Coasting

I haven't written anything for a while because there isn't an awful lot happening that is reportable.

The ibandronate/Boniva has helped with the hip pain to a reasonable degree. The tumor in my spine is making itself felt, but I'm used to moderate back pain - it's not pleasant, but I can handle it. I still need a cane to get around, but I can walk half a block or so without knocking myself out for the day, and I can sleep for several hours at a stretch. This is a good thing.

We're taking advantage of my little spate of increased function by going on a very small vacation, which I am busily planning.

I'm also taking advantage of this reprieve by driving around and running errands. I know that doesn't sound like a lot of fun, and certainly it tires me a lot more than seems reasonable, but I'm enjoying myself. It's amazing what a little trip to the grocery store or library does for the soul when you haven't been able to do anything constructive for a long time.

We also got a used van, and are planning to get a wheelchair/scooter lift put in at some point, so that I can use it easily when the hips become non-functional again.

And I think that's all the news that's fit to print!

Nothing Much...

A few random updates:

I got a present from Denise the other day. Thanks, Denise!!! It's a really awesome felted critter, it's so cute and reminds me of my parents' dog. Except that she's not orange and pink, and she has a totally different tail and ear set, and she moves and begs for stuff, and she has lumps, and she growls and barks at people who come to the door... where was I going with this?

Oh, yeah. Unfortunately my camera is broken, so I can't post a photo of the critter for you. So you'll have to link to her blog and check her stuff out for yourself. It might take you a while to get to some of her real critters - she's very eclectic, so there's something new and wildly different every day. But you can learn a lot about felting, and maybe about dyeing, and definitely about creativity. Denise is a closet genius. If she were scientifically inclined, she'd be Tesla, or maybe Edison, except with a braid.

The Tamoxifen, or the Boniva, or some combination thereof, is giving me monster joint aches. Wheeee. The flip side of that is that at least for the moment, the Boniva really helped with the bone pain in the hip. And while joint aches are not really great for the Quality of Life, they totally trump bone pain.

The nausea, on the other hand, pretty much sucks. But I guess you can't have everything.

My giant Birthday Balloon is still floating in the living room. It's starting to look a bit like me - a bit withered, but still trying. I appreciate the effort, so I refuse to get rid of it until it sinks to the floor. At which point I'll throw it away, but I'll feel guilty about it, because it was trying so hard.

Maybe if I were a better person and more prepared, I would have a helium tank around here so that I could perform resuscitation - but I'm worried that if I had a helium tank I would do something wrong and blow up the house with it. Or maybe fill the house with helium so that it breaks free of the foundations and floats into the air and then comes down on some poor woman with striped socks and red sparkly shoes and then hordes of squeaky Little People would smack me with giant lollipops and force me to go camping in a field full of poppies and ragweed so that my allergies would knock me out until the flying monkeys could get me.

I'm afraid of the flying monkeys. So the balloon is going to have to continue on its current course and fade away to a lumpy, annoying, shapeless, dysfunctional thing that will need to be dealt with somehow, in spite of its best efforts.

The parallels are obvious.

And finally, a suggestion:

The fall apple crop is awesome this year. Seriously, go out into the countryside, enjoy the last few autumn leaves, visit a farm and pick up a bag or two of your favorite apple varietal. That way you will feed a small independent business and yourself, at the same time. It's a Win/Win!

While you are there, pick up a pumpkin or two - Halloween is only a couple weeks away, and it's never too early to enjoy Halloween. The Cat is trying to prepare for Halloween by practicing at turning black. So far all she's managed is throwing me Black Looks, but she's practicing that a lot, so she might get there eventually. Or she might manage to turn me into a Newt. You never know.

This is an old photo of The Cat, but it gives you an idea of what I put up with every day in terms of Attitude. I didn't photoshop in the eyes - she's got blue eyes, and sometimes photos just come out that way. Or else maybe the camera picked up on the quality of her soul, I can't be certain...

Metastatic Breast Cancer Awareness

Today is Metastatic Breast Cancer Awareness Day.

It's a good thing that there is a day specifically aimed at getting people to think about Metastatic Breast Cancer.

Because let's face it, we don't want to think about it. If we know someone who has breast cancer (and there are few out there who don't, even if they aren't aware of it), our greatest fear is that our loved one will move on to Stage IV. If we are someone who has breast cancer, or who is a breast cancer 'survivor', our greatest fear is that we might some day move on to Stage IV. If our loved one has metastatic disease, we fear and grieve for them, because we know that there is no cure and that there is a 97% chance that their cancer will kill them (painfully and cruelly)... and a 80% chance that it will do so in less than 5 years**.

And if we are in that population of folks with Stage IV Breast Cancer... well, we know we are the walking dead.

What's more, everyone else knows it, and they treat us that way. Even if they don't mean to. Some treat us with greater kindness, because they know they will not have us for long. Others avoid us, as though we were contagious. Many try to shut us up or force us to pretend that we are other than what we are, by telling us that we might not die ('they could find a cure tomorrow'), or by telling us that it's all in our attitude (by inference, we got here through bad attitude, and are dying because we are not simply turning our frowns upside-down).

Even the organizations that are supposedly on our side ignore us and cover our scariness by lumping us in under the generic label 'Breast Cancer Survivor'. Ironically, it is the very fact that we are not survivors that makes them want to pretend we are not there. We are the Monster Under The Bed; we are the future for many of them, the future they are most afraid of, the future they are most anxious to avoid. We are the reason they ingest poison and suffer radiation, in hopes of escaping the teeth and claws of the Monster.

They have good reason to be afraid. More than half of all hormone-negative breast cancer patients will experience a recurrence, and even those in the lowest risk group - hormone positive cancer patients who have received all the standard treatments - have a 42% chance of recurrence. And recurrence means a greater chance of metastasis.

We are the keepers of the Monster, and that makes us scary. But we are also You, your mother, your sister, your partner, your best friend. And that makes us Beloved, and Important, and Precious. We are well worth saving.

Yes, it's a good thing that there is a day set aside for Metastatic Breast Cancer Awareness. But I can't help but wonder why we are only given a day, rather than a week. Metastatic disease is currently incurable, and we haven't gotten very far in controlling it or treating it. The treatments available are largely toxic and often are harder on our quality of life than the disease itself, and sometimes kill us off more quickly than the cancer would. The pharmaceutical companies themselves admit that there is little solid evidence that chemo significantly prolongs the life of even those who have a good response (as measured by tumor stabilization or regression).

Yet we spend less per week on research to cure metastatic breast cancer (and thus all breast cancer) than we spend on one cup of coffee per capita during the same week. And most of the research that is being funded is funded by pharmaceutical companies whose profit, and therefore whose funded studies, are invested in current (non-curative, toxic) treatments, rather than in development of new, less toxic, and potentially curative treatments.

Wouldn't it be easier to sweep the Monster Under The Bed away by funding research for a cure for metastatic cancer, rather than by refusing to look in our direction?

Be more aware of Metastatic Breast Cancer. Spend a whole week thinking about it. And if you can, spend some money on it, too - give to organizations that are funding research that is radical and groundbreaking and potentially curative, like the Breast Cancer Research Foundation or Stand Up 2 Cancer, or give to an organization that directly helps people who are suffering with breast cancer, like many of those listed by BreakAwayFromCancer.com.

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**Keep in mind that this statistic is misleadingly optimistic. In that 'surviving' 20% are the folks who die the day, week, month after their 5-year anniversary. On the other hand, if you are lucky enough to make it that 5 years and are relatively healthy by that time, your chances go up of making it another 5 - only half of that group will die in that time.

Another Step

Today my dear friend Roberta had to cede more territory to The Monster.

Today my oncologist confidently stated that some day we would have to move on to chemotherapy. He was able to do that because we all know that at some point the symptoms/pain from the tumors will be bad enough that I'll wonder whether it's worse than the chemo would feel. I'll have to balance evil against evil, with no way of knowing which is worse. We all suspect that point is coming in the not too distant future.

In the end, the result will be the same. The bumps in the road might be affected by my choices, but the destination is assured.

Some day it won't matter what choice Roberta or I make. The Monster will have eaten everything it can, and we will escape down a path that The Monster and our loved ones will not be able to follow.

Until then, Roberta and I just do as we must do - or stop doing what we can no longer do. And endure it, because refusing to endure is not among the choices offered.

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Another reminder, which I will probably be repeating for the next couple weeks. It is Breast Cancer Awareness Month. Get your thermogram (or mammogram if that's your only option), do your self-check (yes, I do recommend it - I know too many women who found their cancer through self-check when their mammograms showed nothing), get your annual pap smear - or PSA test, if you are a guy. Make sure you are getting plenty of vitamin D via sunlight and/or D3, make sure you are getting enough iodine, get your hormone levels checked if you suspect they might be unbalanced.

But also - if you feel that something just isn't right with you lately, don't let yourself be put off just because initial tests don't show anything. I know it can be discouraging to deal with doctors who pooh-pooh you, but keep at it until you find the real cause of the problem. If I hadn't let myself be put off, we might have found my cancer a year earlier, and it might have been curable at that point. Trust yourself and your knowledge of your own body. Be your own fierce advocate.

You are worth it.

October Is A Good Month

This bears repeating, so I'm posting it on both my blogs - but if you read both, you are only obligated to read it once!

October is my favorite month. The leaves turn colors, the weather is suitable for all things woolen, the air is crisp and so are the apples... what's not to love?

Not only that, but there is Halloween/Samhain. Not to mention my 21st wedding anniversary. And my sister Jana's and brother Joel's birthdays (happy birthday to yooooooo... love you guys!!)

From now until the first of the coming year, it's Holiday Madness - Hooray!!

AND October is Breast Cancer Awareness Month, and Non-GMO Month. Please link to information on both issues, if you aren't aware of them already. They are critical to your health and the health of those you love. Take action where you can, educate where you can, get involved where you can.

Have a wonderful autumn, everyone!!

That's What I Said...

There's an excellent article on the Huffington Post website, written by Mark Hyman, MD, regarding the reliability of medical studies and the resulting supposedly 'Evidence Based Medicine'. It not only warns against trusting media reportage of health and science, but also tells you why you should do your own homework when it comes to trusting recommendations regarding prescriptions and treatments, and how you can better assess whether a particular treatment is one you want.

This information applies to everyone, whether they have cancer, diabetes, heart disease, a sinus infection, or are considering whether or not they want to take the highly marketed Seasonal Flu/H1N1 combination vaccine. So please go read it, and mark it in your Bookmarks folder for future reference.

While you are at it, read the article mentioned (and linked) therein, written by Marcia Angell, former editor-in-chief of the New England Journal of Medicine. It's a somewhat more technical explanation of the issue, and very enlightening.