Month: September 2015

Disconnected. Slog. Resentful.

This October I feel more disconnected than ever from the Pink noise. And yet, I feel more burning resentment than ever, too.

Before I got online this morning and saw all the posts about submitting 3 words to GMA for some Pink crap they are doing, I was already thinking about how the words and phrases about to fill all media are so damn meaningless (just like I thought this last year: Some Word Problems). I saw silly grocery bag (pictured below) with the ribbon and the words “inspire hope”, and all I could think was, “what does that even mean?” I snapped this picture while I was waiting in the checkout line, and naturally my gaze fell onto the People magazine with Jackie Collins on the cover—barf (I am sorry she died, but completely disagree with her views and am so jaded about ALL celebrity cancer stories that I just always want to barf when I hear of them).

What do these words mean? What have they to do with my every day slog?
What do these words mean? What have they to do with my every day slog?

I am so tired of all the slogans surrounding cancer, and even all illnesses. They are so disconnected with the everyday slog that is the very nuts and bolts of treatment. This is why I’ve been especially touchy this year about the showy symbolic activities, such as wearing a bald cap, for “support”. How does this bald cap, or taking off a bra, and then maybe hanging it on a mailbox, do anything for that every day, minute to minute, nitty gritty, SHIT that is treatment?

I don’t write often about my primary client; I take care not only of her pets (since, technically I am a pet sitter), but also I am a secondary caregiver (her husband is the primary) for her Chronic Lyme treatment. First of all, hers is not my story to tell exactly, and secondly, there is so much controversy surrounding Lyme and I am unwilling to wade into it. Chronic Lyme patients will read this and know the everyday slog of which I speak: the IV treatment regime, the schedules, the horrific side effects. Cancer patients will know some of it, and can take an educated guess about the rest.

This is only the tip of the iceberg in describing my daily life. I won’t go into the scary dark places: the reminders of my own experience as the receiver of caregiving, the horribleness of side effects. Just know that the past few months have been especially difficult. I’ve been super busy and often so tired when I finally sit down to my laptop that I can barely read the many posts by my favorite bloggers (my saved links on Facebook and bookmarked web pages to read later “when I have a minute” are now out of control).

When I see “inspiring” slogans on t-shirts and what-not, and smiling crowds in races or on idiot morning TV shows, with those little clips detailing the same old story, I just think—is this the real life? No, it is not.

Patients face disease and treatment alone, ultimately. Yes, good people do lend real support—not the fake, symbolic kind exhibited by head shaving, but real stuff like listening, holding, cooking, cleaning, etc. But no one can experience the nausea, the constipation, the diarrhea, the exhaustion, the FEAR, and so on, for the patient. And people holding up signs in a video clip don’t help me when I have a relapse of cancer panic, or when I nervously, fearfully, watch my client to make sure she stays awake long enough to not choke on her food.

THAT is my everyday slog. How can I help but feel resentment when I see all this we-are-fam-i-ly sign-holding, waving, smiling, on TV? I did not go into warrior mode and kick cancer’s ass while I was in treatment. I slogged it out taking each day as it came. I do the same now. Lyme’s ass is not being kicked; we’re just taking one day at a time, slogging it out, doing the best we can and working toward better days. Cheering crowds make me feel so disconnected with the realities of illness and treatment.

That is what illness, cancer and Lyme, are to me: a SLOG. And the celebrations about to ramp up for Pinktober make me feel DISCONNECTED and RESENTFUL.

And those are my 3 words—but they won’t be the last words I speak.

A Quick Page Turn

Went to the oncologist yesterday and have been demoted from a twice a year patient to a once a year patient! Yay!!!

No I don’t buy into the mythical 5 year thing. I know that my cancer can recur, or metastasize even 10 years from now. This whole episode is a bit of a unicorn.

But hey, cutting doctor visits in half is good enough for me right now. It always seems like the days available for my oncology visit were hard to coordinate given my pet sitter lifestyle. Too many hoops to jump through. So I welcome having one less day I have to find, strategize, coordinate about. I just want to do my thing every day based on my own schedule.

Ha! My own schedule….what a fool! I am a pet sitter, and completely live in service to our Cat and Dog overlords! When I returned to my clients’ home last night, the cat had been outside all day. I had not been there to let her in one door to let her out another door 2 minutes later. She was so angry, meowing so loud I could hear it through the closed door.

So I thought yesterday would be a sign I was slowly getting my life back from cancer. Maybe—but I was never in charge of my own life anyway I guess. What a fool I am!! All hail the Cat and Dog Overlords who rule my every waking moment!

Kitchen Table

I sit at the kitchen table today that is the same table at which I sat when I got the call telling me I had breast cancer.

I love this client that I am sitting for this weekend. The two dogs I am babysitting now are not the ones that gave me comfort during some of the worst days of my life. Both of those dogs are sadly dead; and new, young, brash dogs are in their place—keeping me on my toes this weekend!! But I miss the Labradoodle; whose constant digging of deep holes on the beach that awful week kept me busy filling them back up, so people would not trip. It was a good distraction.

I suppose I am bound to be a bit introspective this autumn, given that I approach my 5 year mark—whatever the hell that means. To me it does not mean much, but I am sure my oncologist, and some acquaintances, will look at this as some great milestone. I’m beyond another hurdle, and maybe my chances of recurrence and/or metastasis are lower now. I’d like to believe that, but all the articles I read now, citing cases of recurrence more than a decade after original diagnosis, make me unsure. I am certainly NOT jubilant or running around saying “cured!” like some fool. I consider myself lucky these days; at least my original oncologist was not a total idiot—he informed me there was such a thing as metastasis—which I knew in the abstract anyway. It seems there are quite a few Stage 4 women out there who were not informed. I shake my head in incredulity at that. Doctors who do not inform these patients should be reprimanded at the VERY least. Incompetent.

This kitchen table is where I sat a little over 2 years after diagnosis, about a month after treatment ended, when I decided to take-this-job-and-shove-it, and subsequently embarked on making my own pet sitting business official, and my primary source of income. I’m not going to get all “cancer taught me life is too short to be miserable” and say cancer was behind the decision. I already knew life was short and I was more than miserable; let’s just say being cancer-fatigued makes that sort of thing easier. You know, the kind of tired beyond caring about anything. It has not been easy, in fact most of 2012 was incredibly difficult—as difficult as my cancer months (Oct 2010-Jan 2012). But I have NOT regretted it.

Psychologically I am not totally healed from either of those incidents; but I am so much better now. Maybe a little better with the cancer stuff, if I am to be totally honest. Thanks to finding like-minded cancer patients online. Thanks to some online friends not in the cancer realm, but whose help was invaluable in so many ways (thanks @angel-of-malahide and @andlifeisgrand). And thanks to some in real life folks, who have mentored me and made me better.

Lots of ink is spilled about “trigger warnings” and coddling of young Americans with such warnings. Are we too fragile to be triggered? I cannot afford such fragility. I need these gigs for my income, so I take them, even if the client’s kitchen table brings back horrible memories. I’m sure most cancer patients don’t avoid places where they received their news—especially if it were their very own homes! But yes, I am sitting here and remembering. But it is not all bad. It just is a timeline that I reflect upon as I approach a milestone. I hate the saying it is what it is because it is soooo overused. BUT, hey, it is what it is. I got cancer, I quit a job, and here I am, for better or worse.

I admit this kitchen table has brought up some unpleasantness, some introspection when I’d rather be looking at cat videos (or all those other internet things that distract me and make me “waste” my time—but if I’m laughing my butt off, is it really waste?). I knew it was coming. I see my “new” oncologist (well, I’ve seen him a few times since early 2014, he is just new because he was not my doc during treatment) in a few weeks. As it will soon be 5 years, we can talk about just yearly visits; not these twice a year treks. I’m all for that! I HATE all doctor visits—even my poor old optometrist, who is really not so bad.

Good. Bring on the once a year. I am more than ready to get over this next milestone. Here is to hoping that new disasters (recurrence/metastasis) do not await me.

Cancer – until you’ve had it, you don’t get it.

Source: Cancer – until you’ve had it, you don’t get it.

Re-blogging this wonderful piece by blogger buddy Alan–a piece he wrote resulting from some chatting he and I have done.

I am grateful he found the Pink Ribbons film–a film I don’t often remember to tell anyone about, in my wrong assumption everyone has seen it. I’ve written several times about how patients with other cancers must view the Pink hoopla, and how breast cancer patients like myself who gripe about Pink might be perceived as biting the hand that feeds. So, I am grateful when anyone learns that Pink just ain’t all it is cracked up to be.

End of Summer Re-Post

Yes, I’m re-posting again. I’ve been a bit busy to write, and well, this piece is still quite relevant, in more ways than one.

I get very tired of comparisons and metaphors in CancerLand, but at the same time, I understand people need the metaphors. It helps them to hear “this is like that”. And this is the essence of this post: this is like that.

Labor Day

Posted on September 6, 2013 by

Like I said in the previous post, it is nearly impossible to explain Labor Day in a beach resort town to those who’ve not experienced it. It is a complete and sudden absence of people, attention, and activity. (See previous post for background on life at the beach.)

eastcoast

I thought maybe post-treatment cancer patients would like to know they have a little insight about how life in a resort beach town on Labor Day feels: it is that “my treatment just ended” feeling. I can certainly say to non-cancer patients who live in my town, “you know that Labor Day feeling?” when I want to describe how it feels when cancer treatment ends.

Driving around the beach highway at 4PM on Labor Day is a strange experience. Everyone is gone. The hub-bub that made traffic unbearable a few weeks ago is non-existent. I love fall and Halloween, but am always a little bummed to see summer go, and this sudden exodus just makes it so real. Labor Day just always makes me a little sad.

Oddly enough, the hub-bub returns a couple of weeks later—not full swing and full-on noisy mind you. But there are those folks that come to the beach in September because there are no kids, less people, less activity. But folks always seem to think it will be quieter the more weeks out from summer it gets. Not so. If one wants a super quiet vacation while the beach is still warm, start it on Labor Day. Sure the service at stores and eateries might be slow, due to a small staff of a few shell-shocked souls who are serving customers and wondering what the hell just happened (the answer is: August, the worst month to work at the beach, just happened).

Cancer patients, does this sound familiar? The treatment experience is very much like the beach in the summer. Super intense, something going on just non-stop, until…it just stops. Finishing the last treatment is like a good-bye: “you did great, good luck, see ya in six months!” It is just a full on system shock, when your every single day was wrapped up in going to a medical facility, and then suddenly it is over. I re-experienced that on this Labor Day…everyone was gone, and I was still on that beach highway.

But it’s good to not have to deal with treatments every day, and it is good to have less traffic. I know the tourists and cars will return in full force next summer. I just don’t want cancer and the whirlwind of dealing with treatment to ever come back.