I couldn’t wear the tight seal around my neck since I’d had my neck cut open and sewn back shut. So, they had a shoulder one that they then wrapped in blankets. It got kind of uncomfortable when they pressurized the chamber because OMG. 90 degrees plus being wrapped in blankets? Uncool.
Then I slept. I’d brought a journal, but I was way too out of it to even function as a person for two days. I mean, 24 hours earlier, I’d been in major surgery. So, ugh.
The rest of the week went better. I didn’t go Sunday, but I did a single dive on Monday, then double dipped the rest of the week. A dive at 8:30 in the morning (surfacing at 10:45am) and then another at 1:30pm (surfacing at 3:45) and then I went home. It was a long week.
Virginia Mason’s cafeteria is super awesome — they found potato soup in the back for me and I ate that for most of the week. By Thursday, I was iffy and I didn’t bother on Friday. Food is boring when you can’t chew. Trust me.
On Friday, I rang the bell like a good little graduate. :) I’d made a couple friends (it’s so funny how you can bond over a few days of chatting people up, but let me tell you…) and so I got my hugs and went on my way.
MONDAY: FOLLOW UPS AND PATHOLOGY REPORTS
Today, I went to my follow up with Dr. D, which led to a follow up with Dr. M… so, there was that.
First off, my teeth (or lack of them) are healing okay. No bone is showing as far as they can see, so the fear of osteoradionecrosis is fading for now, which is AWESOME. No broken jaw, no bone death? Fantastic. I’ll take that. That was going to be a serious obstacle to getting new teeth.
Okay. So, three different pathologists from three different places looked at the piece that she excised from under my tongue and all three of them gave inconclusive diagnoses. They just couldn’t say for sure. It COULD be cancer again, or it could just be something there that’s growing, but whatever it is DEFINITELY abnormal.
It doesn’t make me panic just yet, but it doesn’t make me feel good, either.
Drove straight from the dentist & reconstruction doctors to my oncologist (Dr. K) and gave him the pathology report. He called me two hours later to say that he felt okay about it since it didn’t say, “CANCER RED ALERT” right there, but to have my oto call him after my next appointment (see next).
I see Dr. F (my otolaryngologist/ENT) on Wednesday. Since he’s spent the most time in my mouth, I’m going to ask him straight out if he thinks my cancer’s back. It’s not that I don’t trust my oncologist, but he’s said straight out that head/neck cancers aren’t his big thing and he has to defer to people like dentists and ENTs. Which, hey. No big deal. He takes care of my broad care.
Dr. D said that if I were her cancer patient, she’d go back in and take out that local piece of whatever was left and she’s pretty sure that’s what Dr. F will want to do, too, given how aggressive my cancer was the first time (my tumor grew to stage 3 in six months).
Dr. D also said that I need to go back to seeing him every three months and not six. Which… yes. Absolutely.
SO. Total info dump post, but a lot has happened in the last couple of weeks. And that’s where we stand now. Waiting for four/five months for my mouth to heal before posts can even be considered.
Raising money, always. The page to donate is HERE. Please think about donating or sharing the page with other people. Thank you for reading, caring… all of it.