Dental Woes and Whatnot

When I was four, I contracted bacterial meningitis. To save my life, I was given some powerful antibiotics that worked, but at the cost of destroying my enamel. This resulted in yellowing teeth and getting cavities and abscesses at the drop of a hat. Not to put too fine a point on it, my teeth look like a meth user's, so my mother and I have been looking into dental implants. I've been appointment-hopping, getting consults, and it turns out I currently have an abscessed molar that needs to be taken care of before I can even begin thinking about consults for implants. Fortunately, it doesn't hurt, probably because there's nothing opposite of it to aggravate it. The molar on the top got abscessed a while before my cancer diagnosis, and that's when I got a few fun facts about me confirmed.

1) My veins are shite. It took seven tries to get an IV working, and all the other attempts resulted in my veins blowing out. As a result, I spent the next couple weeks looking like I'd been battered.

2) Locals do absolutely nothing for me. After they tried - and failed - to get an IV line going for IV sedation, they switched to locals to see if anything would work. I've not had good experience with getting locals to work, and this time was no exception. The first one did work, for all of 10 minutes. The second one just made my face numb, and had the fun perk of worsening the toothache pain to the top of the pain scale. (This crisis was ultimately resolved by admitting me into the hospital and someone there was finally able to get an IV going on me, and I was put under general anesthesia for the extraction)

This means any major dental work done on me has to be done by a place that 1) does adult IV sedation and 2) accepts Medicaid. There's a grand total of one place that fits that bill, the University of Nebraska Medical Center in Omaha. I have an appointment for a tooth extraction on the 12th of September, a few weeks before the wedding. And Jen has to drive me home since they're doing IV sedation, and she loathes driving in Omaha, especially in unfamiliar areas. This is going to be exciting.

Also, this is a teaching hospital. I think that's why the medical team was so ridculously excited to learn that I had a medical port to use instead of getting an IV in my arm. I'm sure a lot of that is because it's easier, but I'm not so sure there wasn't an element of "SHINY TECHNOLOGY!" going on there too. Most people coming in for dental work aren't going to have that.

I'm just glad that this tooth hasn't started hurting and even more that it didn't start hurting during chemo, which is hard on the teeth too. It would have been harder to get dental work done while undergoing chemo. There are false teeth of near-denture quality that can be used to give a cosmetic appearance of having nice teeth at a fraction of the cost of dentures, so I'm going to try that out for the wedding pics. You can't eat with them on, and I'm not sure how comfortable they'd be overall, but I've seen good reviews. There's a reason I smile with my mouth closed in pictures. I laugh too much to be able to remember to keep my mouth closed, which is why my mom's helping me get implants, or if I'm not a good candidate, proper dentures. It would be nice to be done with this tooth business.

In the meantime, I have other things in the works. YSC will be featuring me in an article they're going to publish on October 13, the National Breast Cancer Awareness Day. I'll post a link to it when it goes live. I'm also being interviewed by the local newspaper for an article about Wish Upon a Wedding. The journalist doing the story wants to be able to publish it on the Sunday of the wedding, September 28. I'll post a link to that article as well.

Another metster who has a blog of her own is going to be running guest articles for the month of October, and I've submitted an entry of my own to Telling Knots. I plan to try to post every day in the month of October with information about metastatic breast cancer to fight against the pinkwashing of Pinktober. I'm also using a breeding sim site I'm active on (Wajas) as a way to spread awareness. I have two customs with the Metavivor ribbon colors that I've bred for pups that I'll be selling for game-site currency in October, with a big sales post promoting them and featuring information and links about metastatic breast cancer. To help drum up more awareness, people can buy a pup for only 40k, which is stupidly cheap in site currency, to represent the 40,000 people who die each year from metastatic breast cancer if they post in the thread sharing something that they learned about MBC, forcing them to read the information provided, and also if they pledge to spread MBC awareness to counter the pinkwashing.

One of the pups I bred for myself, fairly identical to how her parents look.

I'm not going to be thrown under the bus, or swept under the rug, and forgotten about in the wave of Pink, Hope, and Cure this October. I'm gonna make some noise.

Scanxiety

I went through one PET scan prior to starting treatment, and that, along with some biopsies, confirmed the spread to my lymph nodes under my left arm, and to one spot in my liver. I was metastatic from diagnosis, and I started chemotherapy almost immediately. From December 10 to May 13, I never missed a single three-week-on, one-week-off chemo infusion. I had several CT scans during my weeks off, and they all said the same thing: each scan revealed the tumors had been reduced since the last scan. The chemotherapy was very effective in obliterating the tumor in my  breast and under my arm, and almost wiped out what was in my liver.

But I was starting to show the strain from cytotoxic treatment, I was becoming more wan, growing weaker, more bad days than good. It was time, my oncologist decided, to give me a break from chemo and try a different approach.

I'd like to take a moment to underline something here. He decided to give me a break from chemotherapy. Not end. I was not finished with chemotherapy. I would have to resume it someday in the future, but for now, he wanted to try to maintain it with anti-hormonal medication and keep it stable.

If it worked.

For several months, I received a once-monthly Zoladex injection to the abdomen, and every night without fail, took a Femara pill. Their purpose was to block all estrogen in my body, to put me in a chemical menopause, to starve the ER/PR positive cancer cells and keep them from growing. The question was if it would work at all.

Because it's not a matter of if it fails. It's a matter of when. We could only hope that it would work for a long while, and we didn't know if it would, or how well it would work.

August 19th was my first CT scan since then. It was early Tuesday morning. I had until Friday afternoon to get the results. Those hours in between became agony as I logged into my patient portal, only to find the results weren't posted yet. In the past, they were usually up in a day or two. Why weren't they up yet? Was it because there were bad results and they wanted to wait until my oncologist had a chance to break the news? What was going on? Would I have progression? Was the cancer growing despite the drugs? Would I have to go back on chemo? Maybe I just needed an increase in dosage of my current drugs. Would I have to have another biopsy to find out if I was still ER/PR positive? I know that sometimes tumor cells can change on you, and what's positive can become negative. What was going on?

I tried to sleep and would end up staring at the wall, holding my pillow in a death grip, my heart racing. I took maybe one or two Ativan more than I should, just to keep the anxiety from becoming a full-blown panic attack. Friday came and I logged back into the patient portal, expecting to see the results now. Still nothing. The hours crawled by until it was time to go to the appointment.

I popped another Ativan.

I was going to stop at the in-clinic pharmacy to have my Femara refilled while I was in my appointment, but my partner stopped me, pointing out that we didn't know what we'd find when we went in there, if he'd even keep me on the same medications at all.

Finally we were back in the exam room and my oncologist walked in. I stepped in with a few idle chatter comments, asking him how he was, that sort of thing, in an effort to not appear too anxious. He saw right through it, and I blurted it out less than a minute in. What were my results?

I was stable. No sign of progression. The Femara and Zoladex were working.

"I'm doing fine, then?" I asked him.

"No," he replied. "You're doing great. Fine is just average. You're doing better than average."

I told him I was glad to hear that, because I wanted to be around when Mars One puts the first humans on Mars in 2025.

I'm stable. It's working. Maybe it's just for now, but for now, damnitall, it's working. And it's brilliant.

The relief meant the Ativan no longer had to work to keep me calm, so when I got home, I went to bed and actually slept.

October Is Not A Time For Games

I like it on the table. I like it on the couch. I'm going to Germany for five months. Mine is blue! Mine is white! Mine has the pink ribbons! Blueberry! Pineapple! Avocado! Shh! Don't tell the men, it's just for the ladies! Post this as your status and show your support for breast cancer! Where do you keep your purse? What month is your birthday? What color is your bra? What's your relationship status?

Why do we even need a bra, ladies? Go without for a day to show support for breast cancer!

It's that time of the year again when stupid games dominate the Facebook landscape. They make no sense, and have no connection to breast cancer, they do nothing to actually raise awareness, let alone the far-more-needed funding. They exclude men, who can and do die from breast cancer.

The worst part is that some of these games are co-opting October 13 for their participation day. October 13 is the National Metastatic Breast Cancer Awareness Day, and these games aren't even relevant to any stage of breast cancer. How does going without a bra support the thousands of women who struggle with chemo and radiation and surgery and chemical menopause and metastasis? It doesn't.

It's Slactivism at its finest. Posting a random fruit as your status doesn't spread breast cancer awareness. Excluding men as part of your little inboxer games doesn't spread breast cancer awareness. Playing a game in secrecy certainly doesn't spread any sort of awareness. And it does nothing to help.

We have enough awareness of breast cancer itself. What we don't have is awareness of Metastatic Breast Cancer and what it really is. There's no cure. Breast cancer is not the "easy cancer". There is no cure. Thirty percent of women who detect theirs in an early stage go on to develop metastatic disease. An additional ten percent are metastatic from the time they're diagnosed.

When I was diagnosed, I thought it just meant I had to fight harder. It's just breast cancer, after all. Isn't that what we learn in October? Hope and a Cure? It's all about fighting, being a survivor, it's a beatable disease. I've had MBC for less than a year and I've lost count of how many women in groups I participate in have died from breast cancer. Not from treatment, not from something else, but from breast cancer that has metastasized beyond the breast. It goes to the bones. It goes to the brain. It goes to the lungs and liver, and those are just the most common four places.

One woman I knew, she welcomed me to a board when I'd joined, she was beautiful, inside and out. She was only thirty years old. She died several months ago from breast cancer. It's not a game. It's not a fruit. It's not a tee-hee status to keep the men guessing.  It's a beast, a monster, and it's very, very real.

We get less than five percent of the funding for research for metastatic breast cancer. The rest goes to early awareness programs, and of course, the ever-important CEO bankrolls. There's no profit in the dying, even though the entire sea of pink is built on the backs of the dead. There's no hope in metastatic breast cancer, and it's not profitable. There's no cure, but that's the secret they can't afford to let out. There's no cure for the early stage breast cancers either. Thirty percent go on to develop metastasis, no matter what.

They can't afford to let that become known. They're all about Hope and Cure, and where would they be if people found out that neither existed? That no one ever talks about the 40,000 deaths each year in the United States due to metastatic breast cancer, that it includes both men and women, and women under 40? What would people do if they knew that the death rate hasn't changed a bit, even with all the years of early detection programs? Nothing has really changed. Breast Cancer is still the killer it has always been, and all we can do is delay it for a while. There's no hope, and no cure. Not without funding for research. There's research out there that shows brilliant promise, but we need funding.

Metavivor.org and MBCN.org are two organizations that funnel donations to research specifically for metastatic breast cancer. 

The lives of women and men with breast cancer are not something for you to play a game with, we are not cutesy or naughty Facebook statuses, and we will not let you co-opt the one day of the entire pink month of October we have worked so very hard to get.

On Mammograms and Early Detection

Lori Marx-Rubiner, the President of METAvivor Research and Support, recently published an open letter to Amy Robach on her blog.

Ms. Robach spoke of the need for mammograms and aggressive treatment in order to beat breast cancer, and how breast cancer makes one stronger. Ms. Marx-Rubiner had an excellent response to this media myth, as well as highlighting some of the realities of metastatic breast cancer.

An open letter to Good Morning America News Anchor and breast cancer “survivor,” Ms. Amy Robach

Below are some key points that I found especially relevant.

I’m not saying mammography is bad, and as you say, it’s what we have. But let’s be thoughtful about it. We know that “catching it early” doesn’t necessarily make for a good prognosis. Many scientists believe that some cancers will spread and others will not, no matter how long they are in the breast. Many scientists also believe that if you are going to metastasize it is likely to have happened before initial treatment begins.

Let’s take, for example, DCIS. You can’t catch cancer any early than this “Stage 0″ diagnosis, where cells have yet to even leave the milk duct where they developed. While I can’t prove it, the trend I am personally seeing is that women diagnosed with DCIS are seeking aggressive amputations of their breasts and even ovaries to avoid the possibility of future disease. It is a fact that Stage 0 patients can and do metastasize – and it’s likely some do so before their DCIS is detectable. The same is true of women who have hereditary markers for cancer (BRCA1 and BRCA2 positive) – and these women have no discernible disease; rather they have a higher risk of disease.

And she also included a list of what we know about MBC, or rather, how little we do know.

We don’t know how many are diagnosed because unless one is diagnosed at Stage IV, we are already in the cancer registries and don’t get updated recorded again.

We don’t know how many of us are living with MBC for the same reason

We do know that about 30% of breast cancer patients will eventually metastasize. We know they will come from every single stage, including Stage 0, and we know that it can literally take decades from initial treatment before MBC shows up.

We do know that approximately 40,000 Americans will die from MBC this year, and that number hasn’t meaningfully changed in over a decade.

We also know what will save our lives: research.

We do NOT know why, when MBC accounts for 30% of patients and 100% of breast cancer deaths, our funding hovers below 5% of all breast cancer research funding.

We need to make some noise

Early-stage breast cancer and metastatic breast cancer are two different beasts. Treatment and information between the two can vary greatly. The American Cancer Society has a pamphlet for breast cancer, just one. And it only relates to early-stage.

When I was in for my mammogram - my first one, after I already had BC under the age of 40 - there was only information about early stage, early detection. It's hard to find anything about metastatic breast cancer anywhere unless the site is about metastatic breast cancer to start.

When general cancer sites do have something that mentions metastatic breast cancer, it's usually very bare-bones. Not a whole lot of detail, compared to early stage.

Metastatic breast cancer gets ignored in research and funding, and that's the stage that kills people.

40% of people with breast cancer are metastatic. That number is too damn high.

10% of them were metastatic from the time of diagnosis, like me.

30% of them were treated for early stage breast cancer, usually quite aggressively to boot. Mastectomy,  radiation, chemotherapy, hormone drugs. And they still develop metastasis.

Hiding from the metastatic beast won't make it go away. Pretending it's not an issue won't keep people safe. We need to make noise, like the people with AIDS back in the '80s who were fighting to get research for treatment and maybe a cure. I don't know how to do that, though. If I did, I'd be doing it.

All I know how to do is write. So I have this blog, and I'm working on a book, a memoir, to try to get the word out. If anyone has any more ideas, please feel free to share them.

We've got to be the squeaky wheel if we want the grease.

Advocacy

The final stage, it lies forgotten,
Drowned out in a world made of pink.
Breast cancer is cured, they say,
And it applies to even us, they think.

This is not true, the fight and hope,
We fight among the best.
But the cancer has its foothold
Far beyond our breast.

It matters not the gender
Or the age of who is claimed.
Religion, race, creed, or country,
It takes us all the same.

We see a finer beauty left to live
And, too, we keenly feel
The loss of moments now denied-
A reality too real.

To honor our fallen brethren,
We must raise a hue and cry,
And bring awareness for the Fourth
Before our own time comes to die.

Metastatic cancer is oft ignored
In favor of those who survive.
We beg researchers to forget us not,
For we too are still alive.

The ones who found theirs early,
Metastasis strikes even they.
Thirty percent cannot run nor hide,
And struggle to keep it at bay.

Ten percent more are metastatic
From the time they're initially seen.
For them, the hope of cancer-free
Has died before they can dream.

Of all the funding raised in the pink
A mere two percent goes toward mets.
The rest goes to CEOs and overheads,
And programs for early detect.

Thirty percent for the thirty
Is all that we ask, nothing more.
It's time to acknowledge metastatic disease
And to stop ignoring Stage IV.

PSA

So I have it on good authority that my choices for background music for my funeral viewing suck. No Jpop for me. All the cries. ;_;

Oh, well. I suppose when it comes to music, I really should listen to the person who 1) will be there to listen to it and 2) can actually HEAR the music in the first place.

Funeral viewings aren't exactly the place for peppy, perky songs sung in Japanese. Gosh darn it all to heck.

And I accidentally resolved my dilemma about when to share this blog with Jen by sharing it on FetLife in a comment on the Breast Cancer Suvivor/Support group and she saw my comment show up on her feed.

Oops. Oh, well. That solved that problem, I guess.

And yeah, I'm on FetLife. I have all the sexual drive of a rock thanks to the medications, but the snark groups there (like Spectators Only, No Participants and Profile Pitfalls) are always good for a laugh. Oh noes. The world knows I have a passing interest in Kink (and yes, oh god yes, it predates 50 Shades of Utter Crap) however shall I cope.

yes, basically.

In other news, Mom's getting me my first pedicure tomorrow. We shall see how this adventure goes. Related, I have two new pairs of shoes. A pair of gray peek toe pumps, and a pair of black solid toe pumps. They are surprisingly comfortable for my feet not wearing anything but sandals in forever.

I also picked up some new ecig juice to try. Bavarian Cream. Mmmmmmmmm.