Bonus Mode

In Houston, I worked for an awesome nonprofit called Writers In The Schools. WITS employed poets, playwrights, and fiction writers to do writing workshops with kids. It was an amazing organization and an amazing job. The founder, Victoria Jones, hired me as her first employee, telling me she had enough money to pay me for six months. After that, it was up to me. I left a little over five years later after getting my MSW, and WITS had about ten staff, stable funding, and we were in a Menil House.

There’s an incredible museum in Houston called the Menil, and its patron purchased a bunch of houses around the museum and rented them to artists and arts organizations. We had one directly across from the front entrance, and had a program specifically dedicated to bringing in elementary school kids for tours and writing lessons. The museum itself ranges from African art to modern, with sculpture, impressionist, and just about everything. My favorite was the surrealist art, especially Rene Magritte.

So, in his honor, I am calling the latest mode the Magritte mode. I am not quite seeing a bunch of bowler hatted men dotting the night sky, but it’s not far from that. The visual, let’s call them distortions, are truly challenging reality. Things are moving. A lot. And they are creating contrail lines, as if there are echoes of everything. Arms and legs seem a bit misshapen, and I have now completely been flummoxed by how to put on a shirt twice. And socks once. And today I had a existential crisis when looking at our spoons, as they seem to not be designed correctly. Can’t really explain how they were wrong, just a little too MC Escher to be useful as a utensil. I am checking my reality with others, just to make sure. Fortunately, when I asked Jill yesterday “do you see the topless dude on the neighbor’s roof eating Cheerios?” She did in fact see him. I don’t need to know the why, just happy the what was independently confirmed.

I had a bonus MRI yesterday, just to make sure things hadn’t gone ziggy-zaggy (shout out to kids book “Russell the Sheep”). The moderately good news is that the tumor has not increased, and kinda looks smaller, which is the long term point. They redoubled the steroids, meaning I am likely headed toward sumbitch by next week. People keep comparing my new look to Walter White in Breaking Bad, so that might fit. I’m a few days from the end of treatment, bald, looking like a meth dealer, inside a surrealist painting, and by the way, brave Dr. Valliant quit me yesterday. And I have been so compliant. More on that some other time. But the finish line looks close. Too bad it’s also in motion.

Hair-o-wing

I know, just a variation of an earlier Cancer Dad Joke. 

Yesterday, I embraced electively bald.  Went to the Supercuts and had them buzz most of it off.  Oddly, still had to answer the "square or round" question about the back that I thought this decision superceded.  Sadly, my just-joined-the-marines look wasn't quite right, so last night Jill helped me go the rest of the way.  I tried to convince others in the house to join me, but had no takers.  Thinking of shaving the orange cat, but can you force solidarity?  Plus, he would likely scratch me to death.

My biggest worry was that I would look like an alien from Mars Attacks!  I think the look is much more Lex Luthor than crazed alien.  When I told my brother I was heading to elective bald, he sent me a meme of Telly Savales saying "who loves you, baby?"  What I love about that is that no matter how old I am feeling right now, the act of sending me a Kojak Meme shows that Stacy is even older.

I have met moles I never knew existed.  And realized that I need a bit of time in the sun for my really really incredibly white head.  Thinking of keeping the bald and growing a bushy beard to embrace my inner Austin hipster.  Though there is no way I could do that, and if I have an inner anything, it's an old Jew kvetching.  Oy vey.

Excellent!

The "nitrous" went away.  The whole world-is-moving hasn't.  I'm close to being able to describe it, though, so there's that.  I'll call it the "faulty film strip".  Like I am seeing frame after frame of motion from things that should be more continuous.  But on everything, not just personal hygiene and the three branches of government.  Anybody else remember film strips?

This adds to my realization that reality is a very subjective thing.  I know that the things I am looking at are not technically in motion, and I am not seeing them in discrete time intervals.  I mean, I think I know that.  My brain tells me this isn't how things work, but is also the reason things are working like that for me.  It's a paradox.  And I should know, I have several pairs of docs these days (Cancer Dad Joke!).  My brain also knows that things are in fact in motion, so maybe I am more in tune with the earth rotating?

It all goes back to Keanu Reeves.  Or, maybe more accurately, to the Matrix movies.  I seem to be fixated on the chlorine smell. Or maybe, chlorine gas is messing with my thinking.  Many layers here.  Once I truly believed the board certified oncologist that the chlorine smell in the machine that goes "Zap!" is all in my head, I experimented a bit.  Here's what I figured out - I only smell the chlorine if I am breathing in, and only if I am breathing in through my nose.  If I hold my breath or breathe through my mouth, no chlorine.  So, the radiation is triggering something that makes receptors in my nose (smell buds? ) smell chlorine.  There is the Zap! to activate, but the smell is not there until I breathe.  Though the smell is not there IRL.  And my brain has a library of smells with labels, like chlorine.  I don't believe these came pre-loaded, like fonts.  My scientific conclusion is that I have smelled chlorine in the past, filed that smell with a tag "chlorine", and that radiation is activating my smell buds (certainly there is a real name for this, and likely one that when I hear it will make me feel stupid for not remembering), so that when I breathe it attaches the chlorine tag to normal, non-chlorinated air.

This might seem trivial.  And as I am writing this, my keyboard, fingers, screen, and even the orange cat are moving frame by frame.  So, sorry, where was I headed?

Right, Keanu Reeves.  The Blue pill.  Live within an entire world created within your mind.  I may not go that far, but I now have some serious doubts about "objective reality."  Certainly what I hear, see, smell, taste and feel are heavily influenced by my brain, and there is no way it completely meshes with everyone else's objective reality.  Dude!

Well, maybe this experience has brought deeper meaning.  Like reality is subjective.  Not quite what I was expecting, but seems appropriate for these times.  Or maybe the time I am living in is not reality?  Believe me, that is one thing I am holding out hope for.  Though my "reality is subjective" insight is closer to "I see that as green" while "you see it as avocado", and not "the insane cheeto did not really get elected, did he?"

Reality does truly bite.

Consequences Without Actions

This weekend the other shoe dropped.  Actually, the first one did, and then the second one.  All of my footwear fell.

The world-is-spinning feeling persisted, and invited some of its side-effect friends.  Specifically the “one second delay” where I have felt out just a bit of sync for three days.  And then the “nitrous”, in which every 90 minutes or so it feels like I am prepping for oral surgery and have inhaled just a smidge too much laughing gas.   That fast pounding feeling in my head, derived from either the dentist or (so my friends told me) things they called “poppers” that they got from the Whip In in college.

These feel much more seizure-y then anything else I have been experiencing. Reached out to brave Dr. Valliant, who said this can be expected close to the end of treatment.  So he added a steroid to my pharmacological buffet.  Said it may keep me awake and/or make me want to eat.  Combatting fatigue and the chemo diet?  Love you, Dr. V, but maybe I coulda added this one earlier?  Looking forward to getting buff.

So now I am getting nitrous side effects without a tooth removal.  Fantastic.  If I have to get drug and alcohol side effects without actual usage, why can’t it be like something like ecstasy?  I can neither confirm nor deny any actual first-hand knowledge, but from what I understand, it can give you a feeling of euphoria and an overwhelming feeling of love for all.  Thus the name. And can allegedly lead to near religious experiences in the produce department of HEB #4 circa 1988, amongst the amazing variety and colors of produce.  So I have been told.

About a week and a half left. I can say, without reservation, this whole thing sucks.  Zero star Yelp review for “brain tumor.”

And Now, This

I have been a long-time fan of Monty Python, for many reasons.  One of the things I love is their original shows, that utilized the narrative device of "And now for something completely different" to change directions completely.  John Oliver shortened this to "And now, this" which is a more succinct way of stringing together completely random things. Or, as Sheryl Crow says, apropos of nothing. Which is to say, what this post will be.  I understand that my narrative transitions are tenuous in normal times, but linking thoughts seem to be even harder during treatment.

"Squirrel!"

Wait, before I leave the topic of Monty Python, just wanted to add "I'm not dead yet!"

And now, this.

Hotel Dreams
My vivid, mundane dreams have been focusing of late on poorly designed hotels.  Last week, I had a dream that I was staying at the Ramada in Milwaukee (don't ask me why Milwaukee, perhaps the chemo drugs are manufactured there).  This particular Ramada had hallways that led to other hallways, that led to further hallways.  I was vaguely annoyed.

Then, a few days ago, the dream was moved to a Holiday Inn (city unknown).  For the life of me, I could not find my room.  I walked through the convention hall, which seemed to be hosting a conference of chocolatiers.  When I got to the back hallway, the rooms were non-sequential.  Room 120 was next to room 355, which was across the hall from room 1100.  An objectively terrible numbering system.  I went back up to the front, but the front desk was closed.  The giant candy store next to the front desk had opened, however.  Yes, there is at least one easily identified theme at work here.  I started wandering around the hotel, and eventually found someone who worked there.  I told him I was looking for room 466 (actual number, unsure of significance), and he led me to this hallway that had a staircase.  At the top of the staircase was a multi-colored tunnel that I would have to traverse to get to room 466.  I assessed that I could make it, but that my yellow (!) hanging bag likely would not fit.

Probably some deep meaning here about seeking, journeying, finding your own path, blah blah blah.  Or maybe I just need a Twix and a roll of Spree.

Somewhat related to that...

Self CBT
I am engaging in a bit of do-it-yourself cognitive behavioral therapy, despite the fact that I have no training in it, and only a rudimentary understanding of what it is or does. 

Beyond some very specific times when I have had seizures (from moderate in January to comprehensive in May and a couple of short ones on Mother's Day), I can attribute all of the rest of feeling bad to treatment - hospitals stays, spinal tap, medication, chemo, and radiation.  As long as I believe this, I can continue to believe that they will go away when treatment stops.

Tuesday, I had a couple of micro moments where it felt off.  Not full-on third person disassociation.  More like second-person.  Not "Bob Dole is turning on the water in the shower", more like "you are turning on the water."  [certainly, I realize that's an old reference.  I find myself pining for Bob Dole these days - a person with whom I can disagree with on a multitude of issues but still believe in his integrity].

Then yesterday, as I was walking down the very wide hallway at work, I found myself unable to avoid running into the wall.  I sat down on the conveniently placed couch, and realized that the proverbial writing on the wall was in motion.  The world was literally spinning.  Or, it was for me.  No, the world does actually spin, so it was literally spinning.  I was just enjoying a new side effect of drinking too much without the pleasure of drinking too much.

That degree of dizziness put the micro incidents into perspective.  Certainly, second-person could have come from dizziness.  And since "May Cause Dizziness!" is a prominent warning on several of my medications, these could be treatment related.  No, these were definitely treatment related. 

I changed the self-narrative.  I did not have micro seizures.  I think that's kinda the jist of CBT.  Again, not a psychotherapist.

Apropos of nothing...

Hair Today, Gone Tomorrow
Yes, I understand that's a dad joke.  Or, as I am re-branding it - a Cancer Dad Joke.  Like: I finally figured out the Keto diet.  I just haven't been hearing it correctly.  It's the Chemo diet.  I've dropped 15 pounds.  Not sure I'd publish books or send out a bunch of spam e-mail about it, but it does work.

Or: Have you checked out my "rad" new hairstyle? 

But, on that topic - Jill pointed out that it is not just the hair on one side that is falling out.  I'm losing from both sides and the back.  I have come to the scientific conclusion that it is only the gray hair falling out.  This may be less "cognitive behavior therapy" and more "the secret."  If you wish it, it will become true. 

I know that my hair has been going gray over the years.  The thing that I hadn't understood until a few years back is that the hair on the back of my head is completely gray, while the sides and front (all of the things I see in the mirror) are just lightly sprinkled with gray.  It was always jarring at the Supercuts when they handed me a hand mirror and asked if I wanted to see the back.  "Whose old man's head is this?  I am only sprinkled with gray."  Long ago, I changed my answer to "No thank you,  I do not want to see the back.  I trust you and the job you've done."  Helps preserve the self-image, and seems to empower the stylist.

So, I don't have any empirical evidence to support my absolutely-true hypothesis, but it is 100% a fact that only the gray hair is falling out.  The hair that had, if we are being honest, given up already.  At the end of treatment, only the strong, whatever-color-my-original-hair-used-to-be hair, will remain.  In small clumps, here and there.  Likely an amazing look.

And then there's this...

Unwarranted Pride
I meet with the Radiator and his Extender every Wednesday, the one day they are in the office.  The rest of the time they are out fighting crime.  Possibly off on Tuesdays.

Each week, they both ask if I am still working, and seem surprised when I tell them that I am still keeping a mostly full-time schedule.  My hair may quit, but I never will.

I derive a small degree of satisfaction and pride in the fact that I am still working.  But if I delve a bit into that, that feels like a fairly trivial point of pride.  They are not asking "So, are you still mountain climbing?" Or, in somewhat keeping with the theme, "Are you still lion taming?"

And finally...

Gratitude
I have talked a lot about gratitude, and how grateful I am to all of the family, friends and others who have reached out, helped out, and generally made this tough journey easier.  I kinda think it's time to say some specific thank you's, with the pre-apology that I will absolutely miss some (gonna throw out the whole "I have a brain tumor" thing as pre-explanation)

Rides to radiation - in addition to my lovely wife Jill (who I am grateful for every moment of every day), I am grateful to Tara, Chris, Eric, Bess, Eric, Bess and Eric for taking me to my appointments.

I am very grateful to my friend Bobby (now Bob), who has picked me up from and taken me to work multiple times, brought me books, and to his whole family (see wife Tara above), who have been enormously supportive.  I posed the following question to him early on:

"Hey, Bobby (I don't add the "now Bob" when we talk).  Want to take a road trip in August?"

See, Jill and I had months ago split up the "taking the kids to college" task.  Alex moves in to Loyola in New Orleans on August 15th, and Abby moves into Trinity in San Antonio on August 16th.  Since Jill went to Trinity and is a Wildcat (a very inside joke), she is taking Abby.  Since I vaguely remember spending a handful of Mardi Gras (is that the plural of Mardi Gras?) in New Orleans sleeping on the floor of my friend Kenneth's dorm room at Tulane, I am taking Alex.  This plan, however, was made before my May adventures.  I may be driving again by mid-August, but I certainly won't have the confidence for the long drive each way.  So, road trip!

Bobby (now Bob) was in.  It wasn't till a bit later that I realized I had sold this to him as a road trip, when in actuality, I was asking "can you drive me and my daughter to New Orleans, help me move her into a dorm room, and then drive me back to Austin?*"  He understood that was the ask.  Heck, we've known each other since 6th grade, which is now more than 40 years ago.

* Turns out that there are parent activities at Trinity the weekend of August 17th and 18th, so I amended my pitch of "Want to take a road trip?" to "can you drive me and my daughter to New Orleans, help me move her into a dorm room, and then drive me back toward Austin, but then drop me off in San Antonio instead"?  My friend Bobby (now Bob), said "of course."

On the topic of people I have know for more than 40 years, I am grateful to my friends Lisa and Karen, who both sent me random greeting cards (cat puns and a birthday card for Jill) in response to my post about the proper display of "Sorry You Have a Brain Tumor" cards.  I ran this by "Dear Abby" and she said "Seriously, dad. Stop.  And why are you writing me letters?  Ever heard of texting?"

I kinda thought this was how it worked.  If you know an Abby and need advice, you write her a letter.  Heck, if I ever meet a Heloise, I will ask her for hints.

I am grateful to Jill's book and wine club, who collectively and individually provided food and transportation that has been tremendously helpful.  And I am grateful to Melissa for the Matzoh Ball Soup; aunt Randy, cousin Jared and Guo Jing for lots of food; and to everyone who has picked me up for a lunch date the last two months.  And to everyone who has reached out by phone, card, Bookface, text, and other methods to send their regards and best wishes. As well as to Edna (not her real name) and her deity, since I still think she is onto something.

My mom and Tom, and dad and Joy, have all been checking in on me regularly, even while travelling across the country.  My brother has done the same, while travelling across the world.  Jill's family has been amazing.  I am grateful to them.  And my Jill. And my Kaileigh, my Abby, and my Alex, who have all traveled internationally this summer, and are all on the verge of new life journeys.

Fully Embedded

I have achieved full undercover status with my cats.  They now accept me as a full member of their tribe.  The large orange boy cat was easy to convince, but it took much more effort to convince Elsie, the cunning black and white girl cat.

Yesterday, I got up, went downstairs, and promptly fell asleep on the couch.  Plus, of late I have been leaving my hair all over the house.  And finally, I have become a very picky eater, and a bit whiny about the food I don’t want.  Taken as a whole, Elsie now accepts me as a full member of the cat family.  I don’t have any plans to groom anyone, but have specific napping and shedding goals.  Not sure what I will learn as an undercover cat, but, really, who gives a shit?  See?  Cat.

My undercover cat status comes with the recognition of a new mode, or likely more of a new level of power save mode.  I worked mostly a full week last week, then yesterday ran smack into super power save mode (aka catatonia).  I actually doubt that I could have gotten off the couch if I needed to.  Jill brought me some food and water, scratched me behind my ears, and left me to my day of doing absolutely nothing.  I was so low energy I didn’t even feel the vague regret that a day of lying on the couch doing nothing normally brings.  The peletons of cyclists passing my house did not stir any feelings of envy, anger, or remorse.  I binge watched Stranger Things, mainly because I intended to watch a few episodes, but the remote was several feet away, and it seemed so much easier just to keep watching.

I am not a person who can do nothing for long stretches.  I generally have a to do list for the weekends. Chores, errands, prepping for an upcoming class I’m teaching or working on lectures / grading if I am teaching currently.  Shopping for groceries.  Planning meals. Cooking.  And now apparently pickling.  My weekend “to do” list is now a weekend “to be” list.  And for this weekend, the one entry is “a cat.”   Check.

Au revoir and Godspeed

Today is the day my hair started falling out. After a brave and long fight, it has surrendered.  This morning, it felt like I had cat hair on my face, in my nose, everywhere. Leo!  Not sure how that cat managed to get so much hair on me, but instinctively, Leo is usually the culprit. Later, I scratched the side of my head and then realized I had a handful of hair.  Slowly, I looked to my right shoulder.  There was an accumulation of additional, non-cat hair.

Still somehow blame Leo, but I have less grounds for it.  Indicted, but not convicted.  My hair hung on as long as it could, but decided that today, July 11th, was the day to die.  The day before Jill’s birthday.

Happy birthday sweetheart!

The Half-Way Point

As of this morning, I am halfway done with radiation (15 out of 30 treatments), and just over halfway done with chemo (22 out of 43).  Email me if you want the color-coded Excel spreadsheet with much more data, regression analysis and projections with confidence intervals.

On long bike rides, I always pushed to get to the half-way point.  After that, the rest of the ride will always be shorter than what you have already done.  Not necessarily faster, just shorter.  With the caveat that no one has removed the route markers (see Wurst Ride, circa 2015).  But I am on the downhill, wind at my back, fully hydrated and in a supportive peleton. Metaphorically.  If I was actually riding, it would be 103 degrees, uphill, into the wind, with pretty much everyone else already finished and halfway home.  But still with no more miles ahead than behind.  Again, assuming the a-holes around Boerne (typically young white guys in pickup trucks) haven't removed all the signs.  Or put tacks in the road. 

I was going to continue the metaphor with mentions of rest stops and spandex, but probably best to move on.

A few random thoughts at the half-way point (I am not committing to a number, knowing my history).

1) Met with brave Dr. Valliant yesterday.  He seemed a little surprised that I was still working mostly full-time.  Made me feel awesome and a bit smug, though diminished a bit by the fact that I actual nodded off for a second while we were talking.  It happens.
2) Brave Dr. Valliant's nurse has magic voicemail.  I leave messages for her, and never get a call back, but magically the things that need to happen happen.  Yesterday, she told me I was very "compliant" in calling and reporting things.
3) I realized how enormously condescending the word "compliant" sounds in this context.  Certainly, in my job we strive for full compliance, with federal funding depending on how well we comply.  But from her it sounded like she was praising a toddler for taking a nap, or pooping.  Both of which, by the way, we actually did talk about.
4) I then realized how similar "compliant" is to "complaint."  Never noticed that before.
5) I asked brave Dr. V about the chlorine smell I get at two specific points in my daily radiation.  I had assumed it was something to do with the operation of the machine that goes "zap."  He speculated that it was something being triggered by the radiation.  Literally - all in my head.  Not fully believing the board certified oncologist, I posed the question today to the Radiator.  Certainly seemed possible that this complex machine (at least 3 Teslas) utilized some specific (possibly poisonous?) gas in its operations.  The Radiator confirmed the all-in-my-head diagnosis.  He also confirmed that the light show I get when my eyes are closed is also brain-induced.
6) Not sure how I am feeling about the realization that radiation is causing both visual and olfactory hallucinations.  While I am a bit relieved that the machine that goes "zap" doesn't light up or use poisonous gas in its operation, I also wonder more about how we work, and how so much of our experiences are influenced by our wiring.  The wiring that is now getting zapped daily.
7) I thought for a minute about seeing if the Radiator could possibly tweak things so that I smelled baking chocolate chip cookies, or babies, or something.  But then realized: a) certainly it doesn't work like that; and b) if the machine is zapping some place with a smell, it is possible it will remove that smell.  I'm fine not smelling chlorine the rest of my life.  But babies?
8) And related to, well, nothing, I have been thinking about greeting cards.  My children have been getting graduation cards, that when opened, have lovely surprises inside.  Cash.  Gift cards.  Jewelry.  My lovely wife has been getting birthday cards (her birthday is this Friday).  I have been getting thinking of you and get well cards.  I am enormously grateful to get these cards.  They reaffirm the love and affection and concern of friends and family.  What I haven't figured out is - what do you do with these cards once read?  Seems like birthday cards and graduation cards merit display for some amount of time.  Holiday cards and letters get taped to the mantle, and stay there till mid-January.  The moment we no longer have empty space and have to tape a holiday card onto another card is a moment of tremendous pride in the Smith household.  Certainly, we love hearing about your year and seeing your family photos.  AND - we like filling the mantle.  Could just be me on this.  Remember, brain tumor.

But I digress.  Are there any guidelines about the proper display of "Sorry to hear about your brain tumor" cards?  I actually wrote "Dear Abby" to ask this question.  But her response was, "Dad. Stop."

Some Data Points

So, nothing definitive yet, but I definitely have some interesting data, religion-wise.

First data point - a few weeks back Jill got a call from an older friend of a family member, we will call her Edna.  We don’t know Edna that well. When she heard about my diagnosis, she called to send  her best wishes and said she was praying for me.  Very sweet.

A few weeks back, she called Jill and left her a voicemail.  It was 6:45 on a Wednesday night, and she wanted to know how I was doing because she was on her way to her prayer group, and wanted to give them an update because they were praying for me. She needed a call back before 7.

Jill: “You should call Edna back.”
Me: “she called you.”
Jill: “But she called about you.”
Me: “I have a brain tumor.”

We never quite reached a conclusion on who was on the hook to call her back, so no one ever did. The next morning was when brave Dr. Valliant downgraded my diagnosis.  This is a clear data point.  A clear case could be made for Edna’s religion being the one true religion.  I’m not sure exactly what her persuasion is.  Remember, Jill refused to call her back.  Pretty sure it’s some charismatic Christian variety.  So, I (or really Jill) may have offended a vengeful New Testament god.  Thought that was more an Old Testament thing.

Which leads to my second data point.  The daughter of a friend of my mom saw my posts about food starting to suck for me.  She reached out and brought me a bunch of homemade matzah ball soup.  It was truly amazing, and helped me actually eat for a couple of tough days when my needle was close to PFT.  Score one for the Jews.

Relevant aside, with the soup delivery and cousin Jared bringing over bread, bao, dumplings, and other assorted foods, coupled with the exchange of pickles to pretty much anyone who comes over, I think I may just have invented a new service - Jew-bur Eats.  Copyright pending.

Third data point - the medications I am on give me very vivid, very mundane dreams.  Like doing an afternoon of yard work.  Or shopping for socks.  Not particularly disconcerting, but a bit odd. Yesterday, I took a nap on the couch (one of my new favorite activities).  I dreamt that a bunch of people from our Unitarian church came over and were visiting.  Some of them had food for a potluck.  Others were here for a book club.  Lovely people.  Not sure why a group of them visited my dream, but they cleaned up after themselves before I woke up.  I’d give a point to the Unitarians, but they’d just share it with everyone, or politely debate the history of point giving and how points never get awarded to the powerless.  And then they’d form a book club about that.

Don’t Ask, I’ll Tell

Seems like I’m in yet another new phase.  I come from a long line of long-suffering Jews.  Generally, the suffering is something you keep to yourself. My Nana was far and away the very best at this.  She had chronic lung problems for the last decade (probably the last two decades) of her life.  You’d ask “Nana, how are you feeling?” And she would smile at you, reveal some small detail like that she was a little tired, then deftly turn the entire conversation.  “Darling, thank you for asking.  How are you? How is the family?” She was a master, and we were all complicit in this dance. Heck, the tribe has been oppressed for several thousand years, what’s a little discomfort?

Well, I am a different generation.  And while I proudly credit my grandmother for helping me see my true path in social services, I clearly did not also get her grace.  That is a fairly high bar for anyone, as Nana Bert was an elegant, graceful woman who had genuine caring and concern and interest in everyone she met.

I do strive for that ideal, but after a couple of weeks of radiation and chemo, I can say without reservation, my suffering-in-silence threshold is pretty freaking low.  Ask me how I’m doing.  I will tell you.  The last several days, I have ranged from somewhat fair to pretty fucking terrible (PFT), with a fair amount of time at PFT.  Feeling somewhat fair, I went to work yesterday morning, only to head back home midday at PFT.  Friends and family ask me how I am feeling, and I have been pretty honest.  It’s hard to know if it’s better to say “I’m doing OK”, or to tell people I’m not.  I know there is a time limit on this - treatments end 7/31.  I don’t want people to feel bad for me or uncomfortable asking.  I truly appreciate the concern and care.  I just know now that I am less of a long-suffering Jew and more of a “have I told you about my sciatica?” Jew.  These are two different species.  So If you ask, I’m gonna tell.  Hopefully I won’t find that I am the third kinda Jew - seeking out people to air my various bodily complaints, without prompting.

I meet with the radiation oncologist every Wednesday, though for simplicity purposes, we will now call him the Radiator. Also, when you pair the Radiator with his Extender, you get a totally bad-ass pair who could be either superheroes or super-villains. I lean toward heroes, but we will see as July progresses.

The Radiator asked me this morning, “everything is going well?”  In my newfound clarity over my self identity as someone who answers that question honestly, I said “no, not entirely well at all.”

Jill pointed out that I totally missed the punctuation. His was a statement, not a question.

“Everything is going well.”

Awesome, happy to hear that.  Really.

“So, am I just about cured?” I asked, knowing for a multitude of reasons that this is not what he was saying,

“Treatment is progressing as expected.”

Oh, he is doing a process evaluation, and not an outcomes evaluation.  We are faithful to the intervention protocol, though we won’t know the efficacy of our interventions until the post-test.  Shout out to all my evaluation nerd friends!

And how are you doing?  And the family?

The Elusive Rainbow Unicorn

A couple of random things from today’s radiation appointment. Each day we visit, which is each day, or each weekday, or more accurately each workday, since tumors don’t grow on weekends or national holidays, we pass the hospital gift shop. The first day, sitting right out front, was this amazing rainbow unicorn.  I turned to Jill and informed her that if things take a bad turn, I might need a rainbow unicorn.  Jill told me “we’ll see.”  I’m a parent, I know that means no. The next couple of weeks, the unicorn was not there.  Must spend time back in its magical realm.

Today, the unicorn was back.  She wasn’t out front, but the sighting was confirmed. I told Jill again, should this become harder and harder, I might really need this rainbow unicorn. She started giving me the mom answer again, but then noticed its footware.  “That’s adorable! It’s wearing tiny doctor scrubs booties.” Jill is on board. If I post a picture of Dr. Rainbow Unicorn in our house, you’ll know treatment has gotten pretty hard.

Second random thing.  You start to see the same people when you come in every day, discounting weekends and holidays.  At 8:30 am, there’s a young guy (20’s or so) who comes in with what looks like his mom or sometimes his dad.  He is relentlessly positive, and always greets everyone. He is almost always singing. This morning, as we were both waiting, Sittin’ On the Dock of the Bay came on. Awesome song, but upon reflection, a bit more pessimistic than last week’s cancer disco songs.  But I love that song, and started singing quietly.  As did my 8:30 treatment partner.  Jill laughed and turned to me.  “You guys should form a duo.”

Treatment partner heard.  “Hell yeah!”  We then did an air fist bump across the room.

Certainly, we will need some practice.  But we already have a name. You guessed it.  Rainbow Unicorn.