Tuesday, September 17, 2013

When a graph does this...

A skyrocketing graph entry can be good when it shows:
  • Grade Point Average
  • Net Profits
  • Donation Totals

A skyrocketing graph entry can be BAD when it shows:
  • Gross National Debt
  • My Tumor Markers

Sunday, September 15, 2013


Goodness it's been a while since I posted. I've thought about it. Thought I should. But I hate sitting in the chair at the table, and can't do it for very long at a time. I ration out the time I can spend there. 

Oh, I stay in touch. I'm on Facebook daily, checking email and reading blog posts when they will load on my phone. I could blog there, but I hate typing more than a sentence in one-fingered android mode. 

I'm starting to see folks bracing themselves for October. That's like stretching it out though, and I am not down with that. I have a few gripes that beg to be blogged. It's like putting it out there to the universe and off my mind, makes me feel like I've spoken it.

I am glad that more folks with MBC are speaking up and seemingly making themselves heard on the inter-waves. Again this year I don't feel like I have to take on the energy of ranting or cyber-picketing. Others are doing it, and that's great, even when I don't agree with every way they are doing it. Maybe I'll just speak my mind now and shut up until November.

I am most anti-pink because it distracts from the truth, misleads the public, and encourages the objectifying of women. The very thing that we are trying to raise our girls to stand up to and shun is glorified ad nauseum in October. So my conservative feminist side objects the most. Others have said it best. The way my brain-vocabulary link -up works these days, I'm better off reblogging. Besides, do we need to reinvent the wheel every year? The things we said about the pink ribbon movement and the objectification of women is as true today as it was two years ago, so why not use those words again. 

Maybe I'm disgruntled by nature. I wanted more public awareness and attention on metastatic breast cancer. But I'm not happy with every way it's being done. I don't think that to stand up to the pink ribbon we need to become more like it. There is a ribbon for every cause, condition and disorder, even dog breeds have ribbons. The ribbon is over done. It's so over done that there are no colors left to be claimed. I don't agree with opting a color combination for MBC, with lighting up buildings in that color combination, or using the striped ribbon. It's just another ribbon, and just another color. If you wanted to be fluffy and ribbon-y, then you could have been happy in the pink ribbon crowd. Cutting MBC with the same cookie cutter doesn't make it stand out. It makes it the same. Metastatic Breast Cancer isn't any fluffier or cuter than Breast Cancer, so why try to cutsie it up? 

Let's lose the cutsie. 

Let's lose the ribbon. Let's not think we need to add some baby blue to the baby pink on the stupid ribbon because, oh my gosh, a small percentage of breast cancers and metastatic breast cancers are also had by men. If you want to join the ribbon crowd, men, then just suck it up and accept the stupid color that breast cancer was landed with (in a marketing ploy, if we all recall) and get over the genderization of colors! I'm really sorry that men get this cancer too. But unless you want to start a new disease and call it baby blue male breast cancer, then just go along with the fluffy feel-good marketing crap already assigned your disease. Or your husband's disease. He probably doesn't really want to wear a ribbon anyway.

I'll say it again. Women and Men get breast cancer. I know that our society has decided that men come first in everything, but we will NOT say Men and Women when talking about breast cancer.

And while I'm making myself wildly unpopular, let me just say that there is a huge, gaping emotional canyon between a woman losing a breast and a man losing a "breast". It's still cancer and it still sucks, but it's NOT the same. All the societal difficulties of losing what defines femininity do not apply to a man. A man doesn't have to get special bras and adapt a whole new wardrobe style after breast cancer. He doesn't have to recover or re-establish his sexuality. If he had a mastectomy, it's a deformity, not an assault on his entire sense of self.

The only thing that can even closely compare to a woman losing a breast or two to breast cancer would be if man lost his penis to penis cancer. The thing that makes him a man, that shapes even his choice in motor vehicle, the thing that has given him power over women throughout the centuries.

But wait, unless you're Tom Jones, your penis doesn't really show through your clothes and visibly make up who you are, so it's still not the same. Just like a man losing a breast, though cancer is cancer and cancer stinks, is still not the same as it is for a woman. 

Hold on, you say. Men DIE of breast cancer, too! Yes, they do. But at the stage of metastasis, do we really need to add stripe to the stupid ribbon just so men will feel more a part of it?  (see above) This year seems to be becoming the Year of the MAN in the metastatic breast cancer world, and while I would not have them ignored or ostracized, what the hell with all this special treatment? 

I'm not finished yet, though, with view points that will surely make me unpopular. Just as breast cancer is not the same for men as it is for women, METASTATIC breast cancer is different from breast cancer, and different from any other metastatic cancer.

Metastatic cancer stinks in a whole other layer of stink than early or beginning stage cancer. Metastatic is "Advanced" or Stage IV. Why are those with Stage III trying to claim the label of "advanced"? This isn't algebra, and Stage III is not Stage IV. Sure it's scary; scary as hell, but it if it hasn't spread, it's not metastatic, so what you're facing is still completely unlike what someone with Stage IV breast cancer is facing. This is one of the reasons I stopped participating at Inspire.com.

*side-bar thought: why have I seen nothing about Ovarian Cancer Awareness this month? No painting the world teal? Well, a) because ovarian cancer does not get the same hammered out attention that breast cancer gets, and b) because ovarian cancer does not get the same objectified, sexualized attention that breast cancer gets. Be glad about that. 

Metastatic Breast Cancer is different from other metastatic cancers in that Stage IV in breast cancer does not mean an immediate death. Compared to Stage IV pancreatic cancer, Stage IV breast cancer has it made in the longevity shade, some might say. I'm sorry. Metastatic breast cancer is now more treatable than it was 10 or 20 years ago. I'm not sure why those strides have not applied across the metastatic board. THAT is why metastatic breast cancer needs more than 3% of the research dollars in breast cancer out there; it needs research dollars that will make strides for any cancer that metastasizes. If we understand why breast cancer metastasizes, should that not help us understand what makes other cancers spread? I would think so, and that is why there should be more funding dollars directed toward research into metastasis, and not just because "we want our share" of breast cancer funds. I find that attitude embarrassing. It sounds like a petulant child who didn't get her share of the pretzels at snack time. Another reason why more research dollars need to be used in studying metastasis is that Stage I, Stage II, Stage III and even Stage 0, are NOT safe places, shielded from metastasis, just because the Komen says you're cured. Stage IV is a possibility for EVERY stage of cancer, and while that isn't happy and fuzzy and warm like a Parade of the Cured, it is REALITY. 

There is no cure for breast cancer, and anyone who has had it is technically at risk for metastasis.

Metastatic breast cancer is what kills.

These are the Dirty truths that need to be accepted. Cancer ain't pretty, even the kind with a pink ribbon slapped on it.That is the awareness that needs to be spread.

I've written too much to continue, but who knows when I'll be at this keyboard again, putting this much time into it, so I keep typing.

I have two consultations this week regarding the compression fracture I have in one of my lower thoracic vertebrae. One with an interventional radiologist, and one with a spine surgeon. I don't want surgery, I would prefer the outpatient procedure of vertebroplasty, like I had in early 2012 in a lumbar vertebrae. The interventional radiologist I am seeing is the one who performed the other vertebroplasty, but I don't want to have it done at his hospital. My radiation oncologist got me in for consult within about a week, while the appt I made for myself with the spine surgeon, although referred by my other orthopaedic surgeon, had a lead time of over a month. I don't want surgery, but I'm hoping he can refer me on at HIS hospital to interventional radiology. Somehow I'll save face with my radiation oncologist, whose department is the only thing about the other hospital I can tolerate. 

After I address the pain being caused by the compression fracture, I will hopefully be able to lie flat on my back on a glass table again for radiation on my right femur/femural neck. Hopefully all before the end of the year and the rolling over of out-of-pocket totals. 

This leads to what I really wanted to gripe about today, but the looming of October got in the way. I have lesions in virtually every spinal vertebrae except the four (?) that have been radiated. They HAD lesions and we zapped them. Also my left scapula is "pretty chewed up", there are lesions unspecified and unnumbered about my ribs, my skull and I think scapula and something fishy on my right humeral head, in addition to what we zapped on the left femur and what has recently appeared on the right femur. I don't read the language of scan reports, and details are never explained, but suffice to say I have a LOT of freakin' cancer. This will be my FOURTH course of radiation to bone metastasis. I am in pain every day. Sometimes I am in level 8-10 pain. I can't seem to get the attention to pain management that works for ME, and I haven't driven myself anywhere in almost a year. It would be unkind to say "buck up" to anyone with bone metastasis, even metastasis to only one vertebrae. So I will stop before I do. I think I need to find a way to feel that I am taken as seriously and given as much thought as my extensive condition deserves. One way will be to stand up for my right to choose a hospital. It won't be the easy way out, but it's the way I need to go with this. 

So thoughts, prayers and juju can be directed at my ability to stand up and take the less easy path. This Tuesday and Thursday are my consultations. Tuesday with the interventional radiologist at the hospital I hate, and Thursday with the spine surgeon at the hospital where I want to be.

Thoughts on standing up for something YOU've needed? Do share.

I read over this in published form and I see words left out and grammar that doesn't agree, but when I go back into edit, I can't find it. You probably don't care, but I had to say "I know" in case you do notice, because that's just still me.