It’s Personal, and One Day Is Not Enough

Today is Metastatic Breast Cancer Awareness Day, the one day in this month of pernicious pinkification set aside to acknowledge the Elephant in the Pink Room. I don’t know about anyone else, but I’m aware of MBC every damn day of the year…

Because I have this list…

Five years ago, shortly after I was diagnosed, I found my way to an online peer-support forum for people with breast cancer. It’s no exaggeration to say that it saved my sanity. Alone, at home, often in the middle of the night, enduring and trying to recover from treatment, the women and men I met on this forum were always there, sharing bad jokes, outrage, anxiety, as well as affection, cogent advice, compassion, and generosity. One of those forum-friends was Diane.

This was the autumn of 2008, when the fallout from the U.S. and global financial crisis was crashing down around our ears. I was one of the ‘lucky’ ones, relatively speaking. I had a job with health insurance and disability insurance and paid sick time. A lot of my sisters and brothers on the forum were not so lucky. One of those unlucky forum-friends was Diane. The following tells the tale:

“As we watch politicians & bureaucrats argue about the best way to help home-owners keep their homes and prevent millions more Americans from losing their jobs, some of our friends on the forum are living with the real consequences of the U.S. financial crisis. Diane is one of those friends. While she and her husband have been waiting weeks for word on whether they can refinance their mortgage and prevent foreclosure, Diane’s husband was laid off from his job, just one week before Christmas.”

Some of us decided to try to help. I already had a website (for my photography), so I offered to add a fundraising page with a PayPal link for Diane and her family. The above was taken from that page. Within days, we raised over $1400. The money allowed Diane and her husband to pay their bills for the month, including the mortgage, buy Christmas presents for their young sons, and give them time to find a non-profit group that helped them refinance their home. Her husband was also able to find another job.

Eventually, Diane’s breast cancer returned and metastasized. In February of 2010, Diane died of metastatic breast cancer.

A few years ago, the phrase ‘fearless friend’ was coined. I believe that perhaps my late friend and sister bitch-blogger Rachel may have first mentioned it in a blog post. Someone with a better memory than mine (!) might enlighten me in a comment. In any case, it gained a hashtag and quickly spread among those of us who participate in the #BCSM Monday night Tweetchat. A fearless friend is someone who does not have metastatic breast cancer, but who pledges herself to step up and support her friends who do, however she can. There’s a large subset of us fearless friends who have also been diagnosed with breast cancer ourselves but, so far, manage to stay in the land of NED (No Evidence of Disease). I’m not sure how fearless I truly feel much of the time. But for me, being a #fearlessfriend means being a friend in spite of my fear — fear for my friends with mets, fear for my friends who have recurrences, fear for all of us who’ve had this diagnosis, who could develop mets in the future. In another February, in 2012, Rachel died. A week later, I went to her funeral.

There’s nothing quite like soul-searing loss to amplify your feelings of helplessness and futility. You want to DO something, anything, to keep it from happening again. I knew I could keep blogging — and I did keep blogging — but I wrote in a haze of heartache. I so admire the drive and commitment of many of my friends in our cyber-community whose grief over Rachel’s death helped drive them to push harder for real awareness of MBC. They’ve managed to agitate, advocate, go to conferences, write articles, publish books, start groups, raise money for metastatic breast cancer research, enriching and enlarging our e-community. The circumstances of my own life, however, did not permit me to take on any further commitments. But I still wanted to do something. So I offered my geekitude to METAvivor, one of the organizations Rachel most admired and supported, and launched their blog in April of last year. It didn’t seem like much, but it was something. Blog-Admins-R-Us. Please visit our baby. There’s a great post there today, written by CJ, that we hope will be the first of several this month.

As usual, the run-up to the corporate merchandizing field-day known as Breast Cancer Awareness Month started early. As usual, there have been even more execrable, tacky and tactless fundraising campaigns and pink products than there were last year. Some of them truly beggar belief. One of the most idiotic is ‘No Bra Day,’ which happens to be today. Nice timing, asshats. If the saying, ‘there’s no such thing as bad press’ is true, then NBD was a rousing success, since it raised the ire of many of us bloggers, who were not shy about articulating our collective disgust in the blogosphere. My friend the Feisty Blue Gecko summed it up for many of us. Personally, if I go without a bra in public today, I plan to clip my prosthesis on the outside of my shirt. That ought to raise some awareness.

Another friend, AnneMarie, who advocates, agitates, tirelessly kicks butt and blogs at Chemobrain, stumbled upon yet another astonishing fundraising notice this year. I didn’t really want to include the jpg, but you probably wouldn’t believe me unless I showed it to you.

I don’t even know what to say about this myself. What’s the message here? Breast cancer might kill you, but at least you can go out with a smile on your face? Yeah, right. It’s times like this when I wish I were better at channeling Rachel, who would no doubt come up with some apposite snark.

Meanwhile, less than two weeks ago, on September 30th, there was another funeral. It was live-streamed from England. It had been arranged by the long-time partner of another woman I’ve known for five years, whom I also met on the peer-support forum, and later, kept in touch with on Facebook. Her name was Jayne. She was a gentle, unfailingly kind, completely dear human being. Her breast cancer recurred, then metastasized, and finally took her life.

Just yesterday, there was a funeral for Angie Suttles. For fifteen years, she endured breast cancer, reached out to countless individuals and groups, shared her time and her story, and worked as a regional leader for Livestrong. She was known to many of us online, through social media and through her blog. Her son Caleb was kind enough to keep us informed, allow us to participate in a video he created with our messages, and arrange for the live-stream of her service.

Bloody hell. The longer I participate in our amazing community, the longer my list becomes. Some on the list are recent friends, some are friends I’ve known for years now, some are patients I’ve treated over the years, some have been relatives. There are friends who weren’t on the list when I first knew them, but are now. Friends who have died. Friends who are hanging in there, hoping their current treatment will keep their mets at bay. Friends who keep working, at least some of the time, and friends who have a hard time getting out of bed in the morning. Friends in pain every day. Friends who try their level best not to let metastatic breast cancer subsume their identities. Friends who laugh, make art, write blogs, cause trouble, who advocate, educate, kick major ass. Friends who take care of children, parents, spouses in spite of mets. Friends who have lost mothers, sisters, and other loved ones to mets. Friends I’ve met in person, friends I’ve met in cyberspace. Friends I communicate with daily. Friends I love, adore, admire, learn from, snark with, laugh with, share stupid photos of my cats with. Friends I worry about, cry for, rage for. Friends I don’t want to mourn for.

Am I truly fearless? Not really. But I hope I’m at least a kind and conscious friend, and a decent clinician. I can’t always do much, but I can do that. And I can refuse to let fear rule my head and heart. I can speak out and write and draw and make jokes. I can treat my patients with a fuller knowledge of what they might need. And be grateful for how much my life has been immeasurably enriched by every single person on my list. What’s a little fear compared to that?


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Fifty Shades of Pink — and Still No Cure

Really, I don’t even want to be writing this post.

One of the most heart-rending blog tasks I’ve had to do this past week is to re-categorize a few of the links to blogs on my blogroll, to reflect the fact that the women who write them have been diagnosed with mets since I first connected with them in the blogosphere. That stopped me in my tracks. And my list of bloggers with mets keeps getting longer.

It’s no wonder, then, that I’m so sick of the explosion of corporate merchandising known as ‘Breast Cancer Awareness Month’ — aka Pinktober — I resent even acknowledging its existence. But I’ll force myself to post some random observations, a few facts, and some links.

As usual, I will avoid shopping in certain places for the next month. The above collage is comprised almost entirely of photos I took myself on one particularly hideous October Saturday a few years ago, as I ventured forth to do a few errands. If anyone would care to tell me how selling pink Chia heads (yes, I really saw them; they are in the center of the above banner) has contributed to figuring out what causes breast cancer or how to cure breast cancer or how to prevent anyone from developing metastatic breast cancer and dying of breast cancer, do let me know. I’m always eager to advance my knowledge.

A casual friend of mine recently launched a small fundraising initiative with a friend of hers. They are selling tiny pink cat tchotchkes to raise money for our local breast health center and a local breast cancer support organization.

Our local breast health center is a pretty good place, all in all. Friends and colleagues and patients of mine have been treated there. The friend who launched this initiative was treated there. The center has had patient navigators for a few years now. The center welcomes patient feedback about their cancer experience and acts on that feedback. Their navigators bust their butts. One of them had breast cancer herself and I marvel at her energy. I believe very much in supporting local entities, and our breast health center is certainly one worth supporting.

However, I confess that the name of this fundraising initiative made me cringe. It’s called ‘Kitties for Titties.’ I don’t think this friend has read my blog, and if I run into her in the next month, I’m not quite sure what I will say if she asks me to buy a pink kitty. I may be a snarky bitch here on the blog, and I’m often snarkily bitchy WITH my friends. But I really try not to be snarkily bitchy TO my friends. Most of my friends feel the same way I do about Pinktober, but clearly not all. The ones who don’t represent a bit of a dilemma. On the plus side, I’m pretty sure that most, if not all, of the money raised, which is $4 per kitty, is being donated to the stated causes. Certainly no one is getting a six-figure administrative salary out of this endeavor, like certain other Pink Pushers I could name. But, well, they are pink kitties. Little chubby kitties. Sort of like ‘Hello Kitty’ kitties. When you see them, you’re supposed to think they’re cute. So, I’m not sure what the message is, really. Because, you know, I’ve always thought that breast cancer is way un-cute. And then there’s the titties part. One of the euphemisms for women’s breasts that I hate most is ‘tits’ or ‘titties.’ Not sure why. Maybe it’s because most of the times I’ve ever heard it used, it’s been uttered by asshat, objectifying slobs, fantasizing about snagging a quick lay.

I know, I know. What is my problem, huh? I mean, normally, I don’t object to trivializing a life-threatening disease, not to mention the women’s body parts affected by that disease. And surely it would be gauche to point out that a large percentage of women treated for breast cancer no longer have either one or both of their original ‘titties,’ because, well, they were more interested in saving their lives than keeping their diseased breasts. But, hey, that’s probably just me feeling like Grumpy Kat.

And then there’s the current kerfuffle playing out in Congress. Basically, the Republicans in the House of Representatives want to repeal the Affordable Care Act in exchange for passing a stopgap funding bill to raise the debt ceiling temporarily so that the U.S. can keep paying its bills. Meanwhile, some of the initial provisions of the ACA are in the process of being enacted, with lots of attendant hyperbole, hysteria and misinformation promulgated by those who oppose it.

So, in response to the naysayers, I would just like to point out a few things. The ACA abolishes the practice of denying health insurance to people with pre-existing conditions, and cancer, last time I checked, is regarded as a pre-existing condition. So, I’m all for ensuring that I and thousands of other American citizens can get and keep our health insurance. Also, people with metastatic breast cancer and no insurance can get Medicare coverage, even if they are not 65. Several diseases, including cancer, are included under the ‘compassionate allowance’ provision for Medicare coverage through the Social Security Administration, through which people with mets can also apply for disability income. It’s good to know that there is still some compassion left in Washington, D.C., despite Congressional evidence to the contrary.

Meanwhile, back in the land of the Pink Peril, there is still only one day in Pinktober set aside to acknowledge metastatic breast cancer. It’s October 13th, for those keeping score at home. That’s one day to acknowledge that, worldwide, about 458,000 women and men are still dying of MBC every year. One day. Pathetic.

Maybe it’s me being Grumpy Kat again, but this points to the central problem with Pinktober. It seems to me that the main reason why the public needs to be aware of breast cancer — or any cancer, for the matter — is because people die of it. But awareness of breast cancer is so last century at this point. What we need is cogent, accurate awareness about breast cancer, awareness about its causes; awareness about the continuing inadequacies of mammography, still the most prevalent screening tool used to detect it; awareness about the life-altering and lifelong collateral damage caused by getting treated for breast cancer; awareness about how and why it metastasizes and how to prevent it from doing so; awareness about the financial, physical and emotional toll that all cancer patients live with forever; awareness about what it means to live with metastatic breast cancer and to wonder how long your current treatment will continue to keep the beast at bay. None of this is cute, pink, fluffy, sexy, or ultimately even about losing our breasts.

By my criteria, most of what passes for breast cancer awareness during the month of October scarcely passes muster. Much of it is pure baloney, or worse, disseminates misleading statistics and woefully inaccurate information. Most of it is an industry, a corporate merchandising opportunity, that provides little tangible help to those who are dealing with breast cancer. And still, in the U.S., despite the fact that 30% of those diagnosed with breast cancer will develop metastases, only 2% of the millions raised for breast cancer research goes to researching metastatic breast cancer.

And that much-vaunted cure certain folks have promised? Nowhere in sight.


If I listed every pertinent link I could think of, I’d have an encyclopedia. So, here’s a few. Also, check out my blogroll if you want the unvarnished truth from those who live with mets.

Breast Cancer Action
Breast Cancer Consortium
Living With Metastatic Breast Cancer — A Global Survey
Metastatic Breast Cancer Network
METAvivor.org and METAvivor’s blog
National Cancer Institute Clinical Trials Search Tool

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Our Friend, Vitamin D

Sunlight is not enough.

It’s that time of year when I endure my run of doctor visits, lab tests and diagnostic imaging, hoping that once again, NED will be my companion when they’re all done. I just picked up a copy of three pages of lab results, all good, and one of them prompted me to dash off a quick post.

Research into Vitamin D has been prolific in recent years, with results that have implications for many of us. Vitamin D helps us absorb calcium and other bone-building nutrients. Inadequate Vitamin D forces the body to steal calcium from bones and thus increases our risk of fractures and osteoporosis. The most readily available source of D is from sun exposure, but weather, geographic latitude and the risk of skin cancer all limit how much we can get from the sun. Some studies have confirmed the fact that many if not most of us in North America do not get enough D, because adequate sunshine is just not available. A cogent summary published by Harvard Health reports on these findings. Not only can we not get enough D from sun exposure, but the old minimum daily requirement of 400 IUs daily is inadequate. Most of us may need at least 1,000 IUs daily to keep our bones healthy.

More than just bone health.

Bone health is crucial for all of us, but it’s not the only reason we need adequate D. According to the Harvard piece, “it’s active in many tissues and cells besides bone and controls an enormous number of genes, including some associated with cancers, autoimmune disease, and infection. Hardly a month goes by without news about the risks of vitamin D deficiency or about a potential role for the vitamin in warding off diseases, including breast cancer, multiple sclerosis, and even schizophrenia.” Multiple studies, summarized in the International Journal of Health Studies, have reported an association between deficient D and a higher risk for developing “obesity, diabetes, hypertension, depression, fibromyalgia, chronic fatigue syndrome, osteoporosis and neuro-degenerative diseases including Alzheimer’s disease. Vitamin D deficiency may even contribute to the development of cancers, especially breast, prostate, and colon cancers.” Even in the Middle East, where inadequate sun ought not to be a factor, studies have found significant D deficiencies among men and women.

Several studies in particular have demonstrated an association between low D and increased risk of breast cancer, particularly in premenopausal women. It was the combination of reading these studies on breast cancer as they began to emerge a few years ago and my mother’s osteoporosis, causing severe spinal deformity that eventually contributed to her death, that prompted me to start taking 1,000 IUs of D3 a day. After six months of this self-imposed regimen, I asked my primary care doc to test my vitamin D level, accomplished by a simple blood test, and was astonished to find that my D was still below normal. I immediately increased it, and now take 20,000 IUs of D3 a week, in the form of readily available D3 gel capsules, which gives me about 2,800 IUs a day. It’s important to take D supplements in the right form. D3 is the one that is most readily absorbable. The good thing about D is that, because it is fat soluble and thus stored in the body, you have the option of taking it daily or weekly, as you prefer. I have been taking my weekly dose for about 3 years now.

Results.

After about 4 months of taking this much D, I noticed that my lifelong struggle with recurring depression abated. For the first time in many years, I no longer had to take an SSRI, and have not had to take one since. Amazing. And without taking calcium supplements, my next bone density scan showed a slight improvement in my bone density. Also amazing.

For women who take aromatase inhibitors, which notoriously can wreak havoc on bone density, having your blood Vitamin D levels checked is crucial. Your doctor should also check your blood calcium level. You need to have enough of both, and infrequently, D supplementation may cause a higher than normal level of calcium, and require you to adjust your supplement level. A normal blood level of D is somewhere between 30 and 100 ng/mL (nanograms per milliliter), and researchers have recommended aiming for a level between 40 and 60 ng/mL. A normal calcium level is between 8.9 and 10.3 mg/dL (milligrams per deciliter).

A review of research on D and breast cancer prevention was published recently in PlosOne.org. This review study found that D’s role in preventing breast cancer for postmenopausal women was inconclusive, but did find that better results were found when D was taken in higher doses and taken with calcium. It also suggests that studies currently underway may yield clearer results.

Research does, however, suggest that D supplementation can mitigate bone loss caused by aromatase inhibitors. And a recent review study reported that, among several different options, D supplements were the one option that did help decrease joint pain among women taking AI’s.

My own labs this year are instructive. I wondered if perhaps my 20K IUs of D3 a week would now be shown to be too much. But my recent lab results showed that my D was nicely in the middle of normal range, as was my calcium. So, I’ll stick to my current dosage.

Now, I just have to get that damn mammogram in a few weeks…

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Five Years Later: Zigzagging Toward Acceptance

Biopsy
“Your biopsy is positive.”

None of us ever forgets when we first heard some version of that phrase. I heard it five years ago today. And I thought it merited my emerging briefly from my blog hiatus to write a post.

Two weeks ago, I saw my primary care doc for my annual physical. Last week, I had a bunch of lab tests, all good. Next week, I’ll be confirming the date of my next mammogram. Then I’ll be going to get it. And biting my nails till I get the results. A few weeks after that, I’ll be seeing my one remaining cancer doc, my surgeon. And hoping we’ll be discussing negative results again and not discussing the need for further tests. NED, I’m waiting on you.

What hasn’t changed.

I still have to be vigilant. I know too much to think that five years of NED means I’m off the hook. I’m still tired. I still find it hard to concentrate. I still have days when I just have to give up and give in and do nothing. I still can’t work full time. I still have pain and problems every day with my right side, my right shoulder, arm, elbow, and wrist. I still have to be careful not to lean over and reach too quickly, so I don’t set off a massive muscle spasm from my right collarbone, through my chest, and down to my waist. The main cause is radiation, which left in its wake a lot of permanent soft tissue damage five years ago this October.

My house still looks more like an archeological dig than a home. The livingroom and the kitchen and the bathroom are mostly habitable. There are piles of things in other rooms, some in bags, some freeform. My bed looks like a bed, and I manage to keep clean sheets on it. The cats like it. The laundry is never caught up, but the cats like that, too. The main thing is that I still have a home. And the plumbing works. And the roof doesn’t leak.

I have managed to mow the front yard more or less regularly this year. The back yard hasn’t been mowed all summer. There’s a fence around it, a high fence, which is good. Keeps out the larger species of wildlife, and hides my benign neglect from the neighbors. And now there are some wildflowers growing in it, things like black-eyed Susans and wild asters and Queen Anne’s lace, poking in around the false indigo and spirea and hostas and columbines I planted before I had cancer. It’s become something of a small meadow. Rather pleasant. The bees and butterflies like it. At some point, I’ll tidy it up. Just not today. Maybe not this summer.

Thanks to e-banking, most of my bills get paid on time. And I still get a paycheck. And I still have health insurance. And I still have my job, the same job I had when I was diagnosed. I’ve had to adjust and decrease my hours around cancer’s viscissitudes over the years, but nobody seems to mind very much except me.

What also hasn’t changed is that I’ve lost friends to breast and other cancers. And old friends continue to be newly diagnosed with mets. And most of my cyber friends are friends who’ve been diagnosed with cancer. And I hate doctors appointments. And I guarantee that I will still have the heebee geebies when I go for my next mammogram.

What has changed.

My social life is a lot more circumscribed. I’m not as spontaneous as I used to be. But I cherish the friends who’ve stayed the course even more.

Making Art with a capital A has taken a decided nose dive in the last few years. I still make art with a small ‘a’ now and then. Art with a capital A requires more energy and money and resources than I have these days. I’m not worried though. I’ve been at it long enough to know that the river hasn’t dried up. It’s still there, whenever I’m ready to dive in again.

My life has slowed down. Dramatically. And I’ve had to let go of a lot. Of necessity. I haven’t liked it much. Some of the letting go has been painful — like letting go of friendships and expectations. But I don’t feel as angry and resentful about it all. My attitude has changed this year, for the better, I think. I seem finally to have come to some genuine acceptance of where I’m at and how I got here. Doesn’t mean I won’t try to change and improve things. But I’ve learned to make small goals, teeny goals, short-term goals, and not to get as discouraged as I used to if I don’t meet them. I’ve learned to stop comparing Now with Then as much as I used to do. Huge, that one. Now is now. That’s all I can deal with. Then is in the past. Tomorrow could change on a dime. I know that very well. And if it does, tomorrow is when I’ll deal with it.

What I’ve learned.

Aside from feeling like I now have an advanced degree in oncology, I’ve learned that I can’t fix everything. In fact, I can’t fix most things. I’ve also learned that it’s much easier to do one thing at a time. And that multi-tasking really is a myth, because I can’t really pay attention to more than one thing at a time. Because paying attention at all is often a challenge. And that finishing small things feels just as good as finishing big things. And that the way to finish big things is to subdivide them into small things.

I’ve learned to be much more forgiving. I’ve learned that I have to forgive myself and others and the ups and downs of life, sometimes on an almost constant basis. I’ve learned to expect to forgive, that it’s healthy to forgive, that it eliminates a lot of needless disappointment to develop the habit of forgiving. It doesn’t mean becoming a doormat or a passive, unfeeling lump. It doesn’t mean putting on blinders to what is wrong or cruel in this world. But it does mean learning to step back from what may feel unforgivable. And it means I’ve learned to pick my battles. I’ll fight the ones I need to fight, but I don’t have to fight them all. I get to help people for a living. Often that means I get to advocate for them. And when I do, sometimes I get things to change for the better. It’s a lot easier to do that for one person at time, and often, it’s a lot more meaningful, too.

It helps that I never said ‘why me?’ when I was diagnosed. When you work as a healthcare clinician, you get over that very quickly. Catastrophe happens, unbidden, undeserved, all the time. I hate that I was diagnosed with cancer, but I never took it personally. I’ve learned to value my passion and skepticism, but to spend them more wisely.

After spending so many months and years feeling not okay, indeed feeling the very opposite of okay, it’s great now to feel just okay. In fact, it’s brilliant. I don’t have to feel spectacular to laugh and love and play and help someone. And when I do, I often end up feeling a lot better than okay.

Here’s to the next five years.

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Posted in: Attitude, Fatigue, Survivorship by Kathi 33 Comments