Cry

Day +1507: 

It’s often hard to adequately describe what November’s are like for me since his diagnosis. I spent that first Thanksgiving by his side at UTSW, also my birthday that year, while we watched via FB our family road trip to MN for a family gathering. It was really hard. On so many levels. 

Yet the years since almost grow in emotion for me, both ends of the spectrum. I long for simple, quiet, lovely. But the whole month of November is just a lot of hard memories and it’s gone from my absolute favorite month of the year, to my least. Both from the first admit and diagnosis to the first month home after transplant the next year, I have lost my love of this time of year., replaced with resolve to just make it through.

Side note:  Your brain holds on to negative experiences more.  We've had some greatness during November as well, but by brain likes to get overloaded with the tough stuff.  

Last week, in doing some cleaning, I came upon a box of cards from 5 years ago. It was so bittersweet. And clearly a reason why cleaning is a bad move! I sat there, reading each one. A box I had kept stored away for all this time. 

And the tears flowed and flowed and have kept coming all week. 

I really meant to thank people more, clearly, since I also found dozens of blank thank you notes alongside all your cards. So, please know those cards still mean a lot to our experience and healing and I had very good intentions. 

There are so many articles written about the patient. How cancer effects don’t  stop past remission and how the emotional toll is still carried. And I worry so much about this for Wil...all the freaking time...that the ongoing toll for this post-caregiving wife, sneaks up on me during these anniversary months. I’m very good at “keep on keeping on” days. But this week of Thanksgiving I realized what a toll that takes on a marriage when you don’t let your partner take up the slack. And when you don’t let yourself sit in the feelings. 

To be honest, our marriage is not perfect and cancer has taken a toll, especially lately. We are no more a poster couple than anyone else. And we, like I’m assuming by the stats, aren’t alone. Illness makes relationships more stressful. Why aren’t most people talking about it? It’s just one more painful thing to be vulnerable about (and be judged by) when the rest of your tribe wants to see that you are perfectly well and stable.  And happy.  It's a bummer, but I really value honesty, so I am trying to be more transparent here while still being respectful to everyone else. 

Side note:  Our love is not smoke and mirrors. It’s real. It’s just that our mutual pain and unshared experiences make healing feel like an unchoreographed cirque du soleil show on speed (let’s face it, our journeys are so different. And not in sync on hardly any front, ever!);  We are two imperfect people struggling along at the same time in very different directions and speeds. The pressure to appear OK and “blessed” at all times is overbearing if you don’t monitor it closely. I preach it y'all but I still fall victim to it.  Blessed is not pain free. Pain is useful if handled with care and attention. 

So, other than my near perfect dogs I’m obsessed with, that’s what I’m most thankful for right now. The big shifts of emotions and pain. Pain?  Yes. Pain that I couldn’t sit with before because we were busy surviving. New life comes through pain. Growth comes with pain. So I’m sitting this month and maybe next month. Maybe the next year. I’ve told my pain I’m here and I’m not leaving until all the books and crannies are heard and loved. I’m crying again which I haven’t been able to do in quite some time. I’m evaluating. I’m trying to lay down the struggle and just let it flow. Figuring out who I am in this life post-caregiving. According to society I should celebrate getting fired from that gig. Right?  I’m here to tell you it’s still a loss. Especially since you’re not transported back to life pre-cancer once the caregiving ends. Especially since you mostly just feel lost and alone in the experience of caregiving to begin with...and apparently end with...

I know it doesn’t make sense to everyone.  Wil has said it doesn’t even make sense to him. And he’s pretty good about trying to get it.  I know it may not be apparent to just anyone. Until this week it was only partially apparent to me. And life is a mix always...I’m just a mere human making my way through this next segment like so many others, I’m sure. Maybe it’s my upcoming birthday. Maybe it’s the anniversaries. Maybe it’s the drama that I’m too exhausted to fight with anymore. But I’m feeling ready to just be actively broken and not try to pretty it up for anyone.  Maybe even say “I need to be taken care of too?”  

Perhaps this whole past year I’ve been gearing up to the this holiday week breakdown where I finally just metaphorically lay myself on the ground in fetal position and be swallowed up in post-grief-grief (I just made that up. But it’s certainly a new level of grief to wade through, past the cancer stuff). It’s the only way I think I’ll be able to get through to the next layer of life. I’m keeping faith that I’ll salvage real relationships with the people who get it, including Wil. 

November has had enough drama for me for a lifetime and this week really cemented by resolve to stop carrying all the perceived failures. Mistakes?  I’ve got plenty. I just don’t need to fix anyone else’s or beg to be loved by doing or being anything I’m not. 

Let this be the year for some cleansing. And maybe, some more writing. 

Much ❤️

Full

Jenny here.

It’s been awhile since I sat at my desk and cried about Wil.  Yet, here I am today, doing just that, for the overwhelming culmination of events…although it’s been quite some time, I still get caught up in emotions some days more than others.  My work cube seems to be the place to cry.

Today we are in the midst of packing for a little weekend trip to Tulsa to meet up with some family, and I am so excited for it.  Emotions are already high for me because of it and I cannot wait to spend some quality time with sisters and nieces/nephew.  This has been a year of leaning into not having our own kids, through adopting another dog, and cherishing the time with extended family, especially the little ones, in lieu of our own best laid pre-cancer plans.  It’s been good though.  Wil is tutoring a niece, taking nephews to movies, teaching another niece to drive, helping his mom out.  These are the sweetest moments for him.  He’s exhausted by the time he gets home on those days, but filled to the brim with something no words can capture.  Something better seen and felt…but it’s there and he’s full.  There’s never a pain free day for him, but he’s killing it at school and with family time.

You see, it’s Day +1456.  And it’s probably been a week since I looked at the day count.  It’s always running in the back of my mind, but not in the forefront anymore.  I’m wearing lipstick these days.  I quit Diet Coke. I’m breathing.  Stretching.  These are the things that don’t make the most dramatic of blog entries.  These are the bricks of rebuilding a person though.  One by one.

Side note:  And this might be TMI, so fast forward if you’d like.  There was a time, more than 1,456 days ago, that I was so in the throes of cancer treatment with him that I had damaged my toe and not even realized it (the pain OR the fact that the nail had turned black) until the nail fell off.  Yes, so unaware, so numb emotionally AND physically, that I was that out of sync with my own pain.  I had plenty of pain, but my pain was all focused on the task at hand…either helping him survive, or prepping to grieve him if he didn’t.  Through this duality, nothing else mattered or was even noticed.  To ask someone to take care of themselves during a time like that is the most common phrase you hear as a caregiver.  It’s a good idea.  But how do you take care of yourself when you can’t even locate your own pain or be present with your own body?  I am still working on this area.  I am still trying to be more in my own body these days.

Next week Tuesday, October 9, 2018, Day +1461, Wil will celebrate his 4^th anniversary of the second stem cell transplant.  While we won’t meet with his oncology team for this year’s testing results until the next week, we will still raise a glass to the day, eat some shrimp, take a nap, and breathe in this milestone (and I promise to update you all on the results).

But y ’all.  It’s also likely the first day of work for Wil in over 5 years.  Now, he has been assisting me with projects at my private projects along the way (maintaining the networking and website), but I am talking, PAID, not family business work.  This week Wil accepted a part-time position with the community college computer lab where he will assist students.  It’s the perfect thing.  No benefits, so he can stay on my sweet health insurance through my work, and not full-time, so he can continue classes.  And a first job related to his new field.  Finally, something to start filling that resume, plus some extra bucks to attack that credit card used during treatment. 

This brings me back to now.  Sitting in my cube, tears in eyes.  The mascara might take a hit tonight as I let the intersection of events next week soak in, but the lipstick?  Fully on, as a symbol of much more, as we step into the next chapter of our Life 2.0.

Much Love.

Nothing But Blue Sky

Jenny here. 

Day +1353:  I know, it’s been too long.  Today though, is just a quick, in the moment update.

I am a day dreamer by nature.  As a kid I would lay on the grass in the summer and watch the clouds.  Still today, if I have an extra hour at my office, I might lay on the couch and look out the window.  I also have a view from my 8^th floor desk at my cube job.  It just brings me peace to look out at the expansive sky and wonder.  

I need alone time to think, even though I am an extrovert, and time to process.  I am an overanalyze and research forever…but even so, I have a strong internal compass and when I decide to do something, and I feel it’s right, I don’t hesitate to act.

Lately we have just been feeling so connected to life and overwhelmed, in the good ways that are full of love and light.  We have been quietly moving along in healing.  Some days easier than others.  Cancer made any thoughts of fertility a scientific experiment, with no guarantees, extreme expenses, and with the anxiety of cancer coming back… a major hesitation.  So our ideas of family life have started to shift to what family life is in the now versus what we thought it would be. 

There is a lot of grief and heavy lifting in moving your dreams along towards change.  It feels more like pushing a 5 ton rock up a gravel road than some sort of transformative, spiritual experience of lightness.  It’s tiring and lonely.

During cancer, a quote I kept at my desk was, “Bak skyene er himmelen alltid bla,” a Norwegian sentiment that translates to “behind the clouds there is always blue sky.”  I have hung on to that simple statement.  The blue is there, it will appear in time.  Even when you are tired and lonely, just hold on. 

And this week it did, on Father’s Day, in the form of fur. 

We would like to introduce to you all, KYLO.

 

Side note:  Yes, yes, THAT Kylo, as in a reference to Star Wars.  But not because he is bad.  In fact he’s pure sweetness.  Our first date was to Episode One, so you know, for life our marriage is connected to Star Wars.  But hang with me for a minute…Don’t you think if Kylo Ren had had the chance to have a secure attachment to his mother and father and not be shipped off, he may have built healthier relationships, been able to feel more compassion, and cope with difficult feelings in less deadly ways?  Our little Kylo was dumped off at the Dallas Shelter (a kill shelter), ears full of ticks.  He was so distressed they put him up front by reception where they jokingly said he was a cry baby.  All the other dogs we had looked at were not available.  Then there he was!  Crying, just wanting to be held.  I am hopeful with the right attachment, security, and attention from us, our little Kylo will avoid the dark side…Folks, this is what happens when you take a social worker to a Sci-Fi movie!  My questions/comments are NEVER the same kind of questions Wil has after watching films! 

 

In Latin, caelo (Kylo) is also the dative form of the word caelum, meaning sky.  He is in fact, not the baby we thought we would have, but he is a little one who needs care and a home, and our hearts are pretty happy right now having him around.  He’s our blue sky, behind all the clouds.

 

So far we are settling in and getting used to each other.  I am certain the love will grow from the tolerance we now share, just a few days into this adventure.  Wil is enjoying, for the first time ever, being the point person for dog training and house breaking since he’s home all the time.  He’s so happy.  For real.  (Just wait for all the pics and videos!)

 

Kylo is not what we went looking for and, other than being a Chihuahua mix, didn’t really check off any boxes we had going in…but he’s just good enough, in the right ways.  And we are just good enough in the ways he needs.  And when a family of good enough comes together?  Even from the brokenness, that’s where REAL magic can grow.

Much Love.

 

 

 

 

 

Let It Break

Jenny here.

The number 26 is the May date of our anniversary.  It’s also my favorite Paramore song, ever.

I feel as though I have all but abandoned this dear blog that has meant so much to me and Wil and journaled our walk through cancer land.  There is no sense trying to capture all that has gone on since I last wrote in June 2017, but I will include some pictures of events and happenings at the end of this entry. 

Gosh, I don’t know how many other cancer blogs I have read throughout the past few years that, many times, just end.  No caption.  No note to say if the person lived or died.  There just comes a last entry, that maybe wasn't intended to be the finale, with nothing more after.  It leaves you to wonder, and that’s not what I want to do here.

Life 2.0 is moving right along for us, with all the ups and downs of regular life.  Somewhere during 2017, I think we turned a corner and started to define our 2.0 life together.  Another layer to this thing.

I once attended training where the presenter said that the last stage of grief, acceptance, was more than one layer.  There was seeing acceptance, knowing life is what it is, which could still include anger and fear…a few levels in between I can't recall...and then down the acceptance line, there was a resting place of acceptance.  Those statements have meant a lot to me in my work with clients.  You can still be making progress, still be working through and into acceptance, with struggle by your side.  It’s not about finding anything.  This last acceptance phase is more a state of being.  The whole thing is a philosophy that time + active healing, could take you to still more places than you are right now.  But you need to allow the process of acceptance to continue to evolve to get any deeper than just seeing it.

I have been thinking about that a lot lately--All the layers that 2017 included for us.  Maybe we are somewhere in between the seeing part of acceptance and the being part.  It's progress all the same.

Recently our apartment complex replaced our 1939, single paned, windows for new fancy double paned versions.  Mind you, this window project started about 6 months ago.  They had anticipated it would be a simple process.  A few weeks at most.  First, new heat/ac, then pop out the old windows, insert new ones.  Easy.

And then they attempted the first apartment. 

Nearly every window, painted shut from 78 years of apartment life, would not budge.  Thee ones they HAD opened (well, cracked them and couldn’t even get them to shut again), wouldn't even allow them to remove the old fashioned a/c units that were jammed in the windows.  They promptly gave up for a few months, seeing it would be a much more labor intensive project than expected, until the weather cooled down.

Watching them literally bust out every window on our apartment a couple of weeks ago, and have to clean up the shards of glass and splinters of old wood, made me think of one thing:  life after cancer. 

No gentle replacement to life before.  The only way we have managed to move along that acceptance continuum is to just let all the windows break.  And then one by one, cut, sand, and seal into place new ones.  I’ve had bit of nostalgia watching the process of disposal at our apartment take place.  Every day, the dumpsters filled.  Not a single window intact.  The salvage DIY’er in me felt sad.  Yet it was the only way.  And now?  Perhaps we have less history in that place, but we have fully functional windows that I absolutely intend on opening, as much as I can, to let fresh air in.

Our life windows are open now too.  Wil is in his last semester to finish up coursework so he can take more of his certificate exams.  He’s still got his eye on pursing his Bachelor’s degree after he is done with this semester.  His health has been OK (same old, same old, chronic pain with some days better than others).  We had a little scare around his 3^rd stem-versary in October (yes!  He made it to year 3!) regarding his kidney function.  Just another “shit that happens after intense chemo” side effect.  They are monitoring it and he’s OK for now. 

I am plugging along at 3 jobs, but I adore 2 of them, survive off the other one, so life is pretty good.  I am fully trained in EMDR now and working on my certification hours while being supervised.  I have some dreams now again.

I may be back on here soon, or we may just be out living life for now and not processing through every little thing.  But I promise to not disappear forever, because this story is long from done.  And for every heart break that we’ve shared, I still hope to document some of the moments that are mending and replacing the shattered-ness, all along the acceptance trail…the experiences  that are sealing us up again.

So now, here is where my heart is at in terms of the cancer crap, in the lyrics of Paramore and pictures.  Look it up if you’ve never heard it before.  My heart aches and tears flow at the bridge…every single time. 

Much Love.

 

“26” Paramore

[Verse 1]

Man, you really know how to get someone down

Everything was fine, until you came around

And I’ve been chasing after dreamers in the clouds

After all wasn’t I the one who said

To keep your feet on the ground?

Man, you really brought me back down

Road trip to MN:  July 2017

MN Grandma’s 90th Birthday Bash: July 2017

First Certification Exam Passed!

[Chorus]

Hold onto hope if you got it

Don’t let it go for nobody

And they say that dreaming is free

But I wouldn’t care what it cost me

Summer Fun:  August 2017

Paramore Concert:  September 2017

[Verse 2]

You got me tied up, but I stay close to the window

And I talk to myself about the places that I used to go

I’m hoping someday maybe I’ll just float away

And forget every cynical thing you said

When you gonna hear me out?

Man, you really bring me down

3rd Stem-versary Dinner:  October 2017

3rd Stem-versary Dinner:  October 2017

[Chorus]

Hold onto hope if you got it

Don’t let it go for nobody

And they say that dreaming is free

But I wouldn’t care what it cost me

Thanksgiving 2017

Thanksgiving 2017

Thanksgiving 2017

[Bridge]

Reality will break your heart

Survival will not be the hardest part

It’s keeping all your hopes alive

When all the rest of you has died

So let it break your heart…

Jen’s Birthday 2017

More Birthday 2017

[Chorus]

Hold onto hope if you got it

Don’t let it go for nobody

Hold onto hope if you got it

Don’t let it go for nobody

And they say that dreaming is free

But I wouldn’t care what it cost me

Salon Day:  December 2017

Still Enjoy Our Naps:  December 2017

Star Wars Release Prep: December 2017

Little Reminders: From 2014

Niece Birthday Dinner:  January 2018