Annual Summer Blog Challenge Accepted

I’m a little late to the party but still want to participate in Nancy’s Point’s Summer Blogging Challenge!

See my participation answers for 2015 and 2016:

OK, here we go, answers to Nancy’s questions:

  1. Share anything you want about your cancer diagnosis (or your loved one’s). Share your age, cancer type, stage, when you were diagnosed, family history (if any), your reaction, how you learned the news, or whatever you’re comfortable sharing. 

I went for my first ever mammogram in August of 2010. My maternal aunt had just been diagnosed with Stage 3 breast cancer. Her mother (my maternal grandmother) and aunt had had breast cancer as well. My grandmother was diagnosed with it as she was dying of heart disease, so was never treated for her cancer. Given that both my aunt and mother are on medications for blood pressure and heart issues, I always thought that was my bigger risk.

At any rate, that first mammogram received an “all clear” letter. A few weeks later I noticed my left nipple inverting. After a day of going to my new gynecologist (since the one who’d ordered the mammogram had suddenly left her position), and subjecting myself to numerous tests, well….turns out I wasn’t really “all clear”. On October 25, 2010 I learned via phone call I had breast cancer. An MRI ultimately proved it was about 5x6cm, biopsy proved it to be estrogen and progestogen negative, and HER2 positive.

I turned 39 years old on October 29, 2010. Starting in November had chemo, then surgery, then radiation (along with Herceptin infusions, simultaneously). I finished treatment in January 2010. I quit my 60+ hour a week main job to focus on my side hustle, and control my work load. I was exhausted

2.What is the most outrageous thing someone has said to you about your (or your loved one’s) cancer?

Someone told me just to “cut them off”. Ultimately I didn’t do that, I opted for lumpectomy. I’d often thought that about breast cancer patients before my own diagnosis. I found it harder to do when faced with the reality of it.

3.What is your biggest cancer pet peeve? I know it’s hard to choose, as there are many to pick from, right? But what irks you the most?

The sheer unwillingness of most people to understand and/or accept how complex cancer is. It’s not even the fact that people DON’T understand there are several types of breast cancer, not to mention the thousands of other kinds of cancers—it’s the fact they seem to glaze over or look at me like I’m lying when I try to explain E/P negative & HER2 positive. I remember being SHOCKED being in a room of about a dozen other women who had breast cancer, and when I introduced myself and stated my stage and kind of cancer, they had no idea what I was talking about! The nurse leading the seminar had to explain the different kinds of breast cancer. After that I pretty much gave up on local support groups—too uneducated and UNWILLING to learn.

4.What is something you want others to know specifically about breast cancer?

See above. And also, that it is a slog.  A marathon not a sprint. It takes a year or so for treatment and then more time to recover from treatment. It ain’t the damn flu.

5.If applicable, do you worry about recurrence rarely, from time to time or a lot? What is your biggest worry today, right now, this minute?

Always. I especially worry when I feel run down or “off”, like I have been lately. It gets hard to remind myself I’m probably just exhausted because of other stuff in life.

6.Do you feel cancer has made you a better person? Yes, I know this a loaded question. If you do, specifically in what way?

NOOOOOOO! It DID, however, release my inner Curmudgeon. Which is fine.

7.What is your favorite cancer book? (No, I’m not fishing for mentions of mine!)

The Emperor of All Maladies:  A Biography of Cancer, by Siddhartha Mukherjee. Haven’t read many others. I listen to books more than reading these days. #dogwalkerlife

8.Besides your family, where do you turn for emotional support?

Online support more than anything. After all this time blogging, I’ve found my “tribe” of like-minded cancer patients, former and otherwise. A relief.

9.How many cancer blogs do you read and why do you read them?

I don’t know—less than I would like, and less frequently these days. Because I’ve turned to political activism lately, I lack the spoons I’ve had to be as involved in online cancer communities. I hope to return soon.

10.Do you call yourself an advocate? If so, what drives you?

I have a fraught relationship with the idea of calling myself an advocate. I see the work of folks at METUP and how many political and other ties people like that have, and I’m just like, yeah, I can’t do that. I write my blog, I fuss and throw a fit, I muddle along. I accepted the mantle finally last year when I helped bring the #breastcancerrealitycheck tweet storm to fruition. Yes, we’ll do it again this year—working on it now. Also, participating in my local Indivisible showed me how much I learned as a cancer “advocate”, so I realized that yeah, I am an advocate. Ha ha, those cancer lessons—always the crazy stuff with me. Never touchy-feely crap like “life is short, love everyone”. For me always scratchy-bleedy. Just the way I like it.

What drives me? Oh, nothing short of a complete overhaul of the way society thinks about cancer. That’s all, nothing much.  HA!

OK, that is some stuff about me in a nutshell. Hope to back soon with more blogs describing the musings of this cranky-pants cancer patient.



The Thing About the Holidays

Long-time readers might have noticed I don’t write many posts about how to handle anything at any time holidays and cancer. My view on this time of year is a bit….meh.

Oh I like hoopla and stuff to a degree. I love Halloween, as I’ve said here more times than I can count. But the Thanksgiving to New Year weeks are, um, different for me.

Let me back up. As I’ve said a few times on here, I am a pet/house sitter, and before I went full time into this business I worked non-profit, and before that—dun dun duuuuuuun retail hell. Back when I worked retail, as soon as January arrived, the outlet mall—at the beach—shortened the open hours. It was a nice reward after a hectic season. Can I be blamed for looking forward to those quiet winter months a little more than the big red and green holiday that everyone else loves? As a store manager, there were other bonuses—having a less complicated employee schedule to create being one of them. I started the house sitting while still in retail, and yes, my easier, month-long gigs happened as the older crowd took looooong trips in warmer southern areas after the new year began. Christmas was, and is, always hectic—lots of people trying to schedule me for overnight/weekend stays, or for hour long visits on the actual holidays. I work harder on Christmas days than most other days of the year.

One of my favorite films is “Holiday Inn”, with Bing Crosby and Fred Astaire. Bing’s character had a similar complaint about working more on the holiday. He goes on to buy a farm, finds out that it’s hard work, converts it to an inn only open (with a floor show of course) on holidays. The rest of the year he closes up—so he can be lazy. (See more at end of post.) In short, maybe that film is a favorite because I related to Bing’s complaint.

So you see, when other bloggers are writing about resolutions, or handling holidays with cancer, or writing messages of hope at this special time of year, I’m either too busy to notice, or just thinking about my usual curmudgeonly complaints—because in some aspects, these days are not much different for me. Just another day of work—actually a harder day. But I try to be aware—I had a few harsh/challenging posts lined up and realize most people don’t want to read that sort of thing right now. I’ll wait until after the New Year.

The funny little thing about the holidays is, well, I find them a bit disruptive. So much of my life revolves around routine. Not that changing up a routine isn’t a good thing—it is. But when there is illness, well, routine is a friend. As I’ve mentioned a few times, my primary pet sitting client has Chronic Lyme. About 2 years ago I became less pet sitter and more human caretaker. Her day is divided into a schedule of taking antibiotics, probiotics a few hours later, medicines to alleviate the hell these medicines cause the stomach, and eating. I begin at 6AM and it ends at 8:30 PM. My day is divided up into alarms that tell me when to take her meds to her, or prepare a meal. In between times I often take her to appointments, take care of household matters, and yes, care for the dog! I do these things Mon – Fri, so her primary caregiver, her husband (who also has Lyme, but not chronic), can have a break. For me, life is The Schedule.

Here’s the thing: The Schedule doesn’t budge for weekends or holidays. The things that happen, the medicines to take, they happen every damn day. There is no day off.

I remember in 2010, I had my last infusion of The Red Devil that week between Christmas and New Year’s. Needless to say, I didn’t much give a shit about all the festivity around me. I resented the closed doors for the holidays—the disruption of the schedule, because I just wanted to get finished. I was scared and afraid if I missed a day or something, the drugs wouldn’t work, and the cancer would continue to grow. My rational mind knew that it didn’t work like that—this was just FEAR in overdrive.

My point is, disease doesn’t stop for the holidays, and it is a bit unfair to expect cancer patients, or anyone with illness, to just put it aside and join the fun. I don’t mean to be a wet blanket. And yeah I know, life goes on, can’t expect the employees (doctors and all) to ignore Christmas because of all the cancer patients. But disease goes on too—holidays be damned.

I could go on and on. One silly pet/house sitter story related to holidays being disruptive includes how garbage collection day gets messed up, which adds to my list of tasks—trying to find out why a client’s garbage has been ignored for over a week—calling the collection company on behalf of the client and being told since I’m not the homeowner (I didn’t have some account number or password to verify paying customer status), nothing could be done. Because yeah, I’m a random person gaming a system to cheat the company out of garbage collection. Eye roll—everyone knows the best way to get out of paying for garbage collection is to take your trash surreptitiously to an industry or mall dumpster—I see this done ALL THE TIME. It’s a million little stories like this—they actually happened to me—that make me leery of holidays. I just get a longer list of work tasks each Christmas. I learned long ago to not really care much about holiday frivolity, and just get my (extra) work done.

So forgive a Cancer Curmudgeon for the lack of holiday themed blog posts. I just don’t have much to say about this set of holidays. I’m not whining about it—I chose my work and it makes me happy. Having no religious affiliation makes it easier as well. All I’m saying is—hey I get it if people with illness just find all this stuff a bit disruptive. Some folks find solace in putting away their worries for a while during the holidays and that’s fine. For others holidays magnify troubles. Some, like myself, find it to be just another day, and maybe a little disruptive. Personally I look forward to less hub-bub that the boring next few months can bring (so long as we don’t get any snow in my one snowplow beach town).

The work of cancer advocacy will still be there next year, after this short break.

***The other funny thing about “Holiday Inn” is how wildly the Bing Crosby character underestimates the “quiet farm life”. He has a nervous breakdown which inspires him to turn his place into the holiday inn. You see, those cows don’t give a shit about Christmas, they still gotta be milked. So while he sought to escape his showbiz NYC life with 2 floor shows on holidays, he failed to see the reality behind some stupid image of quiet country life. I see some of that in my own area. People retire to this rural beach community and take to lawn gardening with gusto. Then the upkeep of a big lawn (or the cost of having a service do it) lands on their head and they downsize to a senior living community in which that stuff is managed. Mowing the lawn seems novel until one has to do it all the time. They were so blinded about getting out of the hustle and bustle of city life, so blinded by the idea of slower life here, and well, learn a lesson. I’m a “from here” and the “come heres” always marvel at how infrequently they get to the beach upon actually moving to it. Don’t I know it! I didn’t spend one day just lying on the sand in 2016. Maybe next year.



“OMG I’m gonna stick a sign saying ‘Oh yeah, when?’ on their marquee, because they are NEVER gonna open!”

What caused my childish outburst a few weeks ago? A fresh fish store that was supposed to (re?)open this summer, and failed. All summer long the owners put little phrases on the sign in their parking lot near RT 1. Stuff like “We swear we’re opening soon,” or “Summer 2016!” It was October and the new fish market was so NOT open.

Of course I was being silly–I work in a resort area, I was driving my Lyme patient to a medical appointment on RT 1 which runs parallel to the Atlantic, and there’s a fish market like every two minutes. In short, I got choices and NO reason to get so annoyed about one silly place—other than I saw the sign nearly every damn day.

It was just that the constant sign updates annoyed me. I wanted to challenge their little missives about opening soon. And I wanted to do it right on the lying signs rather than making a bitchy Facebook post that would not matter to the majority of my FB friends. My why-aren’t-you-open challenge needed to be right in their face, in everyone’s faces, as they motor down the highway!

My fuss about signs one sees while driving on the road triggered a mild discomfort in my Lyme patient. She’s a staunch anti-Trump liberal, as am I, though at that moment it wasn’t my big problem. With my crazed outburst we again, for like the millionth time, talked about how wrong and illegal it would be to mess with Trump/Pence signs in residents’ yards. And as I’ve stated many times, I live in a rural, red, area–so those signs were just everywhere. We talked about, again, how wrong it is to violate personal property or at least stuff on personal property.

All this made me have a small flashback to my early blogging/post-treatment days. I’m sure I’ve made some offhand remarks on my blog here (and elsewhere) about my desire to just either pull off or deface any of the pink ribbon/rah rah/find-the-cure ribbons I saw on cars. I thought it would be great if some covering/addendum sticker with a message would get created. Like a “what about the women’s lives” sticker I could stick next to those damn “Save the ta-tas” stickers. But duh, again, personal property. So I practiced, and still practice, restraint.

I am “mostly” beyond that now. I’ve written about the wince-inducing run-ins with the stickers tho’ (see 365). I still have to work at suppressing the urge to deface those stickers, but it is less difficult.

I’ve had to work harder at restraint to not deface the Trump/Pence signs, especially when I see that others have already done the work—rare in this rural red area in which live and work (the states in which I live and work, Maryland and Delaware respectively, were blue on the maps, but only because of the metro areas, not the Delmarva section where I am).

Yes, I’ve tried to restrain myself from talking politics on this blog (as mentioned in my first 15 Things). I will continue to do so, but it will be more difficult. You see, with my cancer, my health, and my economic situation—the personal, the cancer personal, has become political.

I’ve shared very little of my economic situation here because I don’t think it is anyone’s fucking business but mine. Suffice to say as a self-employed, VERY small-business woman, I don’t make a great deal of money and rely on those subsidies. I was happy when Trump was the candidate because I thought with his outrageousness, he would never be elected. Good, I did not want Republicans with their constant tries to repeal the ACA, in power. See, it isn’t just him that is scary; it’s Paul Ryan and all the other creeps.

And here we are, and ACA is likely on the chopping block. I’ve read all the think pieces, listened to all the whiny podcasts about “what went wrong” and “what can we expect”. I’ve no faith in the “replace” end of the headlines. I still have fear. I face financial disaster. If I experience recurrence, I cannot afford much; I am of the mind to just not try any treatment. Why leave my parents in a debt they could never re-pay? These are the terms in which I think now.

I’ve been depressed since the election. I can tell. I see something that would normally interest me and think, “WTF does it matter now?” I have no sense of humor or fun. I care about very little. Lately I’ve begun to force myself to engage a little, get out of my head. But my anger and hurt is still so, so great.

On November 9 I wrote a very awful post that obviously I did not publish. It was filled with the blackness that still threatens to fill my heart. Let’s just the say the calls for reconciliation of our nation, the calls to listen to each other rather than shout, that shit don’t reach me. I’ve lived my whole life among the type of voter that the liberal elites are trying to finally understand now and I know they won’t listen or care. Unless my kind of disaster happens to them, and even then, they might still not “get it”.  So my empathy is at an all-time low right now. Of course, as you can tell from that statement, I am just as unforgiving of the “liberal elite” as well. I wanted to spit nails at Garrison Keillor’s post-election WaPo essay with the “let them (the poor WWC in flyover country who voted against their interest and might not get what they bargained for here) lie in the bed they made” attitude (please tell me it was satire). I get the point, but I lie in the bed too—and the bed is not of my making.

Perhaps I was a fool—the personal was always political and I was silly for thinking I could keep it all separate. I don’t know. I will try to practice restraint when it comes to politics here on this blog and on other social media. But I make no promises.




Unnecessarily Pink

My entry into the #WhyIsThisPink fray is a bit different but important to me. I get that most submissions are the silly, pinkwashed items created simply to fatten the bottom line of corporations using the color to get some goodwill from mostly female shoppers. So why have I chosen to submit here a picture of the cancer center where I was treated, all aglow from the soft pink light shining on it for the month of October?


I’ve ranted about this in What Do You Mean There Are OTHER Kinds of Cancer Besides Breast?!–three (3!) years ago (but this picture was taken only a few days ago). Here is what I said about it then:

I do not understand the need for breast cancer awareness…at a cancer center, for crying out loud. A building that exists as a place to treat cancer patients is the epitome of all cancer awareness. Thus, a pink light becomes overkill, a pink light becomes the favoring of patients with breast cancer—their lives? their money?—over all other cancer patients, a pink light becomes the shoving of a cause down many gagging throats.

I still hold the same opinion. Yes, businesses selling alcohol, deli meats, and cosmetics (all things that might increase cancer risk), are worthy of calling out. But a cancer center bathed in pink light–a center that does NOT use other colored lights in other months–is far worse to me.

No, I’m not flirting with conspiracy theory here–this isn’t some Big Pharma/Medical Industry-is-withholding-the-cure-because-it’s-more-lucrative-to-keep-cancer-patients-in-treatment tinfoil hat kind of thing. I revisit the medical industry ethics as I’ve done before in Medical Obligations and SELL!. It is important to keep in mind how hospitals/cancer treatment centers sell their services with some of those questionable messages: “your cancer can be an opportunity for personal growth”. Or the how the existence of breast care ONLY facilities make breast cancer a proxy for all of women’s health, when we all know heart disease is the actual number one killer of women, with lung cancer coming in at number two. Medical institutions emphasizing breast care to play into fears of women rather than correcting those fears (to get their money?) is tantamount to medical misinformation. And the result in me is even more mistrust than I already had.

I’m aware some medical professionals object to being called health care providers, insisting they are not mere service providers. But I think it is important for people (especially in the US) to keep in mind that we do indeed purchase care, and it is costly. To remove the monetary element, as if talking about money is somehow gouache when it’s about “saving lives”, this is just wrong. Patients and “providers” alike need to get over it. For me at least, the financial aspect of cancer is a big part of the ongoing stress of cancer.

And I reiterate, a pink light on a cancer treatment center just screams out to me this message: so many women, so much breast cancer, let’s lure them here, we need those customers, whoops, we mean patients. Always remember, we are both of those.

That’s the money side, the pink-for-profit side, of my entry into #WhyIsThisPink. But of course I have more.

What really bothers me about a pink-lit cancer center is that it reinforces how Pink has become such a Godzilla that all other cancer patients are feeling ignored and angrier with each passing year. I’ve noticed an increase this year (keep in mind this is just my perception here) of angry reactions when we criticize the perky Pink. Or even in pieces that do NOT criticize Pink, but rather embrace it. “What about X cancer?” inevitably pops up.

I can understand this anger to a point. As I stated in the above referenced blog post:

This is what Pink has come to; some perceive it as edging out absolutely every other disease and cause in an obnoxious way, and one’s perception is his or her reality. It is not exactly clear who these patients hold responsible for all this shoving down of the throat. The pieces I’ve seen and read do not seem to differentiate between products with ribbons on them (the kind that claim to send a few pennies to a charity or the ones that just have a pink ribbon with no such claim), pink parade-like races, or people wearing anything from tiny pink ribbon pins to head to toe pink-logoed ensembles. Perhaps it appears all the same to the very frustrated.

I can understand how ungrateful we must sound when we criticize all the Pink crap. But my understanding of this has developed a limit. (For starters, I again refer to Burden of Gratitude.) The other day I actually saw someone ask in a comments section “why does breast cancer get all the attention?” Really? The concept that there is no such thing as a dumb question is a lie–THAT is a dumb question. Breast cancer gets all the attention because sex sells, and well, boobies. Anyone who does not understand that clearly does not understand the concept of advertising and that is inexcusable in the 21st century. Grow up.

I’ve said before that awareness is a two way street. All the corporations and people drenched in Pink, making breast cancer sexy and cute in the name of “awareness” need to become AWARE of the unintended consequences, which is the impact on other cancers. That would be the resentment, the ill will that is now becoming apparent from advocates of other diseases. Yes, I realize not ALL advocates display this resentment, but it is there, and deserves acknowledgement. And it isn’t just the Pink pushers that should be mindful of what is going on. I have voiced before, and do so again, strenuously, that resorting to the comparison, the “what if everyone made X cancer sexy” is a tone deaf and insulting method. Some cancers/diseases are so ignored, that many would welcome ANY kind of attention. Just as it does for some members of the breast cancer community, the “any awareness is good awareness” point of view rules.

Now, of course, I think that viewpoint is wrong-headed.  I am merely acknowledging how tone deaf that particular comparison comes off when breast cancer patients, with our “first ribbon problems”, drag out the “let’s make X cancer sexy” cliche. But here’s the thing: I’ve seen so much in the way of knee-jerk reactions this year–and very little listening, very little effort to understand the many well thought out arguments we make. It is very easy for advocates to snap, “X cancer should be so lucky, look at all the money/attention breast cancer gets”. It is time for all awareness, not just breast cancer awareness to grow up, to become savvy. The issues of unjust fund allocation to metastatic breast cancer has been explained time and again. The issue of how so many businesses slap a pink ribbon on something and donate very little or even nothing, has be explained repeatedly. The theory that all this rah rah visibility has “cured” breast cancer so that it is a “good” cancer has been debunked thoroughly. Yet, these issues must be re-explained each October. And it seems rather than actually reading/listening/comprehending, all I see is knee-jerk reactions “stop biting the hand that feeds and pay attention to X disease.”

Maybe we ALL need to stop and take a breath and have some kind of discussion in which a side is presented and another side is not allowed to respond for a few minutes. That old adage about listening to respond rather than to understand, or that idea that 51% of communication is listening (NOT talking), these things are true. The problems with Pink are being explained, thoroughly, carefully. But we don’t seem to be getting anywhere.

I guess this is why I have not been able to write a post in a few weeks. It is difficult enough to explain The Way Things Are In Pink CancerLand during the year; in Pinktober it seems impossible.

I return to my #WhyIsThisPink submission of a cancer treatment center bathed in pink light–an insult to the patients with other cancers who are also treated there. We’ve got to move forward and evolve in all disease discussions. That pink light on a cancer treatment facility is blinding everyone. Turn it off.


Frame of Reference—The Disease Olympics Part 1

I first remember hearing the phase “the Cancer/Disease Olympics” during that fracas involving Pancreatic Cancer Action’s “I wish I had breast cancer” PSA back in 2014. I wrote “Want Attention? Just Say Breast Cancer” in response; and included in that blog post is a link that will take you to the video, and more commentary (it reflects my own views; I urge you to research other views your own self). I remember that whole episode got really nasty; I even heard a few people sent death wishes/threats to the pancreatic patient who uttered the line. She did die not long after that, if I remember correctly. Just proves how quickly things get out of hand  especially when a subject raises passions.

And what subject is that? Disease/Cancer comparison and competition. I think the “official” definition of Disease Olympics is the competition for limited funding between advocates for diseases: to “win” increased funding for one disease means funding for another decreases. But I think in a more general way Disease Olympics can refer to the game of “who has it worse”, and research funding is just a piece, a large piece, of that picture. I’ve been sitting on a post about all this since early 2013. Two things happened back then: 1) A breast cancer patient I followed on one social media outlet wrote something so upsetting about being competitive with her cancer that I took a hard look at myself and have been doing so ever since, and 2) Journeying Beyond Breast Cancer wrote a wonderful piece asking Is There a Hierarchy Among Cancer Survivors  (read it now, especially the comments, which are the crux of the discussion!). I kept writing about these incidents off and on, and it has now grown to three parts—this is the first part. I’ve been sitting on the post not only because it grew so unwieldy, but also because it is an ugly subject and I have some ugly confessions to make. I want to be completely honest, and as awful as this topic is, avoiding it won’t make it better—not saying conversation about it will either, but, I’m trying anyway.

The more I wrote about it, the more I realized that the comparisons are present even when those doing the comparing don’t think they are doing it, or rather they don’t know or understanding exactly the things they are comparing. For me the worst compare/compete stories are within the breast cancer community. That’s the third part. Slightly less awful are the comparisons/competitions between cancers—as the Pancreatic Cancer Action story shows—and between cancer and other diseases. That’s part two, and it will not be easy to write or read either. But before I started going into all those areas I had to write about a realization I had while considering comparison from as many angles as I could.

I cannot condone the competitive aspect at all. But when it comes to comparison, I do pause. Comparison can be useful, if careful. The most obvious example, at least in my experience, is the fact I tended to seek out other cancer patients with the most similarities—as in those HER2+, since I seemed to be an oddball in an estrogen-based cancer world there for a while. That was the biggest issue for me. Other aspects, like finding others at Stage 3, others who had a lumpectomy, not a single or double mastectomy, others who did not reconstruct, others NOT BRCA positive, and of course, others in my age range—all those things I sought out as well. All those aspects have become less and less important as I’ve progressed away from my diagnosis date. Views and attitudes about positivity and the bullshit around cancer have become waaaaay more important to me. It was just in that first rush of dealing with treatment, of trying to grasp what the hell was going on, that I desired to find people with the most similarities. I still have a habit even now of paying more attention to such silly aspects; it is not that I do not care about, say, Triple Negative cancer, it is more like—cancer is so damn complex, it’s hard to wrap my head around it all sometimes. The bottom line however, is to not let those details cloud the bigger picture, the commonality we share.

That may sound a little hippy-dippy, airy-fairy coming from a Curmudgeon, but it is true!

I will go so far as to say my cancer experience has helped me in my current line of work. As I’ve mentioned here on this blog and other places, I am a pet sitter, but that job turned into caring for a primary client with Chronic Lyme. So I’ve wandered into so home health care tasks in my job. Things like hooking up IVs, administering medicines, keeping a strict schedule (know that old nugget about nurses waking you up in the hospital to give you meds? well, I understand the need to adhere to a schedule no matter what now), paying close attention to dietary restrictions—heck, even cooking—I do all these things now. And yes, they are easier to do BECAUSE I went through the cancer experience. In short, I now appreciate the damn infusion machines that I hated so during chemo. Having to set the drip rate on an IV manually, using my eyes and the metronome app, well, it got tricky for an impatient brat like me. Argh, medicines requiring a slow drip rate are THE WORST!

It wasn’t that I relied on my cancer experience to say, “Oh, I’ve experienced that, no big deal!” That would be awfully dismissive. No, it was more like, “Yeah, that happened to me, it sucked, now how can I apply my gained knowledge here?” Having the frame of reference of major illness and the operations of medical industries has helped: I was surprised and pleased to find the infectious disease center provided materials similar to what I was given at the start of chemo. Was I troubled by just being in a medical facility, by having these upsetting memories? Sure, but at the same time, I was entering into the role of caretaker in another frightening illness situation. Having that frame of reference, experiences to extrapolate from, it was only helpful. Being able to say, “oh yeah this is like that was for me,” made me more efficient, and not too rattled.

It is so NOT about one upmanship.

So is there an undercurrent of one upmanship, or maybe one downmanship (since it’s not about who is better, but who has it worse, right?) in diseases and patients? If so, can it be resolved? No, but I still think it should be discussed.

Has using comparisons ever been helpful for you, to help you understand parts of your illness?


Since I’ve often spoken of my love of certain kinds of music, including hip hop, it would be understandable if you saw the title of this post and thought I meant it in some lame kind of “word to you mother” way (see post about Vanilla Ice).

But no, I do not. Continue reading “Word”

This Is So NOT My Fight Song

“Rap music is really good when you’re traumatized” –Kim Gordon, formerly of Sonic Youth, author of “Girl In A Band”

I begin this post with an apology of sorts. I am not trying to make fun of or otherwise criticize anyone’s music preferences. I’ve been on the receiving end of that and know what it is like. But at the same time, I care very passionately about music, as a simple poke around this blog will show. I mean, hello, I got the Red Hot Chili Peppers’ band logo as a tattoo instead of nipple reconstruction (see page)! So, my preferences are going to come out. And so will my dislikes—which is putting it mildly.

Continue reading “This Is So NOT My Fight Song”

Institutional Knowledge

I’ve been trying to put my finger on the word or phrase to describe the accumulation of common, shared knowledge that comes to a cancer patient participating in one or more social media platforms. I hesitate to use “institutional” when it comes to breast cancer, because it implies the normalcy, the rite-of-passage vibe that surrounds breast cancer, and I hate that—I do not want breast cancer to be thought of as “normal”, as just another step in a woman’s life. It should not be a step for anyone. But institutional knowledge seems the best fit.

Continue reading “Institutional Knowledge”

Harm Part 2

I wrote Harm a few months ago and I thought it was all I had to say on the subject of the impacts of viral sensations and celebs touting their woo woo medical beliefs. Ah, when will I ever learn that for me in CancerLand, the case, whatever case, is so rarely closed. Sigh.

A few months ago a work-related acquaintance asked me about some clinical trials and/or info about more aggressive treatments for her husband with stage 4 brain cancer. The place where he’d been treated, incidentally where I had been treated also, had sort of written him off—nothing more they could do, get affairs in order, etc. This woman was having trouble getting cooperation in handing over his medical records so she could send them to bigger, more experienced places (read: less small town/in the boonies places) so they could get more aggressive or experimental treatment. (I’d had similar problems getting them to hand over my images when I was still a patient with them—I’ve since had to transfer to another medical system due to insurance changes on my part). I did what I could, asked for some help on FB, Twitter.

When I ran into her some time later, her husband was doing great! As well as I can understand her, yes, her husband did visit another medical facility in a less Podunk place than our town, but he had also started some herbal supplement/woo woo/beat cancer with blueberries stuff. When she told me what it was (and I’ve since forgotten—some herbal thing) I went to the website she told me about it, and it was VERY woo woo. She also talked a bit about B17—which I Googled and saw immediately it is touted as alternative cancer treatment. I backed away.

Now, as I said in the Harm post, people can “do” cancer however they wish—I guess. I have trouble when it comes to the proselytizing about woo woo treatment. I shy away from all the crazy sexy cancer type websites touting some vitamin, whatever drink, herbal stuff, and assorted other, uh, crap, claiming to cure/prevent cancer. No, I’m not some big fan of Pharma’s prices, and sure I get it, there are some invented issues made just to market some drugs—but there are many drugs that exist, because, you know, THEY WORK. And conversely I’m not saying eat bacon and ice cream and stay on the couch 24/7; make healthy choices, duh, but recognize those things are not a guarantee of illness-free immortality.

It’s about balance, not embracing extremes, and about seeing the big picture. And most of all, not blaming cancer patients—which I think is a result, indirectly and directly—of some of the eat right/don’t smoke/exercise lecturing that goes on.  I wrote about that ages ago and still mean every word of Did You?

I encountered this acquaintance again a few days ago, and of course I was happy to hear that her husband is doing so great that he is planning to return to work. Quite the change, she crowed to me, from early this year when he was told he had 6 months at best. Yes, he’d gone and had treatment at a big city facility, but she is giving the B17 all the credit. She launched into a lecture about how doctors “never” talk about nutrition, are just drug-pushers, aren’t even taught more than some limited number of hours—out of years of schooling—about nutrition, vitamins, etc. She also began talking shit about the local cancer center—again, where I was treated as well—and their initial “6 months” pronouncement, how she does not trust the doctors, the medical industry and so on. She’d “read some stuff about it”.

I confess I lost my ability to smile and say how nice it is her husband is doing better. I just kept quiet as she continued chatting with our mutual client. This was a tough spot for me and I think I behaved poorly here.

Why is all this so hard for me? I, my own dumb self, have been often frustrated with the local medical system, which failed to correctly identify the big white area on my first ever mammogram as cancer, dismissing it as density (see What Is My Psychological Damage for the whole story there). I was correctly diagnosed 5 weeks later at another local hospital system (near my home, whereas the mistake was made, and I was treated at, the cancer center near my work, an hour away from home). I have lingering doubts about the general capabilities in diagnostics in the area—and I’m not the only one, and it isn’t just a cancer issue—according to horror stories told to me by my clients. But on the other hand, my treatment was exceptional—damn near cutting edge in that my oncologist was forward thinking enough to get me into chemo before surgery, which apparently is “new”—ugh, rolling my eyes, read Maybe Mayberry Ain’t So Bad for the whole story there.

I guess what I am saying here is that, yes indeed, the medical industry can use some improving. I get very annoyed when I read some blog posts on KevinMD where some professionals get very defensive about labeling us patients vs customers, the “satisfaction” metrics, and some interesting discussion on doctors firing patients who make poor diet and exercise choices, the responsibilities in that whole issue. But just because I disagree with what I read there does not mean I’m ready to dismiss the whole profession as stupid and evil, and start treating major illnesses with vitamins and herbs and nutrition, rather than medicine. Sure I would think twice about getting diagnosed around here, and I know how to advocate for myself better now. I get very upset when the discussions begin about patient satisfaction measurements being dismissed because some asshole patient gave a low rating because they did not get some stupid amenity like food or TV. Stuff like that is so stupid it should not be discussed, and patients should be told such complaints will not be considered. But, yeah, I’m a patient and I am paying for something (yes, my insurance paid, which I and my employer had paid into), so I am also a customer and my metric of satisfaction is getting a correct diagnosis. Of course learning cancer did not make me “happy” or “satisfied”, but being able to trust a professional to find a potentially deadly disease in me so it can be treated—well, that is a kind of satisfaction. I sure as hell would be unsatisfied if I died due to negligence, so to speak.

But speaking up, that is the point—to make it better, to improve. Not just chuck it all and swallow vitamins and kale. And then make videos or write books, as so many hucksters have done, touting alternative methods. People have these “beliefs” about cancer that seem unrelated to evidence (again, in Harm I discuss my queasiness about “beliefs”). If it works for some, as this acquaintance of mine so clearly believes, OK, fine. But what happens now, every time she opens her mouth to anyone who will listen? What is the harm to society in general when these conversations occur? People love anecdotes more than stats; numbers are boring, drama is better. And people love the underdog success story. People love to point to Stallone writing his own movie and getting successful; or the actress discovered in a restaurant—those one-time incidents—and believe it can happen to anyone, never mind the hundreds of others who write their own films or hang around hot spots hoping to get the big break, and they never do. It is the same in cancer. How many people shun the medical industry and die, while the one person who claims to have meditated and kaled the tumor away gets help up as the example, THE WAY?

I think again, grimly, about the “think positive” culture. Here’s an anecdote for all—an awful one. The woman who started the under 50 with cancer support group where I was treated was a sort of friend of mine—before either of us got cancer. She was a top volunteer for the non-profit I worked for in the latter half of the previous decade. She got two kinds of gynecological cancer, two separate cancers—not a spread, to be clear. She was treated and was a couple years out when I got diagnosed. She did the chemo etc. thing, but was into some of the woo too–integrative medicine. She gave me some acupressure bracelets to take the edge off of the nausea that first awful month of the Red Devil. She suggested some mushrooms from the health store which help prevent recurrence. She sat with me during that first infusion, suggesting I visualize the medicine running through my body, fighting the cancer. I never did that, I slept all the time. She was the poster child for the notion that keeping a positive attitude helps “beat” cancer. She moved away toward the end of my time in treatment, but she kept in touch with us girls in the support group. Not long after I completed treatment, she had a metastatic recurrence of one of the cancers; I can’t remember which. She died on a Thanksgiving Day. Moral of the story? The think positive person died, she could not rah-rah-fight cancer away. The grumpy Curmudgeon who won’t or can’t visualize, who won’t be rah-rah positive, who takes only a few vitamins at the behest of a friend/client, well, I’m still here for now. Not that I’m unhappy to have “survived” but this anecdote fills me with bitterness, even now, years later, as I write this. Yes, it an anecdote that supports my “belief” but it fucking sucks and I hate it.

Of course I do not wish my current acquaintance’s husband death just to prove the woo woo does not work. And I’m not going to get into some argument about how maybe it was some of the medical treatment working—I’m not equipped to do that. I will try to be better at being glad for them, and to just not impose my idea of how to do cancer on others.

Perhaps I should argue with her, but what would be the use? I doubt I will change her mind. On this blog and on my Facebook page I can say hey, do cancer your way, I don’t agree, and I can control the amount of woo appearing on my page, and I can just NOT go to the woo pages and sites. But how do I navigate in person disagreements? As I’ve mentioned before, my aunt who was diagnosed a couple months before me is a Pink, rah-rah, save the ta-tas supporter. We just never discuss cancer. I cannot. I would lose my shit. So I guess the thing to do is to smile, express happiness that all is going well, then leave the room.

But I am uneasy this week. Uneasy. I hope to improve how I handle this, because it isn’t going away anytime soon.

What’s Good for the Cat Is Good for the Cancer Curmudgeon

I was slow to the social media thing in my cancer career. No, scratch that, I was slow to the social media/internet in general. I mean, in the 2000’s I used the internet for work, but nothing else. I got my first laptop really late–2005–and just so I could work while away from the office. So it was not until I completed treatment and quit my 9 to 5 that I really USED the internet the way it was intended–to watch cat videos! To share silly memes! Oh yeah, and to find others who shared my disgust with breast-cancer-as-pink-party.  I began my cancer blog late 2012, around the same time Grumpy Cat started to get popular. So I’ve always felt a little kinship with the cute little critter–partly because I began living on the internet so much and she was everywhere, and most importantly those “I had fun once it was awful”-style memes featuring her.

Now, before I continue, I should say I love Grumpy Cat and understand she is not really grumpy–the “look” on her face is a result of dwarfism. But I love the hoopla that surrounds her–messages of holiday joy interrupted with “NO”, or the aforementioned “I did xyz once, it was awful” line that pops up a lot. I love the attitude, her face–the whole grumpy she-bang.

Well, of course I do. I’m a grumpy cancer patient! Continue reading “What’s Good for the Cat Is Good for the Cancer Curmudgeon”