Sunday, September 15, 2013

Bracing

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. 





18 comments:

Carolyn Frayn said...

I'm so sorry Shelli. I do wish they could manage your pain better. That is a lot of cancer, damn it.

As for Pink October, I have some things to say as well… I have never posted about it yet so one more rant will make it's way out into the ether. One of your posts was one of the first I ever read about MBC. Your words then, and now your person, mean a great deal to me.

I personally find it very hard to stand up for what I need. My last radiologist said I had to be the squeaky patient to get what I need. Why we need to be that way is beyond me… and I suck at it. Here's to you sweetheart, my thoughts are with you always… get what you need!!

much love...

The Dirty Pink Underbelly said...

I shudder to think the state I'd be in if I hadn't squeaked a little. I remember you told me that, and it has helped me to speak up to some of my doctors.

I look forward to reading your Pinktober post!

Love to you,
shelli

Nancy's Point said...

Hi Shelli,

I'm so sorry about all your pain. I sure wish you could find some relief. Suffering with an 8-10 pain level is just not acceptable this day in age. And telling anyone to "buck up" over any kind of bone metastasis is way more than unkind, it's inexcusable.

And as for your ribbon rant. You make some excellent points!

I'll be thinking about you as you continue to manage through all this stuff. Hoping you get some relief.

The Dirty Pink Underbelly said...

Good thing I stopped before telling anyone to buck up then. Thanks for reading, Nancy! I appreciate you input greatly.

I did have a good visit with the PA at my oncologist's office yesterday. I felt like she understood my viewpoint and severity of my "only in the bones" disease much better. We talked about my pain and what we might try for future 8-10 pain.other than the news of my CEA more than doubling (to which I said "shit") it was a productive visit.

xo
Shelli

Kelley said...

Shelli... This is the first time I have read your blog posts, and was directed here from Nancy's point. Reading your post validates the experience I am living with my mother. My mom is losing her battle to cervical/endometrial cancer. She started with both at the same time. As you mentioned, these other gynecological cancers do not get the parade, the research, or .com on the information highway and has made helping her help herself that much more of a challenge. It isn't the cancer that will kill her, it is the side effects and the lack of interest in listening to her at her "well recognized, patient centered care" hospital.

She was diagnosed in January of this year - treated with radiation and chemotherapy and came out of those 5 difficult months "with no evidence of disease" for 2 weeks. By then it had spread to her stomach and tissue outside of her kidney, and no one noticed. Her pain is a 10 every day. They are telling her that her previous treatments, from the beginning are the reason - she doesn't believe that is true. She thinks it is the chemo (taxol/carboplatin) causing the pain - she too has a fractured pelvis - can't walk, can't drive - and the solution they gave her is narcotics. It isn't helping - except to make her seem to be so far from the person she is. Pain management's alternative is steroid injections - but no one is treating the symptoms she is complaining of - an ache in her legs and back; hot pain radiating down her legs. Now they have told her there is nothing more they can do and the hospice nurse is at her home this morning. She went from curative cancer to nothing we can do to help you in what feels like minutes, but really a few short months. She is suffering, and I don't want that for her - but in this day and age, I thought we were beyond sending folks home to die - at 61 years old.

Anyhow - I am interested in making my life's work generate attention and a place for resources for people with cancers that lack the billboard. A symposium for caregivers and patients; a url that provides help and alternatives; something - financial resources, nutrition, a spot for the "this is what is working for me" and other support group style boards, end of life attorneys, strength and conditioning, holistic complimentary options - or whatever I can get my hands on. I do need to think it through, but I do believe that the patient shouldn't have to choose one bad option for another. I know there are places that exist to try to help, but how does joe public access that?

I am sorry to hear of your struggle, and if you accept them, I will include you in my prayers and be thinking of you.

ihatebreastcancer said...

Hi Shelli
I always enjoy your posts--you are a gifted writer and always seem to have a wonderful combination of humor, verve and common sense.
You have a great voice!
It sounds like you have a lot going on--I hope things will go well and that you'll get some pain relief. Hang it there.

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The Accidental Amazon said...

Oh, Shel. I do love you to pieces. Excellent points all around, as usual. I hate ribbons, too. They've become nearly meaningless, it seems to me. Why aren't we just trying to halt mets for everyone with cancer?

I hate how much pain you are enduring. I hope that you will be able to find some enduring relief soon. Very soon.

xoxo, Kathi

The Dirty Pink Underbelly said...

Kelley, thank you for reading. Good luck on your road with your mother. Very aggravating when pain is not taken seriously. That is the issue I have been hearing about the "big" cancer company, and why I still hesitate to join. Hospice has a lot to offer, not just "the very end" stuff. They are more liberal with pain control, from what I understand, and I hear very good things in the palliative care front. Have I called them yet? No. But I should. I'm such a phone baby.

Thank you for your prayers. -shelli

The Dirty Pink Underbelly said...

ihatebreastcancer, I just took the survey on your page. Thank you for reading and thank you for your encouragement! -shelli

Susan Zager said...

Shelli I am so sorry about your pain. I hope you can find a pain specialist that can prescribe meds that won't make you so fuzzy and can get rid of your pain. I hear you about all the ribbon talk. xoxo - Susan

The Dirty Pink Underbelly said...
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The Dirty Pink Underbelly said...

Kathi, YES, YES! You got it! Ribbons have become meaningless. Research needs to be done across all metastasis.

Thank you, thank you, thank you, for reading my humble ranting blog.

xo, -shelli

The Dirty Pink Underbelly said...

Susan, thank you so much for reading. There are good weeks where the pain killers are enough, even days when ibuprofen suffices, and then there are days when nothing seems to touch it. It is frustrating. And scary watching my skeleton fall apart.

xo -shelli

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The Dirty Pink Underbelly said...

Time to "moderate".

Apparently there are differing opinions, even among doctors, as to whether or not stage changes. Ask your doctor. Not me.

tccomments2013 said...

oh, my dear shelli,i am so sorry I've been remiss in responding to this excellent, insightful, down and dirty candor that needs to be so in their faces. I HATE that you are in such pain, and that you have to once again be bombarded with all the nonsensical, out-dated, and irrelevant ribbon bullshit. keep being that squeaky wheel - it's like sweet music to the ears of so many who love you, and so desperately want you to be able to be comfortable and have the care you need to zap away so many of those damned cancer-ridden areas. whatever it takes to get the doctor you want AND the hospital you feel safe with is worth the effort - but I am so sorry you have to deal with it all by yourself. I love you to bits, shelli, I think of you every day, and I can only imagine what degree of energy that you are so willing to exert, and rant about, and squeak as you so generously share to help others leaves you drained and exhausted and in pain. please, please be as good to yourself as you can. I am sending every manner of good intentions, good karma, juju, and my most powerful vibes so that soon you will be in a much better place with a good treatment plan and relief from the awful pain.

much love, and beams and beams of light to help you find your way, my precious friend, XOXOXOX

Karen

The Dirty Pink Underbelly said...

Dearest Karen, it is good to hear from you! I have been wondering how you are doing. You know, the rotten part of this first weekof October has been that the worst of the ribbon crap has come from within. That is so frustrating and disappointing. If I stayed off of the internet, I might barely notice it was October! I have some appointments coming up though and am bracing for what might be festooning the imaging center and the Radiation Oncologist's which in the hospital. I have received emails warning, I mean telling, of upcoming pink festivities at the hospital. Perhaps I need to print copies of my Dirty Pink Truths to have on hand in case I need to counter any pinkness!

Thank you for your concern. My pain has been dweatherch better, other than the two month old headache, fibromyalgia aches from the changing weather and muscle aches from walking all the way in to an appt today with my walker instead of being taken in with the wheel chair. I like that I am able to walk right now.

Love to you! -shelli