Trekking Through The Surreal With Time Melting Around Me

Hello Fellow Travelers!

I like a lot of art, but especially Modern Art because what Kandinsky and Pollack  represent to me is a freedom of spirit and unconventional thinki

The Persistence of Memory - Dali 1931

ng in a painted format.  Marc Chagall painted a couple flying through the night sky. And in a corner is a chicken, I think Chagall had of some kind of livestock in all his work.  I am not a big fan of the Surrealist Movement but there is  painting by Dali that expresses to me how the world looks to me on any given day.  Everything is upside down, topsy-turvy, in a word, surreal.  Dr. A. had to go through the cerebellum to remove the giant tumor (yuck!), when he removed the tumor.  He diplomatically refers to the other (death, and no, I wouldn't like that, thank you very much!) option back in 2011.  (Thank you, Dr. A.)

Several years ago I spent some time visiting a relative in Seattle because he was in a mental health facility.  He had completely lost his mind by then and spoke in partial thoughts and partial phrases.  The person I was with couldn't follow his ever-changing narrative, but I sort of could.  His mind had snapped completely but talking to him was kind of like surfing - I just tried to follow him and hang on.  In one instance he was a policeman, ten seconds later he was fishing.  I didn't feel sorry for him I kind of got it.  He died soon after our visit.  Another example of surrealism in real life.

I definitely feel like I've unwittingly been preparing for  (something) years and it's my duty to work harder and longer every day.  I hate (yes, hate) this wheelchair, but a lot of positive results have come from this experience.  And I will happily tell anyone about the results as soon as I can speak!

"I'm Tired!" Lily von Schtupp, "Blazing Saddles"

Hello Fellow Travelers!

I hesitate to tell you about last week's visit  UCSF but this is supposed to be an honest reporting about an everyday person's circuitous journey through the morass of cancer and Western medicine, wherever that journey takes me, so I am compelled to share.

I saw a "motion specialist".  She was helpful, smart and kind.  She seemed pleased by my physical and mental strength.  She prescribed a very low dose (and I mean really low - 1mg) of valium that is supposed to relieve some of the dizziness which I identified as my number one problem.  It is the key to everything else.  If I can stop the earth from falling away I can begin to repair the vast damage I've been living with since 2011.

I also let the good (and heartbreakingly young!) doctor know how great I feel (Thank You, Dr. Aliabadi!) and how motivated I am (Thank You PS!).  Dr. Motion (not her real name, but I haven't asked her permission to use her name) was thorough and blunt.  The chances of me significantly improving at this point are somewhere between slim and none.  My physical prowess and "take no prisoners" attitude persuaded her that I might be that rare patient who succeeds, who doesn't die (from cancer anyway, although I'd hate to think I've gone through all this to ultimately get flattened by a bus)  My MRIs are "remarkably unremarkable", to quote my oncologist.  I guess that's a good thing.  Then why was I let down?

Of course, I'm taking the medication.  Of course, it has no effect, I knew it wouldn't.  We'll follow her instructions to the letter and I have absolutely no faith that any pill in any amount will have any beneficial effect whatsoever.  My expectations were low, on the bright side, I got to meet another brainy brain professional, I'll see her again and I had a visit with my fabulous in-laws!  Why was I disappointed?  I've given this considerable consideration and you know what it is?  I'm tired.  PS is too. We're both exhausted.  It's that simple.  And that complicated.  We're just "plum worn out". Just living is really hard work these days and the adventure is nowhere near over.   The boys don't share in my 24/7 good feeling,  my whole world is drenched in sunlight in a way I can't even describe let alone share.

My best friend might be right; maybe I am looking for a "big" solution that fixes everything, but I don't think so.  For one thing, I don't think such a solution exists.  But, when you are tired and everyone seems to answer every medical question with some form of "I dunno" any solution looks plausible.  When the act of swallowing requires a five-step process by the end of the day you're beat!

PS wants to see "Maleficient", whatever, it's a rare opportunity for me to eat CANDY!  But it has got me thinking about Oz and the W3 (Oh, you know the Wicked Witch of the West, the unforgettable Margaret Hamilton) she terrorized poor Dorothy with a few props.  One of the scariest object d' art is the giant hourglass, it's the object that spurs me on and haunts my dreams.  I think of it often, that giant hourglass with the sand running out.  Time always wins I just need to utilize every minute I have!  I believe in neuroplasticity but I still have hope at UCSF.  Hope is good, right?

Invalid? Or Just Invalid? Does It Even Matter?

Hello Fellow Travelers!

My teenaged son does not enjoy reading.  So what do I make him do?  Whenever I get the opportunity?  I make him read to me of course!  Car-trips, gym sessions, doctors' waiting rooms are all good places to "get your read on", in my opinion, and since my opinion is the only one that counts (What do you mean you "don't like to read?"  Learn to like it!) all opposing views will be summarily squashed.

Lately, we've been attacking the 9th grade literature syllabus.  So we flip back and forth between "Romeo & Juliet" and "The Catcher in the Rye".  "Catcher" is pretty easy to decipher, "R & J"?  Much more difficult!  So as the boy muddles through the Olde English, we let most wild mispronunciations go uncommented on (I mean come on, they don't talk like this on GOT, so who needs it?) but occasionally the lad manufactures a word or two that's unintentionally hilarious!

On our way to a Giant's game in The City we had time to read!  Patient Spouse and I lost it because our son somehow derived "Lambicide" (CSI-Lambicide/starring David Caruso, this fall on CBS) where "Lammis Tide" was and "beauteous" mutated into "Bucius"?  (a feminine Southern gentleman?  A pit bull?  Who knows?)

In our frantic paced, over-connected, multiple deviced world "The Bard" can seem antiquated and WTH?

As much as words mean to me, I have to take particular issue with a particular word that's as negative as an adjective as it is a noun - invalid.  Whether it is a person in a wheelchair or the validity of your driver's license nobody wants any part of either kind of invalid.  It instantly negates the person/document/whatever as worthless and illegitimate.

Despite my own intense dislike for them and out of absolute necessity I got a new wheelchair.  It's the same basic, stripped down model I had before and I hope will be very temporary.  In the meantime I was cleaning the wheels and peeling off the stickers when I came across the company name and logo - Invacare.  It might as  well be subtitled "Where Dreams Go To Die!"

Any wheelchair represents an acceptance of physical limitations I think of as temporary as being permanent. I will never accept the wheelchair as anything other than a temporary solution.  I have legs.  I was meant to walk around.  I'm a stander not a sitter.  A wheelchair completely robs the individual of his or her identity.  Mostly, all people see is the chair.  I am determined to ditch this thing ASAP.

If you put any part of the word "invalid" in your logo, you're probably not going to move a lot of anything you're trying to sell.  It's not hopeful.  It's a major buzzkill!  Can you tell how I still feel about these stupid chairs?  Still hate 'em.  I actually like it that this chair hurts my back!  It protects my posture and motivates me to get out of it faster!  I can put a positive on anything!

All I'm saying is you can put all the nice, "caring" suffixes you want to behind invalid.  It's still a wheelchair and you're still the invalid in the wheelchair!

Survivor Guilt? Important, But Whose Got Time For That? Not Me!

Hello Fellow Travelers!

Cancer survivors all deal with a lot of very personal issues.  I'm always surprised to learn that something I thought I alone was in dealing with, was, in fact, so common it had a name,"survivor's guilt." "Survivor's Guilt," for me, is a sense of questioning why so many others have died and I was thrown back like a salmon in the river in that old Disney movie they showed (and still show) in school.

You know the one where the bears are standing in the rushing water and picking off the determined fish as they doggedly swim upstream.  The fish get their heads ripped off, the bear cubs learn how to fish and "The Circle of Life" continues.

But I have to wonder - am I the salmon or the bear?  Or the river? Maybe I'm the river in this bizarre scenario!  I really have no idea!

"Survivor's Guilt" is a misnomer for a lot of reasons.  Someone important (well, they thought they were) once said, "Guilt and jealousy are the only truly manufactured emotions."   Think about it. It's true! I have never thought very much about either emotion or had much use for either guilt or jealousy. "Guilt" has a negative connotation, like you've done something to feel guilty about or feel bad about.  Nothing could be farther from the truth! I feel great! Better than ever! Release the Cracken! Bring it! Guilt/Schmilt! Whose got time for that? Not me!

Being left alive and cancer-free has motivated me in a way that only those who have come up really close to Death and Death said,"Nahh!" can truly understand. I spent the first half of my life curious but with no clue. Since the tumor removal, I think more clearly. Everything makes sense again; the fog has been lifted. I know who I am. I'm a starving writer!  (Really, I'm always hungry!)  I know what I have to do.  I don't know if I can actually do it or not, but I have to try.  And never stop trying!  This adventure that is my life is in another phase, if I can survive this part I'll find everything else I'm looking for.

Time is working against me. I'm very aware of the passage of time and the fragility of human beings!  Like laptops, we don't bounce when we fall on hard surfaces (Young People Pay Attention! This applies to you too!).  I feel a lot more breakable, a lot more"vincible" since cancer upended my life. I've broken arms, ribs, a hip for good measure, and each break was really painful. Compared to brain surgery?  Breaking bones is more like Tinker Toys! No comparison!

Do you ever watch "Game of Thrones" on HBO?  I do, and people on that program die like flies in all sorts of imaginative and colorful ways. I feel like I should strap on a sword just to watch this program!  It's that intense! Post tumor life is like GOT. I always have to be strong and ready because I never know what I'll have to deal with. MRI? OK. Dragon?  Remote Possibility  2 Dragons?  Still remote but you never know. Falling down because I have 0 balance?  Happens almost daily.  Grim Reaper always around?  Always! We have cappuccino together in the morning, he's a righteous dude!

It doesn't matter if I'm the bear or the river in the Disney movie (as long as I'm not the salmon, please let me not be the salmon! You know what happens to the salmon! Yuck!), what matters is what I do from here on out to maximize the time I have left on this planet. It's the last inning, the fourth quarter and I'm finally taking control of my game.  And it's scary and unknown and deadly serious, fun doesn't enter into it.  Good thing I ate my Wheaties!  (And cookies but mostly Wheaties)...

PS - Did I tell you I'm finally reading Salinger's "Catcher in the Rye"? Well I am!  I always liked J.D., and I don't know how I missed "Catcher," but I did. It's full of self love and loathing (turned outward) and snarky humor! And a crazy hat!  It's awesome! No wonder it's required reading in schools! (and required carrying for assassins of unarmed celebrities).  Go Giants!