December 16, 2015: Sandwiches and the defiance of Steve

Sandwiches and the defiance of Steve

Journal entry by Felicia Friesema

 

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I’m going to repost something here that I put on my Facebook wall yesterday because it bears repeating.

I’m being so raw, so open, and so transparent not because I’m looking for sympathy. I’m doing it to purge and help me focus. I am also doing it because I’m hoping that this experience will help inform other people who might know someone else who is going through the same thing. More often than not it is harder for people to empathize and understand a thing unless they have been through it themselves. My underlying purpose is to help alleviate suffering by detailing our own. It’s uncomfortable and ugly and maybe even a whole lot of information you’d rather not know. Tough shit. This is what it is. This is how it goes down. And if I can break through cynicism and lack of humanity and get someone to open their eyes and hearts to the suffering of others, mission fucking accomplished.
So, I was going to talk about sandwiches.

One of Steve’s favorite foods is a well crafted sandwich.  He once went on a local mission to find the perfect ratio of bread to spread to meat and must have tried everything from local banh mi to old time French dips to hoagies.  When I make him sandwiches, they are multi-layered flavor bombs with custom spreads, pan toasted breads, various meats, and various pickles and/or grilled veggies.  When he has a good sandwich, his eyes roll back in his head and he nods as though agreeing with some unheard response to a question about the meaning of life.  He can find God in a sandwich.

And now a sandwich has found him.  Or rather Lauren and Peter Lemos of Wax Paper in Frogtown have.

Lauren and Peter Lemos are the best of public radio nerds who live, breathe, and yes actually eat NPR.  They name their sandwiches after various hosts, local and national.  There’s an Ira Glass (avocado, cheddar, sprouts, pickled and raw red onions, cucumber, garlic aioli on “Bub and Grandma’s” bread) and, dear to our hearts, a Larry Mantle (herb bologna, capicola, provolone DOP, mama’s lil pickled peppers, lettuce, red onion, oregano vinaigrette).

And now, there is a Steve Julian.  All the proceeds go towards Steve’s medical care.  But really, you should probably go because this sandwich is all about praising the lard and Lauren and Peter have created a nice little slice of LA.  I haven’t told Steve about it yet, but when I do I think he’s going to insist we pick one up for him.  It’s smoked pork loin, jalapeno vinaigrette, pickled carrots and daikon, cilantro, and bacon fat miso aioli.  One of Steve’s favorite sandwiches in the whole world is the pork banh mi at Good Girl Dinette in Highland Park (They have been working food miracles for us since he was diagnosed.  Love you, Diep.), and while this doesn’t have GGD’s seriously addicting cilantro-maggi mayo, bacon fat miso aioli is the kind of umami bomb Steve loves.  Peter and Lauren — Thank you.

Our thanks to our dear friend Stephanie for pulling the strings and working the magic on this one.  If it raises $5 or $500, I don’t care.  It’s such a perfect gesture and I know it will bring Steve a pocket of joy.  That’s priceless to me.

I could probably drive to UCLA Medical Center blindfolded now.

Yesterday was our neuro-oncology visit and while the team was amazing and thorough, most of the news was a stab to the heart.  Because Steve’s mobility is seriously compromised, he is likely an auto-reject for any clinical trials.  This was a major let down as his tumor is so aggressive and advanced.  Immunotherapy has become this beautiful golden apple for so many cancer patients.  It’s sadly out of reach for many, largely due to distance and cost.  Part of the reason we selected UCLA was for access to all the latest clinical trials, including possible immunotherapies.  And now because his cancer has advanced so quickly, he will be unable to participate in those trials.

Dr. Lai was compassionate and understanding and completely candid, all the things we’ve come to expect and respect from our doctors at UCLA.  And I wanted to choke him.  Closed doors never feel great regardless of where they lead.  This one stung in a way that brought out a darkness in me.  Obviously no choking occurred.  I’m not a mindless, violent neanderthal.  But the feelings I had were that primal, especially coming off the previous day’s lows.

The beautiful thing is Steve wants to try anyway.  And the social worker we met yesterday thought that physical therapy might help him become eligible again.

Oh, the social worker.  Dearest Cheryl, who in four hours did more for my sanity than anyone else had for the previous four days.  She nailed every answer, made every call, asked hard and important questions, and answered mine with genuine care and concern.  She raised new concerns (this ordeal is going to be way more expensive than we had originally thought) and guided us to new resources.  I wish we had spoken to her the day we arrived.

I asked for her because we have a friend, Julie, who used to be a hospice consultant and is a cancer survivor and cancer caregiver herself.  She and her wife Mary (a dear friend of Steve’s) read my post yesterday and immediately reached out.  I took feverish notes as we spoke.  She gave me a checklist.  She gave me priorities.  She gave me a breath of fresh air.

The information and the emotions that come with a cancer diagnosis are so enormous that they cripple and stall you.  You cannot think straight because every two seconds, you’re grieving.  And all the regular trappings of your life don’t stop.  The pets have to be fed, the laundry has to be done, dinner has to be made, the bills have to be paid, and on and on.  Cancer diagnosis, the doctors, the medications, the added bills and expenses, the reams of paper explaining every procedure, the forms to be signed and filed and faxed, the calls, the appointments, the new daily care of a loved one — all of this is piled on top of your regular life and all of it takes priority.  I couldn’t think straight.  I’d look at the pile of bills and paperwork and the row of pill bottles (which is about to grow) and something inside me would collapse.

How do you know where to begin when you are watching your husband try to remember where he is?  The answer is you don’t.  You need other people to think for you.  And Julie and Cheryl did this very thing for me because they already knew where my mind was.

Today we go in for a CT scan to prep him for radiation.  Chemo will happen concurrently with his radiation treatments, giving the tumor and his body a double punch.  He will either respond well or he won’t.  We’ll know more about four weeks into treatment.

Don’t ask me what will happen if he doesn’t respond to treatment.  We all know what that means.

Last night he remembered to wake me when he needed to get up.  And he did it in the sweetest way.  He stroked my face and kissed my forehead and whispered my name.  My name!  That’s my Steve.  My sweet, defiant husband.  He’s pushing so hard to just be himself.  He forced himself to stay awake most of yesterday just to give the middle finger to the fatigue that has been dogging him since surgery.  He even asked me to help him walk around the house, and while he did, he pointed to things that needed fixing or straightening.  He knew when things were out of place, and maybe more importantly, he was actively participating in our home.  I didn’t know how long it would last but I did everything he asked me to.  I wanted to encourage this new verve in him.

Even with these gruesome sutures in his head, he’s still the most handsome guy.  I told him so and the smile he gave could have lit LA.  He’s not vain.  But the first time he saw his shaved head and his surgery scars in the mirror, staples and all, and the iodine stains on the hair that was left behind, he visibly blanched.  Who wouldn’t?  But he is still easy on the eyes.  Those baby blues aren’t dimmed.  That smile is still the thing that jolts my heart.

I’m just beginning to get a better handle on what I need done around the house and for meals.  I know so many of you are chomping at the bit to help, but I honestly haven’t been able to dive into the details at all.  Right now we have plenty of food.  Craig came by installed a new showerhead and did laundry.  Steve ate one of Diep’s banh mis on the way to UCLA yesterday.  Amanda delivered her miracle cookies (These salty sweet oat flour disks of joy…Steve devours them.)  I stuck a chicken (delivered by Linda) in the crockpot yesterday morning and had melt in your mouth bird waiting for us when we got home.  Today Collin is helping me with some car issues.

Right now, the logistics of a smooth life are impossible without all this help and more to come.  I am incredibly grateful and humbled by it all.  You have all taught me some indelible truths about life and friendship and I am forever changed by your generosity of self and spirit.

Thank you.

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