Wednesday, May 24, 2006

5.24.06b, [Guest blog, by Princess] Fear is the Heart of Love

“Fear is the Heart of Love”
21 May 2006

If the price of a plane ticket comes with a guest blog slot, then here I am to claim my prize. Oboy oboy. I got to come for the restaging, which in and of itself was worthwhile for the great news that was disseminated. When presented with the opportunity to write something, I have to admit my initial reaction was that of the student to her professor, "Ugh, what do I have to write about?? I have nothing to say . . ."

Then, too many allergy pills and one Ambien-fuzzed red eye flight later, here are my reflections on the trip, if they might give anyone insight into the experience of being a 'cancer groupie.'

It is a strange moment in life, looking at someone you think you know well and realizing that something is wrong. It gets more complicated, because it's not readily obvious (beyond the flamingly obvious) what the problem is. Small, barely perceptible things . . . new facial expressions that I haven't seen before, new grunts, moans, and sighs through the course of the day, restless motions and twitching throughout the night. The strain of day to day that becomes so pronounced, you'd do anything to help shoulder the burden if it'd lighten his load.

It's the cancer talking and its got a whole new vocabulary. A three dimensional volumetric mass, egotistical and needy, spouting words like 'metastasis,' 'locally advanced,' and 'unresectable' . . . constantly making its presence known. Questions like "Does it hurt?" become superficial, as the answer is usually yes. Better to ask "How does it hurt?" or "How much does it hurt?" and try to deal accordingly even as there is no way for me to understand the pain.

And then comes the balancing job, many balancing jobs for everyone involved. How to be encouraging without pushing too hard? How to be optimistic and not cross the line into unrealistic? How to make plans around a three week chemo cycle, live life from one restaging to the next, possibly even enjoy life when the cancer looms omnipresent.

That's looking forward, to a future that's about as promising as hitting the Mega Millions jackpot. But then looking back: It's the end of May. That puts us at two months down, two long/short months post diagnosis. The rhetorical question of "if you only had __ number of months to live . . . " isn't so rhetorical anymore, and even at this point the process of reflection is rife with thoughts of coulda this, shoulda that, and other such regrets.

Even more complicated than the physical pain that I can't begin to understand, there's the emotional tumult that I am too inexperienced with to even broach. I want to scream at him, like Sam to Frodo in LOTR, "Don't go where I can't follow," but he's already gone it seems. I just have to learn that nothing between us is personal anymore . . . I can't try to read the intent behind his words and actions because there is none– his mind is elsewhere, consumed with more 'big picture' thoughts and battling the daily drudgery.

Somehow, from a vantage point of 3000 miles away the questions only get louder and more insistent. I wonder and doubt, how I can be strong for him when I feel so scared, and really need him to be strong for me? These are moments when the best I can muster is to turn away, or leave the room so at least he doesn't have to see me cry. The voices in my head pontificate on whether it'd be safer and wiser, emotionally, to plan my life with him around, or with him gone. For how long? 6-8 months? Ten months??

There's this unintentional habit that I've adopted of late – I see cancer everywhere and I can't seem to escape it. I try to read a book and one of the characters falls ill. I try to watch TV and all the characters are suffering from bowel distress. There's been a lot of reference to the HBO series "The Sopranos," and I will conclude with yet another. Ever notice how there only seems to be two routes of exit from that series? You can either 1. get 'whacked,' or 2. die of cancer. It's a prevalent theme and coincidentally, all the cancers are GI (gastrointestinal) related. One character in the third season actually dies while sitting on the toilet doing his 'business.' As a threat to a doctor who won't operate on Uncle Junior's cancer, Furio makes the comment "You know, there are worse things than can happen to a person other than cancer." Let's hope this bit of infinite TV wisdom rings true.


lefty said...


princess, all i can say is, your blog was absolutely "perfect". perfect is kind of a silly description but your writing is so straightforward and i kept thinking to myself, "yes, that's exactly how i feel" or "i hadn't thought of it like that".

thank you so much. thank you for being in jones' life. thank you for going to him when he needs someone. you must mean so much to him. we don't officially know you but i can't thank you enough for your place in his life and for intensely caring about him. the depth of your feelings for spot makes me cry-out of gratitude and sorrow.

i want to meet you-this beautiful woman who cares for my brother so deeply and appears so intelligent and real. i'd better end my praise there. i don't want the same thing to happen that happened when frankly guest blogged and generated more comments and underwear than spot.

(i love the spot!) and i think i just fell in love with princess :) see you soon spottie, lefty

Slarry said...

Ms. Princess- what a fitting title for a woman of such depth, such raw, yet eloquent honesty.
I can only thank you for writing down what so many of us are feeling. Maybe we are too afraid to express our feelings and fears-- yet you did so, with such clarity. One couldn't help but be touched by your generous words and heartfelt thoughts. You moved me. And so, I also thank you for your courage, as I continue to struggle with my own feelings, questions, sorrow, pain, anger and sheer confusion of Mr. Jones and his battle with cancer and my own frustration in expressing these feelings. What to do with them? What would help the most?
Please know, dear Princess, how grateful I am to you-- for watching over my brother, for being there and for just being.
There are moments when I can barely move, barely speak-- because of the love I have for mr. Jones, and the thought of losing him are so hard to believe and internalize they end up paralyzing me--
You give me hope that I can be stronger. He is my one true thing. Everthing about Mr. Jones, elevates and inspires me. You too, have done that today with your words and heart.
Thank you again, so much. I am so looking forward to meeting you.
And will forever and always be thankful, for the gift you are in my brothers life. And now, you have also blessed mine.
And to Mr. Jones-- my place and person of refuge and solace, you amze me with your courage and words. I've never been more grateful for my 38 years with you.
You are HUGE.
With love,

spacely said...

hey spot I just can't wait to see your cute sexy hairy butt!!!!!!!!
:) (: While we are in Las vegas I will do some vertual gambling for u.Tee Hee

david said...

amazing clear
light this morning
leaves doing their leafy things
some trembling
others too small and densely massed
to notice
birds at the feeder
three different sparrow editions
while I wait for Mr. Goldfinch
and his articulate
subtle companion

the occasional maple seed spins down

a big red pickup
probably an F-150
somes to a rolling stop at the sign
and turns left, down the hill

and I am wondering
who is that person who wrote
who brought us along on the visit


tossing salads said...

hey spot - loved the princess. we all need princesses in our lives. i have/had 4 of them. ;) now it seems that ive been given another one in the form of love. but another story.

princess i too see cancer all around me. i work at a cancer hospital. and EVERYONE does have cancer. some have spots evil, destructive one and others have ones that they, in time might hardly remember they ever had it. how lucky for them.

i rage here at my hospital. i see children, teens, middles and elders. but what i also see is the spirit my bro exudes. it gives me pause, hope, introspection. i give service to those dying and healing. it is my joy/pleasure. i hope that those in the wet city treat him with as much respect and honor i give my patients. and in turn, dont know who you are, but am grateful for your presence in his life. i know what it means to him. it is an honor to be with people like my little bro. would also be honored to meet you. will get up there but dont know when.

brother, i am here, sending you my most hopeful, large, strong vibes i can. hope the franky scale goes way up. grunts and postures.

Anonymous said...

David, Amazing clear image--I like this. Mr. J.