Saturday, January 7, 2023

Day 5/6

 

Intentions.

Writing everyday was an intention, not a promise, so I haven’t failed. I just didn’t write yesterday.

Not to make excuses but life didn’t really allow it. On January 5th, I woke up early to see if there might be a glimpse of the sunrise before yet another storm moved in. While I did catch a bit of light, there was no visible sunrise, and my lighthouse was being pummeled with a storm surge that turned catastrophic for coastal homes and businesses as I mentioned in the last post. As the storm surge moved in, I moved out. 

Late last month, I’d made plans with my son to bring some things down to him at UCSB before the quarter started. Between “Pineapple Expresses” and “Atmospheric Rivers”, driving four plus hours seemed like a decidedly bad idea so I decided to take advantage of a brief rain break Thursday afternoon to make the drive.

Years ago, I was always up for a road trip. Give me a bag of FUNYUNS®, a package of Reese’s Pieces, and some caffeine and I was famous for getting in the car with the Eagles Greatest Hits (cassette!) and ending up in a different state – which is a considerable feat when you start in the middle of Texas.

But long road trips haven’t held the same excitement for me in the last couple of decades. And solo road trips pretty much ceased to exist after I had children.

So, this trip was keeping a promise while consciously going outside of my comfort zone a bit – something I feel like I should do more often.

To say I was ‘white knuckled’ as I began my drive, would be an accurate representation. Rainfall had slowed but coastal evacuations were still in place and massive flooding was underway. With the daylight, and Google Maps, I was mostly confident that I could avoid issues and the recent public service mantra, “Turn around, don’t drown” was running through my head.

Once I finally made it to SB 101, I had a bit of confidence that this was perhaps a hairbrained, but not completely insane, idea. The drive was long, and I didn’t make any stops which speaks to my out-of-practiceness when it comes to road tripping. But I was rewarded every hour or so with the most amazing rainbows. No, really, THE most amazing rainbows with vibrant colors and several that made full arches. I have no photos of those rainbows. Pulling my phone out of nav and pointing it out the window while I was traveling 75mph down the highway seemed like a bad idea. I wanted to get those images. To record them so I could share that experience with others. But I didn’t.

Felt like the universe’s reminder to me that starting something in decidedly miserable conditions doesn’t portend for continued miserableness. Felt like the universe reminding me that beauty appears suddenly and, if you blink, you might miss it. And felt like the universe reminding me that, while we live in a society where ‘it didn’t happen without photographic proof’ is the default, magic that remains unrecorded in traditional means, is still magic and can always be recorded in my heart and mind.

 

(I did, however, take a few pics Santa Barbara. Spending some quality time with my son was pretty priceless and, while I don't NEED a photo to remember, these photos and the reminder of that time make me smile.)






Thursday, January 5, 2023

Day 4: Walking in the Rain

 

The second Pineapple Express/Bomb Cyclone/Winter Storm arrived yesterday late afternoon and, by all accounts, it was less severe than expected. That said, I spent the better part of my early morning wandering my favorite community walking spots only to find most of them overcome with the ocean.

As I explained to an out-of-state friend who was doing a status check,

We are fine. Super wet and awed by the power of the ocean but high enough that we're not flooded and no big trees too close by. I do have some epic pictures and videos of this week's craziness and today at 11:30am our swell is supposed to peak. I'm obviously impressed but have been shocked by the times I've heard lifetime Santa Cruzians say, "Oh my gawd, I've never seen it like this before."

Instead of my typical 40-minute lighthouse out and back, I spent over two hours hugging the coast - high enough to be out of danger but close enough to be a little nervous. As with the tsunami early last year, the neighborhoods were filled with residents turned lookee-loos but storm swell watching feels markedly different than rubbernecking a wreck. No one is injured and we are all just checking on our community and simultaneously basking in the pure power of nature. Seabright Beach, Main Beach were completely consumed by water. Enormous trees, roots and all, were bouncing out the mouth of the San Lorenzo River. The combination of high tide and a storm swell caused flooding in the harbor parking lot. By we were all on solid land, sharing pictures and thoughts and experiences. My walking path back through the harbor was closed and so I enjoyed taking the long way home. As with most long walks, I met new friends, saw old ones, and returned home with fabulous photos and clean lungs.

I came back just in time for another deluge and to see others' online photos of much more destruction than I'd seen. People will be sad. People will be angry. I feel for them. Home is sacred. And should feel safe.

I came back to a warm home. Transparently, our roof leaking a tiny bit in the fixer-fixer upper, but our new windows are fantastic and I’m grateful to be safe and dry. And now to figure out what part we can play to help those who didn’t fare as well in the storm.

 (pics may be unremarkable to those unfamiliar with the area but suffice it to say that there is usually a lot more sand in those views and I usually circle the Walton Lighthouse every day)






Wednesday, January 4, 2023

Day 3: Digital Dread

 

Upgrading technology fills me with dread.

The idea of getting a new laptop or phone triggers much more anxiety than anticipation. Don’t get me wrong, I love access to more storage and the improved camera technology that seems standard for my every two- or three-year upgrade cycle. But inevitably, there seem to be challenges that come along a new device.

Am I making the right product choice?

Am I paying the right price, or should I wait a week, a month, a year?

But, above all else, I mostly fret about the data transfer.

The sad reality is that I do not remember most of my application passwords and therefore must resign myself to a week-long transition between old laptop/phone and new laptop/phone while I reset all my passwords. It’s mostly a hassle but I worry that I may lose photos or contacts or something else that I didn’t even realize I depended on.

This year I upgraded my phone.

The whole process was a bit of a fiasco, having ordered the phone I wanted and then having that ordered cancelled by Samsung for reasons still unknown to me and to my carrier. I went into a Verizon retailer to find out why but there was no information. Since I wanted the expense to fall into 2022, and Verizon couldn’t make that happen (they bill you when it comes in), I ended up purchasing an unlocked phone through Best Buy on 12/30.  Rather than attempt the dreaded transfer myself, I brought it into a local Verizon store after the new year and patiently waited in the post-holiday craziness for someone to help me initiate the transfer. M was the same woman who had tried to help me before. Again, she was cheerful, kind, helpful and got me started on a transfer - explaining that, once the data transfer was complete, I could change the SIM card and I’d be good to go. After nearly three hours, all 16K+ photos transferred, and my old phone and new phone deemed the transfer ‘successful’.

With some level of eagerness, I collected my new phone, changed the SIM card, and made my first call. It worked. Then I went to make my first text…

And my breath caught in the center of my chest.

I had no texts. Not one.

My old texts didn’t transfer.

My texts. My years long message history with friends and family.

My “Random Wednesday Love” and “Digital Deep Breath” exchanges didn’t port over to my schmantzy new Samsung. My texts with my kids who are off and away exploring their 20s and not available for a conventional quick hug weren’t there.

And completely absent were my last exchanges with friends who are no longer ‘on planet’.

I felt myself beginning to cry.

Okay, I did cry – it’s been an emotional damn week.

Then I looked at my old phone. Still there. I could still see my last exchanges with Chino, with the Beths, with Ellen, with Angela, with the Loris, with Sandi, with Silke and with so many, many others. While I was grateful to know the messages had not disappeared into ether space, I was still more than a little upset I would have to carry two phones if I wanted to carry those messages with me.

And I DO want to carry those messages with me. I’m sure there is some diagnosable condition for that level of connection to characters on a tiny screen and, whatever it is, I’ve got it.

I downloaded a separate app that would ostensibly allow me to transfer phone to phone items and managed to bring over my call logs but not the texts so the next morning, I braved the elements (it has been rather dramatic here weather wise) and went back to Verizon. M was there and I could barely articulate my issue, getting stuck on the emotion as opposed to the tactical need. She understood anyway, clicked a few things, and started another transfer. As I left the store she said, “I don’t mean this in the rude way, but I hope I don’t see you again.” I felt like hugging her. “Same,” I replied and smiled pensively.

By the time I returned home, all my apps and messages were on my new phone! This time the transfer was truly successful. I was on the verge of tears again but these were tears of relief.

As expected, I can no longer log into over half of my mobile apps (so expect some additional lags with Facebook, Instagram, Twitter, Strava, etc.) but after the more gripping concerns over my text history, I’m more than comfortable just knowing my digital hugs are back in my pocket – safe and sound.  




Tuesday, January 3, 2023

Day 2 on Day 3 of 2023: No Lessons Here, Just Observations

 

Just now I tried to write directly into the blogosphere and realized that typing into that medium fills me with digital stage fright. While I know my plan is to post this missive, regardless of what comes out, I feel much more comfortable blabbering on in a simple, empty, title less MS Word document.

When I consider how odd that is, it feels like a little Jedi mind trick that I play on myself. And it makes me curious as to how many other mind tricks I play, consciously or unconsciously, on myself. Bubbling up in the tricks department is my habit of boxing in my sadness or grief or anger by reminding myself that life is actually amazing. And, while this is not untrue, because life IS actually amazing, the ‘perspective shift’ game I play with myself likely creates a false impression with others that I am an insanely always positive person.

I am not.

I get sad. I get overwhelmed. I feel defeated. I feel despair.

However, unless you are one of a handful of people in my life that I trust implicitly, and feel is well suited to holding me as a burden for a bit, you won’t see that part of me. Even if I trust you implicitly, you may not see those emotions from me.

Honestly, I’m a total hypocrite in the emotions department. I regularly tell people that they should allow themselves to ‘feel all the feels’ but I tend to limit myself to the socially acceptable public feels. Perhaps I need to work on this. Perhaps I don’t exactly know how.

Since it’s a new year, perhaps I could add that to my list of intentions for 2023.

But I’m not going to hold myself to that level of personal re-education on day 3 of the new year. Instead, I’m going to chalk it up as an observation and be kind of proud of myself that I said it out loud. I own that behavior. Maybe if I own it, I can change it?

Perhaps, I’ll pressure test feeling all the feels a few times and see what happens. Or perhaps I’ll just think a little bit about why I’m so averse to giving myself that permission.

There is no lesson here. Not now anyway. But I’ve ‘written words’ two days in a row and I’m gonna allow myself to feel all kinds of proud of me for that today.




Monday, January 2, 2023

2023 Intentions - A day late

 

2023.

In a couple of holiday conversations with family and friends, the idea of new year resolutions came up. I’m not a big one for resolutions (mostly because they feel more like pre-meditated failures) but I do enjoy the new year as a fresh start and like to begin with intentions. My intention for 2023 is to lean back into my writing. I committed to writing every day and am posting in an effort to hold myself accountable.

Yep, I committed to writing every day in 2023. To process my thoughts, my emotions, my concerns.

But it is the 2nd of January and I’ve already f*cked it up.

So be it. I’m starting on the 2nd.

Writing has always been the best medium for me to think my things. When I talk to people like a normal person, I get distracted and sometimes stuck. When I talk about hard things, I worry about how other people will interpret my tone of voice and whether or not I will start crying and woefully misrepresent my point. When I am angry, I worry that I will be too sharp with my words and inflict permanent damage on those that I care about.

But when I type, it all flows. Wandering as heck sometimes but definitely flowy.

And when my emotions are stuck someplace uncomfortable, writing about them helps to unstick me. Writing can help me take anxiety out of my body in a choncky little blob so I can look at it, poke at it, unblobify it and then move on.

I stopped blogging regularly when my kids entered high school and a friend of my daughter’s announced she followed me on Twitter and read my blog. Sharing publicly was always part of the process of being seen, heard, and held but, I wasn’t ready for that level of sharing where my kids’ could potentially find out things about me, my health, my feelings, before I’d had a face-to-face conversation with them.

So I pretty much refrained from using the blog for working through deep thoughts, made a few general update posts after major events, and then kind of stopped blogging. And then I stopped writing. And then COVID… and empty nesting… and grad school… and a household move.

And no, I didn’t just transfer to a more private venue like one of the 97 gazbillion journals that clutter my home. I stopped all together. Essentially at a period in my life where I desperately needed my writing, I gave it up.  

Now I’m reclaiming what was always mine – my thoughts, my emotions, my reality.

Trigger warning for those who may have stumbled across this blog for cancer support or parenting camaraderie – beyond messing up frequently while navigating a 20+ year marriage and serious trial and error efforts to meet the evolving needs of newly adult children, my life intersects regularly with things that society doesn’t talk often about including serious illness, dying, and death.

I don’t know what I will write about but, at this point, I’m choosing not to censor myself so please consider this a heads up. 

And now… here’s to the best of 2023 intentions complete with a photo from my morning walk.

Sending love, light, and good energy into the universe. More tomorrow. 




Sunday, February 13, 2022

Relevancy, Muddling & Sleep Deprivation

 

Honestly had to look back to figure out the last time I posted a blog and to remember what the topic was – the pandemic has created a bizarre timeline of history in my mind. Basically, when it comes to history, it was either ‘before the pandemic’ or it was ‘last week’. There really is no in between.

As it turns out, it has been 18 months since I typed out my thoughts, feelings, and bizarre ruminations and shared them with the world. And, eighteen months ago, I was evidently struggling with relevancy. While sometimes I can’t remember what I had for breakfast, I don’t need to re-read any of my words to remember that struggle. Just the word ‘relevancy’ brings it all back. Or rather re-surfaces many of those emotions along with many of those rhetorical questions.

If I were to depend solely on the words in my post to remind me of those feelings, I would think my existential questions and struggles revolved solely around my place in the world as an advocate.

But to trust those words alone would be to lean into a half truth.


I am struggling through just about every aspect of life.

Struggling through advocacy, parenthood, marriage, friendships, career, and generally just my place in the universe. I can’t remember if I struggled pre-pandemic, in fact, somedays, I feel as if those days prior to March 2020 are forever locked in a box right next to the box that holds all my ‘before cancer’ days.

Candidly, these days it feels like a crapshoot on what I should be fretting about and trying to fix.

So somedays I just cry.

I’d love to say that I cry, look up at the sky (or now out at the ocean), find my inner She-Ra and persevere, like I so boldly stated 18 months ago but, lots of times, I just cry, get frustrated with myself, and then cry some more. Am I depressed? Hell yes. Am I anxious? Hell yes. Do I feel alone? Sometimes.

Am I paralyzed with fear about tomorrow and wanting to end it all? Actually, no. Not even close.

COVID-19 took away my coping mechanisms. The pandemic has taken away the gym, conference hug fests, concerts, and leisure travel. Reactions to COVID-19 measures have created a wedge between me and some people that I love. I’d really like to blame all my tears, and everything I see wrong in the world, on the pandemic, in the same way I used to blame everything on Tamoxifen.

But it’s not just COVID-19.

It’s racism, it’s poverty, it’s climate change, it’s inequity, it’s suffering.

And it’s a societal norm that seems to pale in comparison to the issues above but feels like a gut-punch on the daily.

Societal norms say that in my 40s I am supposed to be smart, sassy, confident, ridiculously self-assured, and basically just nestle into my womanly bad-assery. But I’m not feeling like a bad-ass. I’m feeling like a new empty-nester, recent coastal transplant, and older graduate student who is struggling through the pandemic and yet another effed up reality known as perimenopause.

Dude.

Like DOOOOOOOOOOOODE.

Pregnancy hormones were rough on me, and Tamoxifen was its own clusterf*ck but this perimenopause thing is simply a whole ‘nother level up of effed up chemical confusion. And… NO ONE TALKS ABOUT IT. Like no one. Well, some of my girlfriends do when we’re hanging out together but… that’s right… minimal hanging out in the past two years.

Instead, I’m reading about how my late 40s are supposed to be filled with crazy confidence across all realms of life from bedroom to the board room while I’m actually sitting on Zoom calls and crying midday because who knows why.

The tears are likely due in part to sleep deprivation. I haven’t had a full night’s sleep in over a week. And we are not talking about five hours versus eight hours of sleep. We are talking about waking every 80 – 100 minutes like “I’m on fire” and flip flopping around in bed for an hour before maybe getting another 80-100 minutes and starting the cycle again. I’ve switched rooms, leveraged the couch, tried melatonin and herbal tea. Nothing is working. The whole rigmarole feels a lot like the newborn breastfeeding night sweat era, but I don’t have the benefit of an oxytocin-high and baby snuggling to counteract my dead ass tired.

So… there you have it.

Still struggling 18 months later.

On my good days, it feels more like muddling and, for that, I am grateful.

I’ve no asks and I certainly have no answers. Just putting out a bit of reality to get it off my own chest. So thank you.

Thank you to the women who have commiserated with me and who have offered me helpful hints on ‘getting through the change’. Like a gazbillion other women who have had a hormone positive cancer, hormone replacement therapy (HRT) is not an option. I’ll stick with diet, exercise, and routine with the hope that eventually sleep will happen. If not, I’m totally going to dose myself with Tylenol PM and hope for six straight hours.

When I’m feeling generally good (which is NOT today) I remind myself that getting old is the gift that I hoped for after my diagnosis but, most days, I just lob questions to people who’ve been down this road before, shed some tears, and b*tch and complain about things. If I’ve learned anything in my life it is that you cannot use logic to address an emotional issue. Well, you can but you do so at your own peril.

Today, I’m imbibing no logic, just making myself feel relevant by hanging all my reality on the outside because I know, I am absolutely positive, that there is some other woman out there, feeling alone, a little sad and a lot frustrated in her perimenopausal, pandemic-complicated life.

Thursday, October 22, 2020

Relevancy.

 

Today I’m struggling with relevancy. The relevancy of what I do as well as the relevancy of who I am.

Beyond the emotional and logistical rollercoaster that is launching children in the middle of a global pandemic with missed milestones and unmet expectations; and beyond the likely normal “who am I after nearly two decades of mothering two humans that are now outgrowing me?” the struggle around what I do for a living has me flailing a little. A lot.

I am an advocate. A patient advocate. A community advocate. A research advocate. A policy advocate. Sometimes I’m an independent advocate; sometimes I’m attached to a non-profit organization; sometimes I’m employed by a company that I feel shares the ethos of truly making a difference, not just making a dollar.

Sometimes I have a fancy title; sometimes I’m just ‘patient advocate’. Sometimes I get paid for the value I bring; sometimes it’s a volunteer effort. Regardless, I’m always me and bringing my whole self to the table. I try and use my voice to share information that can become knowledge and to build bridges between people, resources and opportunities. And I help others find their voices and build the confidence to use them. I connect people to people because I believe that we can always learn from each other and are fundamentally stronger in every way, shape and form, together.

I am perpetually grateful that my family and my situation affords me the luxury of doing what I love to do and yet…

I am effing struggling.

How am I changing the narrative? I left my career after my diagnosis because there was a gap (an actual abyss!) in cancer care. The world was talking about Personalized Medicine but had forgotten to include the ‘person’ in the conversation. Over 1.5M people were being diagnosed annually with cancer, in the US alone, and we weren’t learning what we could from their experiences because data was being siloed and stories of real people and real experiences were getting lost in the shuffle.

I wanted to change that.

I wanted to make a difference.

And, while I realize making a difference comes in all forms, I don’t feel I’ve changed the narrative. Now we have over 1.7M people being diagnosed annually with a cancer in the US. People are still dying. The disparities in cancer care and outcomes remain stark. People are still calling during that ‘oh shit’ moment after diagnosis; people are still experiencing financial toxicity; people are still suffering through treatments that target cancer but don’t consider the impact to the person’s whole self.

It’s ALL the things.

But mostly it’s the premature death. And mostly it’s the fact that despite the efforts of myself, hundreds of advocates and thousands of scientists, people are still suffering from cancers that we cannot control, never mind prevent.

And, maybe after that, it is the narrative that cancer is something to be ‘beaten’ when, in reality, cancer continues to fester and grow inside most all of the 17M survivors, either literally with metastases and progression or figuratively through the physical and emotional after “effucks” of diagnosis and treatment.

That’s it. That’s the punchline. I am struggling.

I don’t need hugs or love or affirmation. I need to find my place. I need to document my goals and objectives so that when I have these crises of faith in what I’m doing, I can show progress. I’m sure it’s there. I just can’t see it right now.

It may be the pandemic. It may be #Pinktober. It may be what feels like a rash of new diagnoses among my previously non-cancer friends. It may be compounded by kids in a launch phase. It may be the bizarre extended family drama. It may be the even more bizarre support group drama. It may be the beyond the pale bizarre political drama. 

It may just be a really bad day. 

But it’s here. If I’m honest, it’s been here for months and I’m finally remembering (AGAIN) that a bit of putting down my thoughts helps me get it out.

Once it’s out I can name it, look at it and begin to address it.

As I’ve word vomited this post, Lisa B Adams has popped into my head. She was the first individual I knew who was living while dying with metastatic breast cancer. I found her posts a stark picture of the reality I wanted to help change and yet I found her perspective on the world uplifting and comforting.

Today I’ll choose to focus on her words. She shared them frequently and they became a mantra for many of us in the advocacy community:


Not sure of my place in the world today but I do know there is much beauty here. And I will find it. Or create it. And then I will share it. I will persevere.