Tuesday, May 19, 2015

Taking the Phone Off the Hook

A long, long time ago, I heard a song by Billy Joel that was never one of his hits, but one that deeply resonated with me - "Vienna" from The Stranger album. It's a song in which an older person is giving some hard-won advice to a younger person (maybe they're even the same person), and you just know that Youngster isn't listening, being in far too much a hurry to get going to Somewhere. And you also know that Oldster knows that Youngster isn't listening, but Oldster's going to try anyway.

I like it. A lot.

I've been away from the blog for longer than I really mean to - at first, it was "well, I'll write after "X" happens" and then I missed writing after "X," so I figured I might as well wait until "Y" happened, and so on and so on and now I find myself here. Lots has happened - FryDaddy and I celebrated our 5th anniversary to much loving and little fanfare; the semester finally ended (seriously - too many medical appointments and too much self-inflicted pressure on this one); Mother's Day and my mother's birthday; and also our slightly-delayed anniversary trip that we'd saved up for so FryDaddy and I could go hog-wild in a used bookstore. (Look, I don't judge your relationship, do I? And we revel in the printed page.)

Clearly, that's too much to try to cover here, so I won't. Suffice it to say that I'm working hard on not working hard. The silver lining to the last seven months has been discovering that I really need to ease up - that not everything's a forest fire in need of my immediate and undivided attention every second. And that it's okay to not get everything done. Yes, the house has "hot spots" that need some attention (you know "hot spots" - those places where stuff just gets dumped and never sorted through. I'd been doing really well about keeping those under control; now I need to start over), and that'll happen. I'm also ready to start pushing myself with jobbling again. But I'm also ready to spend some time reading for fun (how is it I never read Little Women? Well, I didn't and I'm fixing that now). I'm also conducting experiments in testing the best spot in the backyard for the hammock and watching the herb garden take root.

Yes, I've got the beginnings of a lovely garden thanks to generous friends and a willingness to work the business end of a shovel. Gardens take time, so even if everything takes hold (unlikely; I'm working in Carolina red clay here and my technique tends to be a bit - well, let's say enthusiasm wins out over skill most days), it'll be a year before you can really tell. That's okay - good things take time and I've had some hard-won lessons in the futility of rushing things. Speaking of which, I've got a keynote to write for a conference I'm thrilled to be invited to. The research is done (mostly) and I've finally reached that time where I'm itching to get words on paper. 

Plus, I've had three days away with my love where we had nothing to do at any particular time and slept so late that we missed housekeeping making up the room one day. We came home to pets who had missed us and a cozy house that takes care of those under her roof.

And our "long vacation" - our first one since our honeymoon - is coming up in a couple of weeks. There's some serious work to get done between here and there, but when we pull out of the driveway, I expect it to be with the "phone off the hook."

Yes, I've been to Vienna. But I know that there are other places that wait for me.



This is from Joel's performance in November 2014 at Constitution Hall in Washington, DC. He was honored at the 2014 recipient of the Library of Congress Gershwin Prize for Popular Music. The arrangement is a tad different from the album, and Joel's voice has changed a bit from the 1970s, but it works so very well.



Sunday, April 12, 2015

So Now What?

After being brought to the realization that yes, I'm through with radiation treatments but also yes, I'm sick from them, things have (oddly enough) gotten much easier. It has to do with not fighting so hard to be better when I'm not and instead just accepting that I'm not quite there yet. I know - elementary, dear Watson, but I'm a hard-headed mule sometimes.

So over the last two weeks, I've been trying very hard to just listen to my body instead of my head (that thing has proven that it just Can't Be Trusted sometimes). As a result, I'm getting stronger more quickly. My days aren't back to "normal" just yet - basically, I'm good in the mornings and I work until I get tired, which I recognize by my loss of concentration, then I go home. I nap, then usually I can finish what I left unfinished earlier in the day. I had a check-up with my regular doctor (as opposed to my oncologist and radiation doc; those are scheduled for later) who reassured me that this is my new normal; at least for now. It won't stay here forever - I will get stronger and have more stamina - but this is where I am for now and that's to be expected.

I was strangely buoyed by this news.

And what I'm seeing now is that I can have one really strong day, but it's usually followed by a day of being pretty wiped out. Therefore, it was with great nervousness that I approached yesterday's Gold Rush 5K, which was held as part of my college's 50th anniversary celebration. FryDaddy had made it clear that I was to take it easy and I reassured him that I would, but that I really wanted to do this event. It would be my first post-radiation timed jobble and it was important to me to see that I could finish it. I've canceled two events already - and those decisions were the right ones for me to make at the time. But this race was super-close to home and non-competitive. (Oh, there are the serious-minded ones, but they're so far out in front of me that I don't have to fret about that.)

 With all that in mind, I donned my "let's not take this too seriously" race tutu, posed for pictures in the Very Fetching Hat (which was swapped out for my trusty ballcap for the actual race) and positioned myself at the back of the pack. I'm still not completely sure of my exact time - it was somewhere around 40 minutes, which is slowslowslow, but thrilled me. Plus - get this! - I somehow managed to win second place in my age group! I wore that medal most of the day! I had a number of friends in the race - some doing their first 5K, some old hands, and one - let's call her PiMaster - came in first among all the women competing. It was a wonderful morning and I was surrounded by support and was able to give a little support as well.

So it seems that I'm getting closer to being back. I've got goals over the next month - get some plants in (both flowers and food), get the house back closer to order, and so on - and I'm so very pleased to announce that I'm much, much closer to learning to not overdo. One of the greatest tools in that? So easy a child can do it, but we forget as we get taller.

Ask. Just ask. (This is in no way to be confused with whining. Asking is more "Can I have?" and whining is more "But I want.")

Ask for what you need, be that encouragement, coffee, an afternoon off, the name of a good therapist, grace to just get through the day until you can throw the covers over your head. Ask. People want to help and the Universe is really not out to get you; no matter how it seems some days. And for the love of heaven, help someone else out! Let someone cut ahead of you in the grocery line, hold the door for someone whose hands are full, smile at someone. Because - no kidding - we all have it rough and we're all in this together.





Sunday, March 29, 2015

Truce & Realization

The title isn't as quite as zippy as "truth & reconciliation," but it'll do, it'll do. Which is, in large part, what this post is all about. Ever since the tour through the suburbs of Cancer Town started about five months ago, I've tried my best to look for the good parts; the lessons of kindness and grace that could be learned. In large part, I've had success with that - friends have been unfailingly kind, my medical team has made me feel that we're actually a team instead of me being Chart #17, my family has been just incredible, and even acquaintances and near-strangers have been beacons of support for me and for FryDaddy through all of this.

I can say with honesty that I wish I hadn't had to learn any of it, or at least I wish I hadn't been put into this class. But I can also say that I'm glad I have learned some things along the way. What follows are personal lessons; actual mileage may vary and heaven knows, the contents may have settled during shipping.

My stint of radiation treatment has concluded and I didn't expect/prepare for the aftermath. Even though I'd been told what to expect, I didn't listen. I truly thought that I was different and that while it might take other people a month or more to get back to about 80% energy-wise, well - that wasn't going to be me. Fewmets, I say. I've been out of treatment for a touch over a week and I get tired very easily. It took me about a week to recognize the obvious. (Speaking of which, I passed on Saturday's Color Vibe run - a decision I'm convinced was the right one due to my physical state and the weather that day [clear but quite cold], but a decision I agonized over far more than a sane person would have.) It also helped that FryDaddy said something that actually got through the butcher's block of my head. Yes, he said, it's true that I'm not vomiting or feverish, but I'm recovering from a super-mild case of radiation sickness. Somehow, that term made an impact that nothing else (including his [joking?] threat to go to the vet and get a tranq gun) had made. From that epiphany, a number of others have sprouted, all of which can be summed up with this:

I'm not what I was before the diagnosis but I have the ability to be magnificent in this new skin.

To me, this is completely eye-opening. As I've gotten older, I've struggled with - well, with getting older. I spent much of my growing-up years being the youngest in my crowd - I'm the baby of the family (both immediate and extended) and was the last of my friends to get my license and pass the other markers of teenhood. Also, I read the roles of my family as the pretty one, the athletic one, then me. (Don't bother telling me anything about that isn't accurate; I know it's screwy, but there it is.) Mind you, I never thought I needed plastic surgery to avoid scaring the livestock, but I always saw myself as plain, clumsy, and bookish. (Funny, though. I always thought I was funny.) Over the years, I made peace with that and even modified my opinions a bit, but there's my baseline; that's the skin I lived in.

And now my skin is different. The texture is different and the color is different - the treated area is both burned and peeling at the moment. My overall body is different - due in part to aging and due in part to dramatic changes (read: not the good kind) in the last few months in my diet and exercise habits. Things aren't tight and jiggle-free. My clothes are larger, which I spent a good deal of time hating, feeling that I was "letting myself go." (God, what an awful phrase, as if I need to be tightly controlled at all times instead of inhabiting my own body.) The fact of the matter is that yes, I'm different physically than I was twenty, ten, or even five years ago. I'm not willowy or waifish. I like a good, dense cheesecake and I long for the day when I can tie on my shoes and slowly jobble to the end of my road again, huffing and covered in the honest sweat that comes with exertion.

We had some tree work done over the last few weeks. Now that it's completed, the yard looks different. Messy in some places where leaves weren't raked due to the brush and also sort of raw where the trees and brush are cleared out. I'm looking forward to figuring out what to do with the space, determining what will best grow there and preparing the ground.

You know what? I feel the same way about my body. It's different than it was. In a way, brush has been cleared out and that's left changes on the landscape. And - it's true - I'll never, ever look like I did 20 years ago.

I'm so much better. 

Even on the days when I feel frumpy or tired or overwhelmed or like an impostor. I worked hard to look like this - to be upright and breathing and of at least a reasonable amount of usefulness to others and whether I do that with shiny hair and mascara-ed lashes or mismatched socks and a well-used ballcap jammed over pink hair - well, as Billie Holiday would saucily remind me, ain't nobody's business if I do.


Sunday, March 22, 2015

Zero!

As in, "How many radiation treatments are left?" That's right - today is Day 3 post-radiation of my DCIS journey. On the final day, FryDaddy came with me to meet my treatment team (who really were just fabulous throughout the entire process) and see me ring the bell that they have for folks on their final day of active treatment. My techs gave me a glowstick necklace to simulate the superpowers that (sadly) never manifested - turns out that comic books lie about that part - and drew a funny picture on me that made the (ahem) affected area look an awful lot like Jeff Dunham's puppet Peanut. And there was, of course, cake and celebration.

So yes - 33 treatments over six-and-a-half weeks have come to an end. (Yay! Cheers! And the crowd goes wild!) I'm not done yet - I have frequent follow-ups and five years of tamoxifen ahead of me, but this endeth the active stage of treatment. It'll take a little while for me to heal from it all - I'm burned and the healing involves itching, peeling and overcoming the fatigue that comes with 33 doses of radiation dangerous enough to the healthy to be delivered in a room that could withstand a nuclear attack - seriously, the door to the treatment room is a good foot-and-a-half thick. Therefore, I'm not planning on doing much beyond my day job for at least the next two weeks (and I hope to do large chunks of that from home). I'm using Easter as my marker. It seems appropriate to use that day of joy and resurrection as my new starting point.

Back before I realized that I was like everybody else, and would therefore have side effects from radiation treatment (seriously, I'm not always the brightest bulb in the chandelier), I signed up for a 5K Color Vibe run with a friend who's never done a 5K before. That seemed like a great thing to do. The Color Run was my first 5K a year ago, it's untimed and tremendous fun, and it was the official "coming out" of my jobbling persona, the Dancing Sloth - I was eager to share that experience. But the event is next weekend and I'm not in any kind of shape for running. Well, that's okay. There will be very little running from this Sloth, but I expect to walk the route and get doused with color and cheer on my friend. No doubt about it, I'm starting my training over pretty much from scratch (and I'm not really starting anything until Easter), but that's okay. I understand things differently now and part of what I understand is that I'm still a runner, even if I haven't run in a while. You have to take time off to heal from injuries, whether those injuries are running-related or not, and by my calculation, cancer treatment counts.

Other changes are also indicated, especially in diet and stress reduction, and these are areas FryDaddy and I plan to work on together. Much work remains to be done but wow! am I glad to be moving forward! Let me once again give a shout-out to everyone, everywhere who's been part of this with us. Whether it was your willingness to wear a colander on your head, whip up dinner for us, tend to the Spookinator, rake the yard, pray, meet for coffee, send cards - the list of kindnesses that let us know that it wasn't just us against the world goes on and on and on and on. And I don't know that I can adequately express how much it all matters. It really, really did - and does! I've learned so much about kindness, compassion, and (weird as it sounds) joy over the last few months and I'm grateful for the lessons, although I still dislike the teacher.

Be kind. Everybody needs it - especially the ones you don't think deserve it.


Tuesday, March 10, 2015

Boost!

I'm pleased to report that I'm on the home stretch! Yesterday was my last "big" radiation treatment and I had my "field check" to mark the area that would be involved in these last eight treatments. These "boost treatments" are more narrowly focused than the previous treatments and focus more on the actual surgical site instead of on the entire breast. The good news (aside from the fact that this means the end is in sight - YAY!!) is that I'll no longer be getting radiation on the area that has been most affected by the radiation. While my side effects haven't been that bad, there has been some burning and irritation, as well as noticeable fatigue. Not exhaustion, mind you - it's not that I can't get out of bed, but it takes a bit longer to do things, running is a pale memory right now, and I conk out by the time television considers "prime." This too shall pass, although it may take the better part of a month post-treatment for me to really feel like myself again.

Of course, the end of radiation treatments is not the end of this whole thing. I'll still have check-ups and there's a medical regime I'll be on for five years. FIVE YEARS. Then again, post-surgical radiation statistically cuts my chances of recurrence in half and following this regime cuts that number in half again, and even I can do that math.

Another one of the common side effects of even a brush with cancer is increased anxiety and boy, did I get that one in spades. Stupid ol' brain just wouldn't settle down and look at reality. Oh, no, it had to spinandspinandspin. Lack of sleep led to more fretfulness over a wide variety of things - my Calvinist work ethic makes me think fatigue is laziness and I should just "buck up." Also, like many academics, I suffer from "impostor syndrome" from time to time, feeling that my writing, ideas, and observations aren't really original and that people are just being kind - ideas like that went into overdrive.

After a few weeks of trying to think my way out of it, I used the common sense God gave geese and made an appointment with my doctor, who patiently informed me that, at this juncture, not feeling normal was - well, normal. So we came up with a plan to work on that issue. Seriously, people - check your headspace. You don't have to feel rainbows & roses constantly (in fact, that's pretty off-the-normal-scale), but you wouldn't "tough it out" with a compound fracture, would you? Same idea. You're worth taking care of, but you have to be willing to do it.

Let me repeat that - you're worth taking care of.

Sunday, February 22, 2015

Silver Linings

It was going to be far too easy to make this a very whiny post. However, if I've learned one thing in the last four months through my dealings with Cousin Cancer, it's that attitude really does matter. No, it's not going to turn a horrible diagnosis into a garden party, but I need to sometimes remember that I drew the best draft number available in this war - my diagnosis was made earlyearlyearly and my treatment has (so far) been far more inconvenient than tragic. So let's look at a few weeks of silver linings here.

DOWNSIDE - as you know from my previous post, right as I started radiation treatment (I'm not quite half-way through right now), we had a bad windstorm which knocked a tree down into the fence around the dog pen, scaring all of us (especially the Spookster!) and causing quite a mess. Well, the tree is cut off the fence and we have to have fence work done. To be on the safe side, we had a friend who's a professional arborist (let's call him "Big Tree") come and inspect the rest of those ivy-covered trees. Upshot - wow! Tuesday, we're having about half a dozen trees taken out. So a hefty bill for both tree removal and fence replacement.

UPSIDE - I'd trust Big Tree if he told me to dance counter-clockwise around an oak. He inspected my trees when I first moved into this house - which was nearly ten years ago. (Side note - wow! Ten years!) And trees are beautiful, but less so when they've smashed through your roof and are in your living room. Having one tree come down prompted us to do some "what if?" work, which in the long run, is likely to save us from a much worse scenario than having a couple of bills for tree removal and fence work.

DOWNSIDE - Like all rational people, I hate Carolina ice storms. They aren't especially pretty and they cause havoc for days after the storm itself moves through. We had record low temperatures here over the last few days, which has a tendency to make me move at sloth-pace, so I got a little behind at work. Nothing bad, but we had to re-arrange our weekend a bit. Making plans is a surefire way to make God laugh - yesterday, when it finally warmed up above freezing, FryDaddy and I had to deal with our first (and please, last!) burst water pipe. Sigh.  Huge mess, and a plumbing bill on top of the other expenses.

UPSIDE - Aside from a ten-minute period during which I was a full-scale raving lunatic, we came through this one pretty well. I found the water cut-off under the house without too much trouble, although it took FryDaddy's Hulk-like strength to actually get the valve to turn. We went to my gracious mother-in-law's house for showers and laundry facilities and our faithful plumber (seriously - a great guy!), Piping Hot, had us up and running (water) within three hours. Also, it was an outside pipe leading to the washing machine, so no flooded kitchen. We got the mess dealt with toot-sweet and I just flipped over our first post-broken-pipe load of laundry, so we're all good.

ALSO UPSIDE - Being stuck in the house waiting for the Big Thaw, I moused around one of my favorite Websites and located a Little Free Library near me. (It even has dog treats!) A friend had pointed it out to me, but I couldn't remember exactly where it was - the roads get rather twisty in that area. I dropped off about ten books yesterday and picked up a light chick-lit read. Now that I know where it is (about a mile from the house and again - dog treats!), Spooky and I will visit regularly.

ALSO ALSO UPSIDE - People are kind. Coming home from radiation this week, I stopped by my favorite coffee shop in town and realized that the trees ringing the old courthouse square were festooned with scarves. Seems a local chapter of a women's service organization had done that to provide warm scarves for anyone who needed one in the bitter cold weather.

DOWNSIDE - Radiation treatments five times a week.

UPSIDE - By going to the treatment center, I learned about a great organization in my hometown called "Because We Care" that raises money for cancer patients undergoing treatment to cover the auxiliary costs, such as medications, transportation, utilities, etc. They had a big fundraiser last night and I received two tickets, so FryDaddy and I got ourselves slicked up and went out on the town. It was a New Orleans-themed masquerade party with wonderful food (avoiding the sweets table and the roving trays of beignets was hard, but Lent calls), Mardi Gras style decor, and dancing. Yes, FryDaddy and I danced - a little 80s funk, a little shag (I'm a bit short for him with that, but we still managed to twirl a little), even a touch of contemporary whatever-it-is-the-kids-are-listening-to-these-days.

We had a marvelous time - although our assigned seats were purloined by several women who apparently are still stuck in junior high. Ladies - all the sequins in the world can't cover up that type of ugly. I suppose I should thank them, as we wound up at the table with the band, who were undoubtedly more fun anyway. It was huge fun to dress up and see other people all gussied up - I learned that my college president is a huge Dexter fan (hmm??), his wife goes all out for the Oscars, and my oncologist can well and truly bust a move.

It really is all in how you look at things. And my overarching resolution to "be kinder to myself" seems to be intact and even growing!


Monday, February 2, 2015

Bzzzz - Zap!

I waited until today to post so I could give you the Very Latest. Today was not only Punxsutawney Phil's big day, it also marked the beginning of my six-and-a-half week journey through radiation treatment. Over the last couple of weeks, everything has been done to get me ready for today - sample films were taken, a personally-molded headrest was made, and I've even gotten three teensy "triangulation" tattoos that are used by the radiation techs to make sure that I'm properly aligned for each treatment. After all, radiation is useful stuff, but it's also very strong stuff and you want to focus the beam as narrowly as possible. After all of that, today was actually a little anti-climatic. It's not like Steve Rogers getting bombarded by Vita-Rays and screaming as he transforms from a skinny Brooklyn underdog into Captain America - instead, it's actually a lot of lying still on a VERY hard table while a couple of techs fuss over getting you into position and then a machine moves around you and you hear some buzzing sounds.

Then you're done for the day!

Seriously, I know it's a cumulative thing and that I'm likely to experience some slight sunburn-like effects and some fatigue, but if this is anything to go by, it's not bad. It certainly doesn't hurt (aside from the tattooing, which isn't awful, but definitely stings) and it's fairly quick.

Then I came home to this. It's been very windy here today and a mature, covered-in-ivy pine tree couldn't take it. It smashed down across the back fence of the outdoor pen (if you look hard, you can see bits of the chain link peeking through the branches), no doubt scaring the bejeezus out of Spooky-the-Delightful. We're working on how to get it cut up and removed - it's a BIG tree - and we'll probably have to replace at least the back part of the fence, but no one got hurt. It's solvable.

I'm learning that phrase - "It's solvable" - can be applied to a number of things in my everyday life. I'm still working on my yearly resolution to "be gentle with myself," and I can report some progress in that area. FryDaddy and I are still working the fine details, but if we organize our time and work (and I mean work HARD!) six days a week, we can actually have a real, non-working Sabbath. We've done it for two weeks now and it seems to be something that we both really want to continue. Honestly, it's not easy. We've gotten these great opportunities outside of "regular" work and those involve us coming home and/or starting on those projects extra early in the day, but again, it's solvable and we really enjoy having one day that's ours to do with as we see fit. So we'll keep working at it.

Now, about that tree . . .