Better Words

The veneer of 'OK' I wear in order to face the world is wearing thin these days. Radiation has been HARD!

These past two weeks, I can't easily get myself out of bed. I wake, then roll over and press my head into the mattress, futilely hoping it's not actually morning. I check in with my body, which curls up on itself. It doesn't understand what happens in the radiation room, but it knows it doesn't like it. 

It tells me, "Please don't squish my head again today. Please? Please? Please?" 

I give me a nod of sympathy, and tell myself, "Suck it up, Buttercup! Not going is not an option."

Then I roll out of bed.

It doesn't feel good. Not the getting up, not the radiation which follows. Not the sucking it up. 

I do it, but.

This past week, when I saw my onco-psychologist, who has been a helpful navigator as I negotiate the twists of this cancer recurrence path I'm on, I told him what I've been doing, then asked him if he would be willing to help me find better words. 

He readily agreed to help me brainstorm; said my current word choice, though effective, lacks compassion. My body is right. The radiation is part of my best chance of keeping my cancer gone for a time, but it is not kind to me. 

We spent the rest of Thursday's session working to find those better words. He is good at what he does, so when this morning rolled around, I was able to tell me:

"This is NOT OK. 

AND 

I want to have more good days, like [yesterday morning]* when [I got to spend time with my family on a lovely pontoon boat ride at Lake Jacomo]*. 

Both are true."

*[fill in these blanks each day with a good memory]

Then I gave little Buttercup a metaphorical kiss on the top of her head, and helped her to sit up and start her day.

Getting up was SO much easier.

Showing Up

This morning was a tough sell. My last radiation session last week did not go well. 

I was working with a new set of techs, and the lead person didn't care what I wanted. She ran the session the way she always did, my request for warning whether I needed to hold a breath for three seconds or thirty, ignored.

The resulting hyperventilation reactivated my dizziness. To add injury to insult, the crew didn't properly align my shoulder on the table; by the time I finished it was cramping and locked out of alignment. 

Fortunately, the long weekend allowed me time to stretch and exercise my upper right side back into place. The additional time also let my head heal up - by last night, the horizon had quit shifting on me. It was stable for the first time in two weeks.

I did NOT want to go back in and mess it all up again. 

But since I didn't let Libby quit in the middle of her tough chemo treatments, I could hardly look myself in the mirror if I bailed on the comparatively mild side effects of my radiation treatments thus far.

So, I showed up.

To my pleasant surprise, when I was called back for my session, it was Lynsey doing the calling - she's on what I've come to think of my A-Team. She and Natalie listen. They are quick, careful and compassionate. My apprehension level quickly eased. I was quickly strapped into place and treatment started.

Then. 

About halfway through the session, my meditation music suddenly stopped. 'What??' I recognized the strains of the song replacing the quiet tones - the Eagles, Hotel California.

Welcome to the Hotel California
It could be heaven, and it could be hell.

And in the master's chambers, they gathered for the feast

They stab it with their steely knives, but they just can't kill the beast
Last thing I remember, I was running for the door
I had to find the passage back to the place I was before
"Relax, " said the night man, "We are programmed to receive
You can check out any time you like, but you can never leave"

'Really??? Of all the songs in the world, someone picks THIS one?' I started laughing.

The song lasted for the rest of the session - when Lynsey came back in, I asked her why the switch. She apologized, said they hadn't touched a thing, but that sometimes Pandora, the streaming service, has a mind of its own.

Clearly, the Universe has not misplaced their sense of irony.

Rough Start

My twenty sessions of radiation got off to a rough start last week.

They did a simulation the day before I was to actually start radiation, to make sure they'd measured everything correctly. As part of the treatment, there is a customized plastic mold they put over my head (it covers my head, but not my face). The mask is strapped to the table, holding my head immobile in order to ensure my throat stays out of the line of fire. They're radiating the lymph nodes right next to my esophagus, so while I'm not fond of having my head held down, I am all about doing all that can be done to keep stray body parts out of the path of the destructive rays.

Unfortunately, they cranked down on the mask a bit too tightly, compressing the back of my skull into the underlying support. I didn't know what I was or wasn't supposed to feel; I wasn't expecting to be comfortable - but when I stood up I felt as if the back of my skull was asleep. The sensation quickly resolved into a dizzying pulse. Not painful, but definitely also not right. I had to sit for a moment or three before I felt steady enough to drive. 

Fortunately, rest helps. 

While they have been careful not to overcrank the mask since, the damage was done, and I've been fighting waves of dizziness all week, in addition to the expected fatigue and whatever yuck is coming from adjusting to the aromatase inhibitor. Each day, when I settle into the headrest of the treatment table, it feels as though I'm pressing on a healing bruise - not undoing the healing progress which happened overnight, but definitely setting it back a step or two. Each day, after treatment finishes, I stop in the handy chair in the hallway outside the nurses station and breathe and massage my scalp and neck until the horizon stabilizes and I can safely drive home.

Fortunately, the world stabilizes sooner each day. I am on the mend.

Having the weekend off helped immensely. I was fortunate to be able to get away and spend it at the Stockton lake cabin of some friends. My energy was limited, and I was sad to spend a good part of Saturday resting at the house instead of trolling about the lake with the rest of the crew, but there are worse consolation prizes.

While they were out, Sylvester and I sat on the porch. I read a book, Sylvester kept a watchful eye on the surrounding area. We both enjoyed the moment of peace. 

And, resting for the afternoon recharged my batteries. I had plenty of oomph available to fully join in the laughter and fellowship at the dinner table, which was a balm for my soul. I am so grateful for the support of my friends.

Four down, sixteen to go. One step at a time.

Why Bother?

"Why bother?" I asked myself.

Why bother to spend time learning Spanish or rebuilding my piano skills? Why bother to work on the various tasks on my to-do list? Why bother to clean, to repair, to sew, to read a book?

It was easier, last week, to spend my afternoons caught in a mindless and seemingly endless doom scroll on my iPad than it was to engage my brain. I actually found myself reading the political news at one point - and you know I've avoided that part of the paper since November 8th!

When I took a step back, it didn't take me long to uncover what was behind the spiral; there's a part of me that REALLY doesn't want to do radiation and hormone therapy. These things are scary! Chances are excellent my cancer will return one day anyway - why not let it just come back now? Why even try?

Um. Hold on a minute, girl. 

Why create, in a world that's going to hell in a handbasket?

Because I want to be on the side of the Universe that creates senseless Beauty. The peonies in my backyard lasted less than a week - was their beauty diminished because it was short-lived? A sunset lasts less than an hour - are the colors less vivid because they quickly fade to night? Music fades from the world just moments after the notes are heard - is that a reason to never be part of creating the sound, to never attend a concert?

Are my hours of practice wasted because I will never be a concert pianist?

Yeah, everything I create will fall apart, and sooner rather than later. So what?

I don't know where Beauty goes after its time. But if I compare an afternoon spent doomscrolling against one creating and learning, I do know which will leave me in a better mental space at the end of the day, which will lead to a more restful night's sleep.

I know I will fall into the doom scroll trap again. But next time, I'll try to remember, sooner, that I can choose better ways to spend my precious days.

One step at a time.

Taking a Break

I showed up. I went to my appointments last Wednesday. 

The oncologist and I spent about a half hour first thing in the morning, talking over pros and cons of the various treatment options. Based on our consensus, I started taking exemestane, an aromatase inhibitor, that night. (If my body tolerates the drug, and I hope it will, I will be on it for quite some time.) 

I went home and grabbed lunch, then headed back out to spend almost two hours in the radiology department. I am now properly marked and measured and scanned; I will start my sixteen sessions of radiation on 6/25.

Then, I took a break from cancer for the rest of the week. I dropped all those questions and concerns, obsessions and control issues, into a handy basket, firmly closed the lid, then tucked the whole package away for a few days.

My red-headed stepchild had come into town for the weekend.

Since she's somehow turned into a responsible and productive adult, chances to spend one-on-one time with her have become few and far between, and it was easy to set everything aside to focus on renewing our relationship.

We spent hours on my back porch, sipping coffee and just talking. We have both been dealing with world-rocking challenges these past couple of years, and it was wonderful to spend time leisurely reviewing our learnings and remaining conundrums. We provide good perspective for one another. 

I was sad to watch her drive off yesterday morning.

Once she left, I sat down with my calendar to get an idea of the shape of my days this coming week.

I had to laugh. Clearly the Universe doesn't want me to sit around moping as I wait to start treatment next week, because my friends have reached out from several directions to pull me off my couch and out from under my fuzzy blanket. (Probably a good thing - it'll be a bit warm this week for blankets.) I have coffee, lunch, dinner, Shakespeare in the Park - a something going on almost every day of this week. I'm sure I'll still manage to find time to obsess about cancer and its effects on my life now and again, but I won't have enough down time for it to take over my days.

I'm calling this a good thing.

Waiting Again

Waiting, waiting, waiting.

In contrast to my surgery date, which I was eagerly anticipating by the time it arrived (EEWWW! Get it oouuutttt!), I have found myself looking at the calendar this week with a fair amount of dread.

On Wednesday, I will see both the oncologist, where I anticipate 'we' will finalize the endocrine treatment regimen I will be taking, and the radiation oncologist, where I will get measured and scanned and given some tiny dot tattoos in preparation for my treatment sessions which will start in two weeks or so.

This past week, for the first time in ages, I've found myself, time and again, diving down internet rabbit holes. I've spent hours each day doing ALL the NYT puzzles, then reading all the parts of the paper. A couple of times, I even found myself actually reading the political news of the day (which I haven't done since November 8). *sigh*

I stop. I ask myself, "is this really how you wanted to spend your time?" 

And then I mindlessly keep scrolling. 

Avoidance much?

I'm working to crawl back out of my hole; I am tired of all that nothingness. It makes the backs of my eyes hurt. 

It helps that Kate is recovering well from her marathon surgery; things are healing up and she likes what she sees in the mirror. She is also tolerating the endocrine treatments well - they're not knocking her flat and her brain is still functional. This past weekend, when I talked to her, she sounded like herself for the first time since she found her lump last July. She is living proof that this, too, shall pass.

I tell myself I don't have to be strong. I don't have to stay positive. I can mope in the corner all I want as long as, when the time comes, I show up at those appointments.  

One step. I just have to take one step.

This, I will do.

Quilting

A few years back, Kate found a quilt top at an estate sale. She kept it for a bit, then decided a quilting project was not going to be completed in her near future, and passed it on to me. I took the piece and put it in the back of my closet, targeting its completion as a good task for winter's evenings.

There it sat for quite some time. I did take it out long enough to head down to a local fabric shop, where I picked up the batting and backing I needed to finish the piece. Back into the closet it went.

As I was busy nesting before my cancer surgery this spring, the quilt was one of the projects I decided NEEDED to be completed as I started this round of treatment. (Sometimes, it's just not worth the energy it takes to argue with me.)

So, I pulled it out, fully intending to use yarn in the center of each hexagon flower to hold the piece together; a quick way to finish the blanket. Then I took a closer look at it, and realized someone had hand-stitched the thousands of tiny hexagons together. 

I stopped.

I began to form a mental picture of a woman, seated in a comfy chair, next to a fireplace. She is tired, but wants to create beauty at the end of her day, which was filled with less creative tasks. She quietly wields the needle and thread, using the repetitive motion to soothe her mind and quiet herself for sleep.

I pictured her tying off the last knot, then spreading the completed quilt top over her nearby sofa to admire her handiwork. I can feel her pride in accomplishment. She folded it up, planning to complete the quilting soon, then. then. 

I don't know what happened then, but given that she never finished the piece...

I re-formed my plan for finishing her piece. I wanted to honor her handiwork, and so decided, instead of using yarn to quilt, I would dust off my embroidery skills and make sunny yellow daisies to hold the pieces together. (This is one of those times where I'm just fine living alone, because there was no one to grumble when the project took over my dining room table for the last two months.)

In that last hour before bed, I've been putting on some quiet music and sitting down to sew some flowers. The meditative motion has given my hands something to do and freed my mind to attempt to sort through all the feelings which have been churning since I first found out the lump was my cancer, returned.

I finished the last daisy last night; will begin putting the binding on the edge this week. To work on completing this unknown person's labor of love, a deliberate act of creation in the midst of the rubble of my delusions of control, feels good. 

Beauty Is.

Silly Girl

When I first talked to my medical team after confirming my cancer diagnosis, I was given a rough timeline. Surgery sometime in late April, radiation in June, hormone treatment somewhere in there, reconstructive surgery in September. (Treatable!) 

I found it reassuring to have a timeline for getting through the treatment, and blocked fun things into the treatment gaps. My initial surgery happened on schedule, all went well. I met with the radiation oncologist last week to talk about next steps, she reiterated that radiation would happen in June. Then her nurse called to schedule the radiation prep appointment which needs to happen two weeks before radiation can begin. 

"Mid-June work for you?"   **ARRGGGHHHH**

No, it couldn't happen before mid-June, all the slots were blocked. Nothing to be done, just part of being caught in the medical system.

What??? We've known this appointment needed to happen since early April. If there was going to be a problem getting me into the calendar, could we not have set up the appointment then, and moved it if there was a complication???

*sigh*   Too late now. What's (not) done is done.

Radiation will now happen in July. Lexi is also coming in July. 

Rumor has it most people don't have problems with radiation, but. Some people do. She's spent the last nine months watching her mom battle this same disease. I wanted to shield her from 'getting' to watch me hit a wall. 

*another sigh*   IF I hit that wall, we'll figure something out. (We. My people will help me.)

This also means reconstructive surgery needs to be moved - possibly to October, if not then, it'll be March.   **huge, heavy, sigh**

All because of sloppy scheduling.

As I was dropping off a box of food with my local food pantry, I was ranting about all the above to the lady who runs the mission; I've gotten to know and like her over the couple of years we've been interacting.

She said, speaking of herself, "Whenever I think I can control life, something happens. I stop and tell myself, 'Silly girl, thinking you could have controlled this. You know better. Life cannot be controlled.'"

I stopped. I laughed. She is absolutely right.

Every time my delusions of control are shattered, I hate it. I rant. I rave. I stew. Every time. 

Time to remind myself I do know the only thing I can control in my life is my reaction to what happens.

Silly girl.  

*she feels a wry smile on her face, then begins to take steps to adjust to what is and move on.*

Healing

The cancer medical teams at least try to be nice. I mean, they give you time to heal up before they do their best to make you sick again. That's something, right?

I talked to my radiation oncologist this morning. I will get another month to heal before they begin zapping my chest. 16 sessions, I will have.

I am more than a bit apprehensive, but.

She said, without radiation, the chances of my cancer recurring again within a few years are 20 - 25%. (Yikes!) With it, those chances drop to under 5%. I like those odds a lot better, so I'll face down my fears and show up when the time comes.

In the meantime. Here I am. Waiting. My favorite part.

I seem to have fallen off the path of "Not Yet" in the chaos of the past few weeks. Which makes sense, because Yet came. But it also went, and I'm ready to find my way back to Not Yet until the next thing starts.

I feel fine, physically. I was cleared for exercise last week, and movement has begun to work its magic. I'm sleeping better and my creaking joints are thinking about realigning themselves. Give it another week, and I'll be good as new.

Mental recovery has proven to be a bit more of a challenge. I find myself waiting for the other shoe to drop. (Another shoe? The Being of the Universe in charge of dropping shoes to disrupt people's lives clearly isn't just grabbing the shoes off their feet, because I've had more than two shoes drop on my head in quick succession here. Maybe they are just kneeling in their closet, tossing the pairs that no longer spark joy over their shoulders? Maybe they have more than two feet?)

I digress.

Tomorrow will get here soon enough.

Time to get back to reveling in the gift which is today.

Graduation Season

I have several graduation parties to attend these next few weeks; had a delightful evening this past Saturday as I joined the people from my old neighborhood in congratulating Eve as she crosses this significant life threshold.

I watched her for a bit as she warmly greeted her guests. So happy, her face, her whole body, proclaiming her joy in accomplishment - it did my heart good just to bask in her reflected light.

As I sat for a moment, my thoughts wandered back through the years. I could feel the echoes of her joy in my soul. And then I wondered how it can possibly have been more than forty years since I walked across a similar stage.

Every time I come across those memes which ask me what advice I'd give my eighteen year-old self, I draw a complete and utter blank. 

I'd feel a total hypocrite if I focused on the sunshine unicorn rainbow part of life. I mean, I smile every time those memories bubble to the surface, but they are all the more precious because they are the rare gems which have brought sparkle to my days.

Long-ago me wouldn't understand the value I now place on the pile of ordinary days which make up most of my memories. They are a jumble of ordinary rocks; the days I can only remember the sense, rather than the details, of. If you pick one up and study it, there is (usually) beauty there. As a heap, they are unmemorable. But. They are the background of the mosaic of my life story; without them the rest of the picture makes no sense. So precious.

I couldn't bear to tell her of the hard days ahead, those caches of sharp-edged stones which have cut so deeply as they were added to the picture. Best to stumble into those as they come - no need to worry in advance. 

I do wish I could give her the box of coping mechanisms I've developed along the way. These are the tools which enable me to step back and make sense of the developing picture as new stones are added to the story of my life. Sometimes, I can even use them to help shape the image. But like all tools, they are only useful if one understands what they are used for, and has a need to use them, so probably best she picks them up along the way.

Nope. No helpful advice from this corner. Young me is just going to have to figure out life the same way old(er) me is still working to figure it out - one step at a time.