December 30, 2015: The Brain Cancer Lethe and the new definition of Hive Mind

The Brain Cancer Lethe and the new definition of Hive Mind

Journal entry by Felicia Friesema



It is not always a graceful experience here.  Both Steve and I have recently discovered pockets of anger in this journey.  They always happen when we are pushed or pulled too far in any direction, which as we get more and more tired, becomes a much shorter distance to achieve.

An example – one evening I forgot to give Steve his sleep aid and he was getting up every two hours.  Mea culpa.  If you’re well, you can flub your medication schedule a bit without any huge impact.  Skip a pill?  Take it the next day.  With big illness, your medications aren’t subtle.  They do big things to your body and over time shift the balance of your internal chemistry in such a way that if you don’t keep to your schedule, bad things can happen.  In this case, he lost a lot of sleep.  Which means so did I.

About the third time that he woke me I started to snap.  I was angry at him for being so obliviously non-sleepy.  I was angry at myself for missing his pill.  I was angrier still that when I finally did give it to him, it wasn’t working.  So I got angry again at missing an important chemical window.  And then the big finale, I was angry at him for not only not knowing why he wasn’t sleeping (he can’t remember his pill schedule, that’s entirely my job) but also because he had no idea why I was angry at all.

This is a man who has spelunked my emotional climate for years.  He knows every detail of what makes me tick, what my buttons are, and most importantly, how to help me through it all when I can’t see the forest for the trees.  Oh he knew I was angry.  But for him it had no known origin, and he was incapable of responding to it in his usual, soothing and sweet way.  He could only be hurt, which he was.

After I pulled myself back into a reasonable space, I mourned.  Deeply.  That raw moment of tiredness, anger, and shame made me realize a loss I hadn’t fully recognized.  One of the glorious parts of our relationship has always been this exquisite emotional balancing we accomplished for each other.  When either one of us lost sight of the genesis of our more extreme emotions, the other would steer the afflicted person back to reason and then help work through what happened.

There are still moments when Steve is lucid, aware, and fully present for me.  They aren’t reliable or long lived.  But they happen.  And if they happen during a moment when he catches me crying or upset, he responds as he always would, and it feels like we are still we and that I still have my Steve, my rock, my champion.

My challenge, my hurdle right now is that I can no longer expect that Steve to be there.  And when the sorrow gets deep or the anger too aroused, I am entirely alone with myself.  I can navigate it.  I can do the digging into the deep dirt.  But it’s so much harder and more painful without his loving and compassionate help.  My trust in him was so complete.  He brought color to a black and white world.  I can still see the images, but they’ve lost a lot of subtlety that needs to be worked around.

His absence in those moments is a chasm.  I trust in his love for me, even when he forgets my name.  But all the usual symbols of our bond – the give and take, the mutual help, the emotional support, the desire to please and ability to be pleased, the general simpatico, the tango of our loving relationship – are no longer consistent or are just gone.

In a moment of particularly stabbing sadness, I told Larry’s wife Kristen through choking sobs that it would never be the same.  Everything we had built was about to crumble and I couldn’t stop it.  She had sagely said then that, yes, everything would be different, we would be different, but we would still be a we.

We are.  It’s a very different kind of we.  I mourn the old we, the pre-cancer we.  And when it resurfaces in those brief moments of clarity, I both cling to it and am repulsed by it, because I know in a few minutes or even seconds, it will dissolve into mist and I will be left alone with only the memory of it.

Steve doesn’t even get to keep the memory.  There used to be such fervent frustration when this happened because his awareness of memory loss was still acute.  If we  mine this tragedy for shards of light, one might be that his failed memories make it possible for him to experience a new form of balance and acceptance.  It is a land where he walks in unchallenged oblivion, which brings its own kind of peace.

In ancient Greek mythology, Hades is a land of fields, caves and rivers, each with particular meaning and import in the progression of the afterlife.  One of those rivers is the Lethe, where the dead must drink in order to forget their earthly life.  This tumor is a kind of Lethe for him, an early sip of deathly obliviousness while he is still living.

It is both painful and soothing to witness, one of many harsh and confusing juxtapositions in the life of the wife caregiver.  People can tell you this will be a hard road, but until you’re on your way, you really don’t have any concept of what that means.  There is nothing that can fully prepare you for this.  The only thing that keeps me from a total collapse is love.  For him, myself, our community, our home, our dogs, our life even in its current shattered state.

I think that if you don’t have that when you step onto this road, it becomes almost impossible to knit yourself back together when you unravel.  Spend your life cultivating that love wherever you can.  Let it become a garden beyond your own wild imagining.  Bathe in its scent.  Let it saturate every part of you.  If you’ve been withholding it for fear of being hurt, stop.  It will be the foundation of your resilience.  The risks are worth all the rewards and it will carry you through hell and transform you when you reach the other side.  You may look back and not recognize yourself at all.  You my even resent the changes within you because at first they will remind you of so much pain and loss.  But you will be whole again.

This has been my mantra these past few days.  I am broken.  I am rebuilt.  I am broken again.  I am rebuilt again.  Am I stronger each time?  Am I more than what I was?  Maybe.  I don’t know.  But I know that each time the lift gets harder, I struggle, but I still lift.  I still want to lift.

Steve started his treatment plan this week.  Radiation every day at UCLA for six weeks.  They strap his head into a mesh cage formed specifically to the contours of his face.  He lies still on a table while they aim invisible beams at his brain to kill the tumor.  The appointments are set in advance.  When you arrive you don’t talk to anyone.  You scan an ID card they give you on your first day and sign in on a computer.  It works like the queue at a Verizon store, except no one in this room really wants to have their name called.  Each patient is at a different stage of their treatment.  Some are excessively agitated or in pain, unable to stay still or be touched.  Some are exhausted and sleeping.  Some can walk.  Some can’t.  It’s hard to tell caregiver from patient in some cases, as both are so thoroughly wiped out.  In our case, it’s obvious.  The patient is the one in the wheelchair with the surgery scars on his head.  The caregiver is the one behind him with the bags under her eyes, carrying the notebook that has his medication list and all his scheduled appointments.

One advantage of having him in a wheelchair – when we are on the elevator, I pull him closer to me and I drape my arms around his neck.  He leans his head back onto my chest and blows me a kiss.  I kiss the top of his head.

It is very hard to leave him with the radiation techs.  It is an agonizing 20 minutes.  He comes out looking unscathed but the effects manifest when I get him back into the car.  I have to come prepared to treat pain but not so prepared that by the time we get home he can’t get out of the car.  He might get agitated or he might sleep.  It’s a toss-up.

My sister is with us for a few days, helping me get a better grasp on what I can tell people to do.  I’m blind on how to delegate, in part because so much stuff requires immediate attention.  You could, say, help clean up after the dogs, but I’m not good with letting it all sit until someone can arrive.  Some of the truly helpful stuff manifests in a moment.  While I was getting Steve dressed for his appointment yesterday, I asked Nita to put together a bag of snacks and beverages for us since I knew he’d need something before we got home.  One might say to pack these a week ahead, but if you saw our diminishing counter space – it’s being crowded out by medications, gifts from well-wishers, excess inventories of Gatorade and snack foods I can’t fit into the cupboards, etc. – you’d probably shake your head.  Nita has been helping with this.  She’s very KonMari and declutters like a pro.  And even with her organizational skills, it’s still a bit maddening trying to prepare in advance for anticipated needs.  It’s a metaphor for how crippled I feel when people ask what they can do to help.  It’s not that I don’t need it.  It’s that I have no really clear way to tell you where to begin.  Part of that also has to do with maintaining as much privacy and peace for Steve as I can.  Hard to do that with a constant flow of people coming and going.

I know privacy is a luxury we’re going to have to let go of soon.  I’m sure I’ll be forgiven for hanging on until the last possible moment.

Steve is still in the early stages of his treatment plan, but we both are experiencing a sort of dread of some of the potential negative outcomes.  He’s not resentful about any of it, and has an almost zen like acceptance of all the cancer hubbub going on around him.  When I ask him what he fears, he shrugs.  Conversely, when I ask him what he needs, he often points to me.

Or he points to a glass of Gatorade.  It’s a bit of a tie right now.

I’m going to start interviewing caregivers next week.  If you have a recommendation for an agency or a private home caregiver, please drop me a note.  I’ve held off doing this as long as possible but I need drop my reservations and get ahead of the curve.  He doesn’t need intensive homecare yet, but it is fast approaching and I don’t want to be desperately bringing in someone at the last minute who I haven’t fully vetted.

I’ll end this post with bees.  Our bees specifically.  When we redid the backyard last year, we made sure to include a protected space for beehives.  I installed our first hive this past April and they thrived.  The garden was never more productive and their busy pollination duties were a subject of fascination and meditation all summer long.  I often brought visitors down to meet them and they were always well behaved.  The few times I did get stung were because I was rushed, not paying attention, or careless.  Bees force you to focus, to pay attention to subtle cues, to really put aside everything else and be fully engaged with them.  Shifts in sound or smell can reveal whole chapters of complicated stories.  When working the hive, the cell phone is far away.  Distractions are a non-starter.  I fell in love with the hive.  And over time they came to tolerate and recognize me.  It was a great relationship.

I say was because while we were at the hospital during Steve’s surgeries, the hive died.  I had checked on them before I left.  The queen was still laying, although their numbers seemed a little reduced.  They had plenty of honey though and were active and vigorous.  They smelled good and I told them so as I closed up the hive.  “See you next week,” I said.

The day after we came back I went down to check on them and found a pile of dead bees in front of the entrance and a completely empty hive.  This happens.  Hives fail.  In fact, first time beekeepers are often told to start with more than one hive.  Almost 33% of hives fail each year.  If you have three hives, that means you are usually left with two.  A single hive doesn’t fail 33%.  If it fails, it’s 100%.  And you have to start over next year.

It wasn’t hard to miss the metaphor.  The next step would be to remove whatever honey stores were there before the ants got the scent, but I couldn’t bring myself to do it.  One, it’s a ton of work, and two, it felt a bit like an autopsy.  I wasn’t ready, either with available time or emotional fortitude.  Nature and life are unfair.  Things collapse.  It can be a bitter pill.

The day before my sister arrived I decided to get to work.  I brought up the heaviest box first and started to dismantle all the artfully constructed honeycomb they built, carving off empty wax and tossing the honey-filled comb into a bucket.  By the time I had cleaned out the box, I had about 50 pounds of honey comb.  I smashed it all up into a chunky tar-like goo and started straining.  It smelled divine, like flowers and beeswax and sunlight on a hot summer day.

And the taste.  God, the taste.  I’ve had urban honey before.  But I’ve never had this urban honey.  Our urban honey.  It is the color of dark Russian amber and when you shine a light through it, it glows a warm orange red.  They had supped on nasturtium, sunflower, borage, sapote, radish, persimmon, pomegranate, basil, eggplant, pumpkin, pepper, and sweet pea blossoms from our yard all year.  They also went farther afield, tapping into neighborhood fruit trees, yucca and cactus, and eucalyptus.  I had been told by many more experienced beekeepers that honey taken at the end of the year would be bitter and largely unpleasant.  In this case, variety is so clearly the spice of life.

It has a super bright taste with fresh citrus notes at the top and finishes with a light and very pleasing woodsy astringency. It almost reminds me of a top quality British marmalade. Complex and bold and even a little buttery.  It is unlike any commercial honey I have ever tried.  My sister helped me bottle it and we were both lamenting that she had opted to do a carry on for her flight home.  TSA would confiscate any jar I sent back with her.  So we have been enjoying it as much as possible.

A friend had pointed out some of the all too obvious symbolism of losing the hive when we did.  It wasn’t lost on us.  Steve never fully engaged with the hive the way I did, but he did enjoy having them around.  We spent a lot of time together watching them flit from one blossom to another.  The timing was just a little to close, the feelings too raw.  We hadn’t planned to harvest he honey this year.  I wanted the bees to keep it, to help it carry them through what is predicted to be a very wet and cold winter.  The death of the hive made their honey fair game for whoever wanted it.  We decided to supersede the local fauna, albeit with sadness.

After we bottled it all, I changed our tune.

I reached out to her and reminded her of what she said about the heavy handed symbolism of losing the hive. But this was the result — a complicated brew of sunlight and hard work that yielded something extraordinary. If we can place so much weight on the loss of the hive, then surely we can find some symbolism in the final glorious outcome. That if we dare to approach the darkness, embrace it even, pick it apart and work our way through it, we may be the recipients of unexpected gifts.
Thank you, my beautiful worker girls.  This is an amazing gift.  And I’m not talking about the honey.

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