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Sara...

  • ...is a happy, ordinary, middle-aged, suburban woman who paints odd pictures, gardens in a straw hat, lives with the love of her life, is owned by one cat and the ghosts of several others, and walks a little funny 'cause she has a fake leg. She started this website because there's more to life than what we lose, and we need to let each other know what's possible, even if it's only a happy, ordinary life.

November 2011

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    sara at saraarts dot com

    Make sure the subject line of your correspondence is clear and specific. I do not open e-mails from strangers unless I can tell in advance that I want to read them.

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Good reads, grownups only

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Comments

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Ron Sullivan

As you said: "FUCK!"

And also, yeah, WTF can you do but wait and watch and suck up some buds 'n' sunshine?

And. The same damned thing could have happened with Blue Cross/Shield, you know. Yeah, you do know. I have one of those Thee-O-Ries about how they save money by strategic incompetence, right along with the official gummint bureaucracies. Black holes, energy-sucks, all of them.

Jeannie's doctors, once we'd kidnapped her to the transplant hospital in Miami, had the same take, by the way, as yours. One of them said to her, in my presence, "I come to work every day to help people get better. That's all I'm concerned with, and whatever happens upstairs, I'm going to work to get you better."

Oh gods.

Those folks tried. I'm glad you've got your docs on your side too. I'm burning a pinch for the outcomes of your next tests.

Is there any way of padding that socket? Man, I thought it was bad to walk on sore knees. ow.

I emailed my sibs about your blog, just btw.


Sara

Yes, Ron; you are absolutely right. This could have happened on any insurance plan, private or public, and it does, every day. And this is actually one of the hidden costs of health care. Someone is paying all these people to put forth and adamantly defend wrong information about how to navigate overly complicated systems of paperwork in every office that has anything to do with health care -- insurance offices, doctors' offices, financial offices at hospitals... It's a ubiquitous problem. And it's part of the preposterousness my sister and I ultimately laughed about together. La plus ça change, etc., n'est-ce pas?

Re the leg thing: You know, I was told never, ever to stuff anything into my socket, that I could do tremendous damage to my stump somehow if I did that, and I would NEVER advise another amputee to do anything like that, but --

Ballet dancers stuff lambs wool into toe shoes for cushioning. There is a dance supply store in West Concord, and the next time I go grocery shopping, I am going to pick up as big a wad as I can find.

Meanwhile, Vitamin E oil is my very best friend. Sooooooothing. :)

Big love to you and your siblings.

laurie

Fuck, indeed. I don't have the words, except to say - may the damn cancer stay the hell away. We need your creative, funny, brilliant presence to be around for a long time.
And the administrative nightmare you mentioned? I am convinced that this is why the per capita health care costs are so much higher in the US, despite not having a single payer system. I think it is outrageous that you had to wait four whole days to get your news just because someone screwed up the paperwork.
And the photos? Gorgeous.

Michelle | Bleeding Espresso

Mah. What a pain in the socket. Thank you for sharing the lovely photos though. I posted some of spring around here yesterday that you might enjoy as well.

leslie

Well yeah, fuck about sums it up. Somehow the whole referral garbage just adds insult to injury - it's enough to have too deal with the health issues without the bureaucratic bs on top of it. I hope they did indeed get it all and you can go on to deal with other stuff like enjoying the daffs and getting your leg/socket improved. This was not the result anyone wished for you, that's for sure!

B. Dagger Lee

Girl, I've wrapped you up in my thoughts so you are covered with gold honey and glory.

yrs, B. Dagger Lee

Jana

A few daffodils for you, my friend. These are particularly special flowers, growing in the area near Julian, CA that was swept by wildfires last fall (SoCal is now being swept by wildflowers, one of thee most brilliant seasons ever).
:)

kathy a.

hi, sara. over from ron's place. there aren't really the right words, but what you have been going through sucks. and you are amazing and strong.

Sara

Thanks, folks.

There are things to bear in mind here. First, they got the fucker out, and there aren't any more big enough to see right now. Second, it was stuck to the outside of my brain, totally self-contained, not invasive. Third, they still think it grew very slowly because they generally characterize my particular case of melanoma as slow-growing. And now we are going to be looking for it to grow back or for others to rear their ugly heads, so it's unlikely any others (unless or until an inoperable one shows up; perish the thought) will have any chance of getting as far. So as much as it sucks that the melanoma has found my brain, my very favorite body part, suddenly skipping over all the lush prospects between my pelvis and my head, and that I now have to do extra work to keep it out of there, if possible, from now on, things still could be a lot worse.

That said,

Laurie -- Yes, the administrative costs are part of the problem, especially, as Ron points out, when private insurance companies seem to deliberately hire and promote incompetent or simply obfuscatorily inclined individuals specifically as a cushion against bill paying. Every time an insurance company doesn't have to pay one of our medical bills, it makes money. And no one should believe for an instant the insurance companies aren't aware of this. And these are just some of the reasons no one in this country really knows the actual cost of any given procedure.

I'm glad you like the pictures. There are a couple here I really love, too. And you know, these photos wouldn't exist without that walk, which wouldn't have happened without everything else.

Michelle (Bleeding Espresso) -- Yes, you nailed it. It's just a big fat pain in the -cough- socket. Really, nothing has changed, because watching and waiting and the occasional surgery are most of what I've been doing ever since I was initially diagnosed with melanoma. Now I just have to watch more intensely, which means more of my life spent in hospitals and doctors' office. Still, though, it's not so bad.

Leslie -- Thank you. No, we really were expecting it to just be a meningioma, which, by the way, if you're going to get a brain tumor at all is totally the kind to get -- slow growing, non-invasive, non-metastasizing, just a freakish little growth like a mole only on your brain. Still, I'm very lucky that if it's not a meningioma, at least it seems to have acted exactly like one.

B. Dagger Lee -- Thank you, sweetie. It's nice to see you here.

Jana -- Thank you! Spectacular! Fascinating how the post-fire landscape of CA looks so much like the early spring landscape of MA, all bare branches and new things sprouting.

Kathy A -- Of course I know who you are. Thank you so much for stopping by and saying such kind things. What I'm going through, though, I assure you does not suck nearly as much as what many people go through with this disease, not to mention all the other "slings and arrows of outrageous fortune that flesh is heir to."

Shoot, nobody's shooting at me, for example. (Not right now.) So really, I count myself very lucky. Just a little freaked out, once again, and pissed on everyone's behalf that we don't have a health care system in this country that will take care of everyone as well as I've been taken care of, minor bureaucratic silliness and all.

elizabeth

Well, I guess in all my research in all sort of illnesses, I kind of missed cancer because I had to google "Melanoma" after you said F*CK - because it sounded like a sort of friendly word, maybe a varient of lily or orchid. But it turns out that is incorrect as I found out and yeah, I think finding out that you had a giant chunk of cells gone pirate/mercenary rampage in your head would be something rather scary indeed. Since I have yet to find a biofeedback meditation to keep my cells in line.

I think however, like all things which you seem to take so calmly and would be freaking me out, that over time, it will just be the, "yeah, I've got to keep checking for the 'noma in the head" - becuase one thing I have learned about illness/disability are what CAN become emotionally commonplace.

Which sort of moves to the next topic of what SHOULDN'T be commonplace, which is an red and oozing sore that goes from your anus to your area 51. And the image of you stomping around, grinding your prosthetic into that particular region, which quite honestly is probably NOT the toughest skin in the word since we tend not to pick blackberries with it, or clean cutlery or other 'skin toughening' techniques makes me squirm a bit. So please DO something, so that you may enjoy the walk for some time to come. And so I can stop reading about it and squirming.

And to be quite honest, if you were "cool, savvy" etc about hearing that you had melanoma in your BRAIN, maybe there WAS some damage. But I am glad that you are so obviously still YOU (no, that wasn't a direct insult, why do you ask), and able to enjoy things like springtime.

Rock on?

Sara

Okay, for the record, now that my decadron-inspired acne and rashes have almost completely cleared up, NOTHING is red and oozing, not even the areas most pressed just now by my oversized socket. This is because (a) I've been wearing my girdle, and (b) Vitamin E oil is my best friend. Truly.

Second -- not to give TMI or anything to the world at large but anything to help you sleep nights -- I am now on the bloat leg of my cycle, so I am gaining temporary water weight everywhere, so I am suffering less for this week at least.

Third, tricycle season has returned! It's still cold, but there's no snow or ice on the roads (for the moment), so I've been able to run local errands mostly sitting down and still getting exercise. Yay. You of all people know the value of keeping things moving however one can.

As for suaveness, you know, after all these years (decades) and all these same lab results (it's ALWAYS melanoma, whether they're taking it out of my brain or letting me know that when they cut off my leg they also took out some extra lymph nodes right next to the hacking off point that looked affected, and oh yeah, they were), it just surprises me a tad that I never respond with anything but the same wobbly-kneed, icy black terror of my very first diagnosis. Part of me thinks I should hear, "Oh, it was melanoma" and just kind of shrug and say, "Oh, yeah, well what were the odds it would be anything else?" or "Eh bien, c'est la vie." Or how 'bout a nice, polite, inoffensive to others, "Oh, well that's disappointing."

But no. It's always terrifying, and I always fucking curse.

And now that I've let the F-bombs in, I've probably blown my nice little R rating and no children will every visit my site. Hélas.

I think I shall baroque on, if that's okay. I feel the need for some harpsichord music.

Dee

Dear Sara,
I've been reading your blog off and on through links from Jeanne's site in Seattle. I just want you to know that you're one of my heroes, even though you say that you just want to live as normal a life as possible. I'm so sorry that you've had such a hassle with the bureaucracy, but am glad that you found humor in the whole situation. It's almost better in that case to expect such hassles, I guess.
Also, it's a good sign, I think, that you still get freaked out about the melanoma diagnoses . . . it'd be more scary if you accepted it as an everyday, commonplace experience. By treating it as no big deal, I'm afraid that nothing would ever be done to improve prevention and treatment of diseases. In the last six months, I've found out that: 1) I have breast cancer again in the same side as before; 2) that instead of it being small (3mm), there were tendrils of it throughout the breast tissue; 3) that the red rash I noticed under the tissue expander on the right side was cancer spreading via the lymph channels (i.e., they didn't get it all with surgery); and 4) that it has also apparently metastasized to my bones. Each time, my heart raced, I cried, and then cussed. It sucks and we should be able to acknowledge that it sucks and it's scary, because it is. We shouldn't get complacent about cancer.

But, what I most admire is your ability to live as normal a life as possible. I had a period back in December when all I thought about was cancer. The opportunity to do some work, while I resented it at first, was a good distraction and reminded me what my life is about. Cancer can recede to the background. It's always there, but I have too much to do to allow it to take over my life.

Last week, I went to the southern Oregon coast to see an old and very dear friend of mine. It was a longish drive, but the scenery was absolutely beautiful! I'm not the photographer that either you or Carver are . . . but there's some shots of these fantastic rocks on the coast of Bandon, Oregon that you might like at: http://deeupdates.blogspot.com/2008/03/my-wonderful-quick-trip-to-bandon.html.

Sara

Lovely photos, Dee. Thanks. :)

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