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.
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.
/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.
A new mess for a new day.
When most people think of implants, they thing of boobs, they don’t think of teeth.
HOWEVER.
On Friday, the 26th, I was told in no uncertain terms that my mouth cannot hold a lower denture. In fact, most people can’t. It’s a small space, it erodes the soft tissue and leads to the destruction of the jawbone.
In radiated people, me, this is called OSTEORADIONECROSIS. Bone death due to radiation.
The only solution? Implants.
It’s a long and scary process and what it entails is this:
1) EXTRACTION: They’ll remove the teeth I have now.
2) HEALING: Because of the radiation, healing will take about 4-5 months, but the hyperbarics I did is going to help a LOT. We already knew this and going toothless for five months was never going to be a joy (in fact, it caused me lots of tears), but okay. It was going to be a great diet and whoo hoo! Right? Sure.
3) THE PLAN: They’ll build a 3-D impression and scale of my mouth and take a peek at what I have going on in there to see how I can have my teeth made for after. He’s fairly certain I can hold an upper denture plate. I have a ‘nice curvature of the palate’. Score.
4) IMPLANTATION: Sounds scary, right? It is. They cut open your gum line down to your jaw and stick in a plate with five titanium posts attached. It looks like this, more or less:
Healing time from that? 5-6 months. Yeah, a no-chew, no bite diet for almost a year. I went from 4 months to 9 months (on a generous estimate) real quick, folks.
5) Once that’s done, they make the ‘crowns’ that sit on those screws and THEY look like this:
Yes, I can technically wear an upper plate during those six months I’m healing but it won’t be comfortable because I’d have teeth rubbing against open sores and I still can’t use them to chew. It’d be kind of useless.
When it’s all said and done, uppers and lowers look like this:
COST: $30,000
Approx: $2500 for the upper plate, $12,500 for the posts themselves and 12,500 for the surgery & crowns. Not to mention incidentals like oh, anesthesia.
SOOOO, this is where things stand now.
A new mess for a new day. Here we go.
UPDATE!
Things have been going well - or as well as can be. Here is the major update:
HYPERBARICS: Last Friday, at 3:49pm, I finished my last hyperbaric treatment, at least until after I have my teeth pulled. It went quickly and was quiet - only four people inside. I had a new book to read, which is actually more important that you might realize. After thirty-eight hours of just sitting there and twiddling my thumbs, I can say that I’ve read six different books and read endless numbers of magazines. I feel accomplished in my summer reading.
TEETH: I have an appointment on August 25th to have my teeth removed. ALL of them, yes. It’s a conscious sedation, which means that they make you extremely tired and very loopy, but you’re not asleep. My dentist (Dr. Chun), has put in with Harborview to see about getting into the OR there because she has concerns about the way I don’t handle anesthesia very well. It wears off extremely fast and she doesn’t want that to happen since, under a conscious sedation, you can still feel pain. A lot. It happened before when I had six teeth pulled before my radiation. That consult should happen next week, but it shouldn’t affect my appointment on the 25th, at least not yet.
FUNDRAISING: As of this moment, we’re at $5500 and that’s amazing. SO amazing. Thank you so much for all of your donations - I can’t tell you what that means to me, I really can’t. I appreciate every single dollar.
RANDOMLY: I found a photo from after my second surgery, one I don’t remember having been taken, really. It’s not pretty, but it illustrates how they went after my parotid gland - the largest of the salivary glands. It housed a tumor and it sits just in front of your ear, kind of in your cheek. The scar goes up behind my ear and then even in front. The scar down the side of my neck was a “redo” from the original surgery I had done to remove my lymph nodes on that side of my neck. The zigzag pattern supposedly makes for a cleaner scar.
This interview was filmed last weekend, and I hope that you’ll take a moment to watch it as it explains a little bit about the hyperbaric process and why I need to do this for my health and well-being.
Thank you!
There are no words except “thank you”…
I feel so overwhelmed with the generous donations that my fundraising page has received so far. As it stands at noon on the 8th of July, I’m 25% of the way to my goal.
In other words, I can afford to have the sedation done to extract my teeth.
This is absolutely incredible to me and I cannot express my thanks without breaking down and crying and I want you all to know how much it means to me that you’ve shown your support so openly.
Thank you, from the bottom of my heart. Thank you.
Hey Everyone!
Most of you know by now that I am embarking on a new leg of my post-cancer journey via a campaign I like to call “Mary’s New Teeth”. Unfortunately, this leg of the journey is expensive. But the outcome will change my life in ways I hope will enrich it and allow me to get back to defining my new normal.
With the help of a few friends, we are attacking the issue of funding this little adventure in a variety of ways… and this is one of them. In order to get this site off the ground, I need a couple of small donations to get things started, so to speak. Would you consider donating even a few dollars via this site to help me get the ball rolling?
All of you have been there for me in so many ways…. I can’t begin to thank you for your support and love. I hate to be asking for help - this is not something that comes easily for me. But I hope you will consider helping me as I move forward with this process.
Thank you so much for your consideration. Whether you can donate or not, your support means more to me than you will ever know.
- Mary
And the hits just keep on coming…
I’m not one to sit around and feel sorry for myself when things go wrong. When I was diagnosed with cancer I went with the, “I can’t change it, how can I fix it?” school of thought. I had cancer, what did I need to do to make it go away? Because this ISN’T fair. I didn’t smoke or drink or do anything for TONGUE cancer. This is total crap. Yeah, I said it. CRAP.
Surgery? Done. Chemo? Sure. Radiation? You bet.
I had a very “bring it on” and “come at me, bro” attitude about all of it. I have a younger sister, a fourteen year old son (who was not quite thirteen at the time) and a three year old nephew. My mom died of ovarian cancer in December of 2006 and my dad, who has always been absent-ish, lives in Mexico, near Cancun. My marriage fell apart after the death of my daughter in 1998 and, so really, it’s just my tiny family: Me, my sister, Cheryl, my son and my nephew. I rely heavily on my friends to be there for me and they have been, without fail. Always.
I’d seen the way chemo affected my mom and I was expecting it to do the same to me. It didn’t. The radiation, however, knocked me flat.
I was so sick. I lost sixty-five pounds in five weeks. I was hospitalized for fluids three separate times. Going every day for six weeks for radiation almost killed me, and that’s not an exaggeration. The result is that I have no salivary glands and those are what keep your mouth clean. Without them, your teeth rot, no matter how well you brush and floss.
Before I even started the radiation, I had to see a dentist. They wanted to make sure that I had all the dental work I could before I started radiation because after, my mouth just wouldn’t heal if something went wrong.
(I should add here that I had my first cavity at 22.)
So, they did a bunch of x-rays and my mouth wouldn’t really open because of the surgery I had and it was awful. Then they removed six teeth (two molars in the upper back and all four wisdom). They told me that I needed to come back in October 2010 to discuss how to proceed after that since I’d likely need dentures.
I never went back. Mostly because of fear because, what? DENTURES? I’m way too young for this and they HAD to be kidding.
… I broke a tooth on Thursday. I saw my dentist today. They weren’t kidding. In essence, there’s nothing left there. I have teeth, but… nothing is holding them there.
The plan is this:
Dr. Chun is sending Virgina Mason my information. Virgina Mason has the hyberbaric chamber needed to pump oxygen through my body so that my mouth will heal after they extract ALL my teeth. I have to do 20 “dives” in the tank before they’ll even do the three hour surgery. After all my teeth have been removed, I have to do another ten to fifteen dives. From their site:
A typical series of hyperbaric oxygen for a problem wound or tissue injury from radiation may require five visits to six visits a week, for four weeks to five weeks.
THIS is the chamber: Multiplace Hyperbaric Chamber
Then I have to remain toothless for three months to allow my body to heal. THEN they’ll fit dentures. Because of the way my new tongue fits in my mouth, which is TIGHT, she’s not even sure how well a bottom ‘arch’, or plate, would fit.
The hyperbaric chamber treatments are covered by insurance, the extractions are covered by insurance… but the sedation and dentures themselves? ARE NOT. They will cost about $4800. In other words, I’m going to be a toothless hobo.
This was my day.
AAAAAAAAND now I’m feeling sorry for myself. Truly, deeply sorry for myself.
