SURGERY? DONE. So done.

SO! Guess who finally had her surgery done? This gal.

I KNOW, RIGHT? Finally. After all the waiting, and the fighting, and the WAITING… it’s done. January 28th, my friend Jen took me to Harborview in Seattle, my sister in tow.

We got there, checked in and they took us back. I put on a gown, pulled out Bumblebee (because he’s my guardian and has been to every surgery I’ve had since the beginning) and then I closed my eyes for a minute:

image


As an awkward moment, my son had an emergency at school and had to go to the ER, so Jen and Cher had to leave and my best friend Lani came to take me home and get me settled. PS: The boy is fine.

The very next day, I was at Virginia Mason to start hyperbaric treatments. It’s a way of breathing pure oxygen at a pressurized ‘depth’ so that it increases your healing. It was my third round of dives, so I’m a pro.

image

image

(It holds up to 24 people, but we do like, 10 max)

And the people that work there are AMAZING. Every last one of them are super sweet, always willing to help with anxiety problems inside the chamber or, in my case, with my skin graft problems outside the chamber when I couldn’t quite get ahold of my doctor.

image


Just seriously amazing people.

They even took care of my sister on the day she took me because she was tired and wanted to take a nap. So, they gave her a recliner, a pillow and a blanket.

image



After you finish your dives, you get to ring the bell and graduate! YAY.

image


Then I went for my follow up and got to see the x-rays for my implants. Apparently, they’re perfect; the outside two are leaned back just a little so that the implants can be maximized or something. Hey, they’re the experts.

image


Next up, I’m going to call the awesometastic prosthodontist who is helping me. This guy is phenomenal you guys. I don’t know how to explain it, but he is. ♥

I’ve been so lucky, so blessed, with the people I’ve met and the people I know.

Really, all that stands between me and teeth now is the money and fundraising. That site is here.

And tonight? I had a milkshake for dinner. Go me!

SURGERY?! APPROVED!

YOU GUYS.

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.

Love, Mary

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.

Last Tuesday (Aug. 14), I had a meeting with my dentist at Harborview. She looked in my mouth and, despite having bone spicules showing, she said I was doing well. She said that she’d clip them down if they were really bothering me, but that wasn’t a good time last time, so I decided against it.Then she asked if Dr. R from the UW had talked to me about the cost of all the reconstructive surgeries I need to have done. I launched into the whole, “Well, he said about 35 thousand dollars—” And she cut me off to say, “Well, it’ll be about that much on my end, too.”And I said, “Wait, no. He said that much total.”She went on to explain that he didn’t have the authority to estimate her costs and that with the posts, the surgery, her costs, the anesthesia, the OR time, etc., that there was no way it was going to cost 15k total. When she put it like that, it made more sense and I had to admit that I felt kind of silly for thinking I’d get off for only 35k. Which, when you think about it, it’s awful to think that ‘getting off easy’ is “ONLY” 35k.Dr. D said she’d have the financial services office call me with a full estimate and they did that today.$43,426.06. Could be more, though, he said, depending. UGH. But, about that. I just… yeah. That cost, plus the cost of the dentures/crowns/bridges (another 15k/20k)? It’s going to be between 60k-65k.Basically, I’m back to begging:INDIEGOGO fundraiser is here.GIVEFORWARD fundraiser is here.Please pass them along. Please tell everyone you know. Put them on twitter, tumblr, facebook, plurk, wherever. I’d really, really appreciate it. Thank you for your time.

Last Tuesday (Aug. 14), I had a meeting with my dentist at Harborview. She looked in my mouth and, despite having bone spicules showing, she said I was doing well. She said that she’d clip them down if they were really bothering me, but that wasn’t a good time last time, so I decided against it.

Then she asked if Dr. R from the UW had talked to me about the cost of all the reconstructive surgeries I need to have done. I launched into the whole, “Well, he said about 35 thousand dollars—” And she cut me off to say, “Well, it’ll be about that much on my end, too.”

And I said, “Wait, no. He said that much total.”

She went on to explain that he didn’t have the authority to estimate her costs and that with the posts, the surgery, her costs, the anesthesia, the OR time, etc., that there was no way it was going to cost 15k total. When she put it like that, it made more sense and I had to admit that I felt kind of silly for thinking I’d get off for only 35k.

Which, when you think about it, it’s awful to think that ‘getting off easy’ is “ONLY” 35k.

Dr. D said she’d have the financial services office call me with a full estimate and they did that today.

$43,426.06.

Could be more, though, he said, depending. UGH. But, about that. I just… yeah. That cost, plus the cost of the dentures/crowns/bridges (another 15k/20k)? It’s going to be between 60k-65k.

Basically, I’m back to begging:

INDIEGOGO fundraiser is here.
GIVEFORWARD fundraiser is here.

Please pass them along. Please tell everyone you know. Put them on twitter, tumblr, facebook, plurk, wherever. I’d really, really appreciate it.

Thank you for your time.

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.

WHAT HAPPENED:

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.

- MaryMo

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.


SURGERY!


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.


HYPERBARICS!


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.

Secondly, pathology.

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.


SURGERY DATE: April 6th (FRIDAY)
Complete extraction of my teeth, plus they’re going to fix my face so that all the edema that’s been haunting me since my original surgery will no longer be an issue.
I’ll be toothless for almost a year, and I’ll be following a no-chew diet.
Even if you can’t donate (especially if you can’t donate) PLEASE REBLOG. A dollar is a more than I had before:
Fundraising page is [HERE].
[Shamelessly tagging all the things]

SURGERY DATE: April 6th (FRIDAY)

Complete extraction of my teeth, plus they’re going to fix my face so that all the edema that’s been haunting me since my original surgery will no longer be an issue.

I’ll be toothless for almost a year, and I’ll be following a no-chew diet.

Even if you can’t donate (especially if you can’t donate) PLEASE REBLOG. A dollar is a more than I had before:

Fundraising page is [HERE].


[Shamelessly tagging all the things]

UPDATE! Surgery approved!

I guess she didn’t like the idea of me coming down to sit in her office very much.

BUT! You’ve all read my Cancer Story. You’ve seen the photos, you’ve read about the chemo and the radiation and seen me talk about how my teeth have been getting steadily worse.

You saw me get excited last August when I was told there was a plan for dentures (which included spending my summer in a hyperbaric chamber) and then get crushed when I was told they weren’t possible. You saw in October when I was told about a new and better plan and then you’ve seen me wait and wait and WAIT.

Today? My surgery was approved. :D New teeth ahoy.

Well, first, the old ones have to come out. Then the whole year of waiting thing, but whatever. I can do this. The whole ‘losing half a tongue’ bit was the hardest part, right? *crosses fingers*

Please pass along my fundraiser?  The link is here at GiveForward. I still have to raise about THIRTY THOUSAND DOLLARS, which is more than most people pay for a new car, I know. Just for teeth that a lot of people take for granted.

——

I’m shamelessly tagging and including the fandoms I’m a part of in hopes that THEY will pass it along, too. Tell everyone you know, even if you cannot donate yourself. Every dollar is a dollar I didn’t have before.

Thank you so much for your support.

My Rage:As you’re all well aware,  I’ve had a back-and-forth going with the dentist, her assistant &  insurance going since like, October, when a new course of action was  decided regarding my teeth. Today, I was shown a letter that says this:On  December 15, 2011, (MY DOCTOR) requested authorization for:  NON-EMERGENCY DENTAL TREATMENT IN AN OUTPATIENT HOSPITAL SETTING but we  needed to know more about your medical condition to make a decision  about the request. Your healthcare provider was sent a request for more  information and did not respond within the required timeline, so this  request is denied (see WAC 388-501-0165). … DENIED.Because my DENTIST’S ASSISTANT DID NOT MOVE HER FUCKING ASS./breathesOkay.  I’m okay. I’m really okay now. I mean, I called her. And when she  interrupted me, I told her to shut up because I was talking and then I  told her that I was tired of being at the bottom of her list and that  she’d clearly been doing nothing for eight and a half hours every day  and that someone had been lying to me somewhere and I was going to sit  in her office (likely with a documentary crew because I know people)  until she did something and that I’d see her first thing Monday, but… No, I’m okay now.She swears she’s  sent in that authorization and that Sabrina at the insurance office  says it got processed wrong, but we’ll see. I told her I wanted copies  of what she sent and when and she said she mailed it to me. And BOY HOWDY did she sound hacked off that I called her a liarpants but you know what?I  also told her that when I can’t advocate for myself, I need someone  like her and in her position to do it for me. Because that’s HER job. That’s what SHE does.  They don’t talk to clients, they talk to providers. And when she said  that she’d had cancer, too? I thought, “Then you of all people should KNOW what this is like… right?”My anger-fury-rage was off the charts today. And this is why I’ve been in a holding pattern since OCTOBER.

My Rage:

As you’re all well aware, I’ve had a back-and-forth going with the dentist, her assistant & insurance going since like, October, when a new course of action was decided regarding my teeth. Today, I was shown a letter that says this:

On December 15, 2011, (MY DOCTOR) requested authorization for: NON-EMERGENCY DENTAL TREATMENT IN AN OUTPATIENT HOSPITAL SETTING but we needed to know more about your medical condition to make a decision about the request. Your healthcare provider was sent a request for more information and did not respond within the required timeline, so this request is denied (see WAC 388-501-0165).

… DENIED.

Because my DENTIST’S ASSISTANT DID NOT MOVE HER FUCKING ASS.

/breathes

Okay. I’m okay. I’m really okay now. I mean, I called her. And when she interrupted me, I told her to shut up because I was talking and then I told her that I was tired of being at the bottom of her list and that she’d clearly been doing nothing for eight and a half hours every day and that someone had been lying to me somewhere and I was going to sit in her office (likely with a documentary crew because I know people) until she did something and that I’d see her first thing Monday, but…

No, I’m okay now.

She swears she’s sent in that authorization and that Sabrina at the insurance office says it got processed wrong, but we’ll see. I told her I wanted copies of what she sent and when and she said she mailed it to me. And BOY HOWDY did she sound hacked off that I called her a liarpants but you know what?

I also told her that when I can’t advocate for myself, I need someone like her and in her position to do it for me. Because that’s HER job. That’s what SHE does. They don’t talk to clients, they talk to providers. And when she said that she’d had cancer, too? I thought, “Then you of all people should KNOW what this is like… right?”

My anger-fury-rage was off the charts today. And this is why I’ve been in a holding pattern since OCTOBER.

PROJECT NEW TEETH

… is HERE.

Every dollar is a dollar more than I didn’t have before. If you cannot donate, please reblog.

Thank you so much, Tumblrpeeps. You mean the world to me!