The "Phallus of Feeling"

I don't know whether or not my immunotherapy clinical trial drug is working or not. 

There are other drugs which I believe might actually reverse my tumor growth, but my clinical trial prohibits me from taking them, not because there would be a drug interference or interaction, simply because they want all data to come from their OWN drugs.  Understandable science. 

I won't bore you with details, but I believe that I'm dealing with "blocked-by-cock" science, where the premise is singular and self-centered.  The alternative would be a "girly" approach where the assumption is that life rules, and that if you investigate a little more deeply it's not too hard to figure out how to realize a plethora of positive possibilities, and to navigate science around them in an inclusive manner.

When I drive 5 hours to North Carolina for my clinical-trial cancer treatments, they present me, every time, with a drawing of a "Phallus of Feeling." 
Of course, they don't actually call it that.  

At first, without my reading glasses on, I thought that the depiction on my form was supposed to represent a thermometer. At the bottom, there is a big blob. From this repositorial blob of goodness-knows-what emerges a thick, straight, upward-rising shape that comes to a curved-yet-blunt end. It includes little numbers beside it.  1 is near the bottom. 10 means "top."  And you're expected to rate yourself, and indicate your personal level on this thing, from one to ten.
And this is supposed to elicit sexually-neutral responses?

Really, though, I accepted the thermometer as an ill-designed sketch to indicate pain levels. Although the rest of the questionnaire assumed that the reader could decipher and indicate their distress over more-than-one-syllable words such as "urination changes", and "household finances," PAIN seemed to get the 'show-me' diagram.  It appeared that without a visual we couldn't otherwise answer the question. 

Stage 4 cancer gets pretty dramatic. Pain, Psyche, Physical.   Probably in equal parts.

So one time I showed up for a clinical trial treatment, (clinical trial is NOT given at regular hospital of choice).   In extreme pain.   I took the graphic offered in hand, and indicated a a "9" (out of 10). Far away from the bulbous lower end of the thermometer, I scratched and circled near the tip. The nurse looked at it and asked me if I had suicidal thoughts (Oh goodness, effervescently-happy ME? No way!!)
But she didn't even offer a Tylenol with my 9-level pain going on. I thought that it was all weird.  But my North Carolina experiences have been so overwhelmingly weird, so I let it go.

It turns out that the drawing wasn't a thermometer to show my pain level at all! 
Instead, I learned that it was a graphic place for me to disclose my LEVEL OF DISTRESS. 
Aawk!   
Think about it. . When would emotional activity most likely effect an increased temperature?   
And who would rate distress using a graphic that represents a bulb base with rising fluid levels that would peak at or indicate body-heat death or male orgasm?  Like, it's a CHOICE?

I mean, Really.  Talk about a totally tactless form.  To be filled out by near-death cancer patients, with innumerable breast cancer women and ovarian cancer women and cervical cancer women facing all kinds of sexual challenges. And women with bladder cancer? Or stomach or intestinal cancers calling for urostomy bags and colostomy bags?
Like we need to dumb-down enough to circle our "place" on an upwardly-mobile post? And we're cowed away from calling it a "STUMP?"

Thanks, Freud.  I know you're a bit passe now but you do Live On and in some ways you totally pegged it.

When it comes down to my NC hospital "Level of Distress" I can't really answer anything but zero. That would be near the lower, bulbous end?   One accompanying doctor-visit friend suggested "but your kids?" and another suggested "but your pain?" and another found some other reason why I should bump it up to at least ONE on the distress level.  

But I'm not distressed at all.  (sorry, friends!)

Distress?  What IS that, anyway?  "Ow! I Hurt, sometimes A LOT!"  is certainly something that I feel, but it's not worrisome or distressful, it just IS. The new normal. No reason to put a flag out.

I guess Distress could mean. . . Fear?

Fear of what? Of feeling worse? Well, I probably WILL feel worse, but I'm pretty glad I don't feel worse right now. I'm ALWAYS feeling better than I will be feeling later, yeah?  It only took one night on the Cancer Ward to really show me how good I've got it!

Fear of. . .my family having a hard time?  All I can do is set them up to succeed through all of this, and to put all buffers in place. So far it seems to be going quite well.  We're a pragmatic group, nobody is doing a teary panic  (except hubby, but I'm working on that). But with counselors at the ready and some already going forward, and Mommy giving all she's got, and weaving her safety net with fantastic friends and family. . . . I think we're good to go.

Fear of. . . dying 'younger-than-planned'? My life expectancy before cancer was 2063. Now it's July 2017.  We all know the beauty of life is not based on time:--

If you knew that a young mother would die in childbirth, and that her child would only live for 10 days, would you encourage her to give birth? 
If you consider a life of an extended 40 years to be worth more than a life of only 10 days, you might have a hard time with what cancer brings. Are our lives to be devalued by their shortness?  Does longevity make a person "better"?   And if we die when we're 50, or 30, or 12, or 1, or 2 months old, or 10 days old, is one worth more than the other? 

If you're OK with honoring a short life, as most of us are, you can deal with the concept that some lives are short, some are long, but all are lovely, and worth keeping.

So how else do I feel?


I feel loved and honored and safe and cared-for. 
I feel forgiven, I feel grateful.
I feel my outside goals are met.
I feel inspired and helpful.
I feel so much love. 
And I feel that I probably could have felt these basics after 20,40, 60, or 80 years of life.
And I really like what guys have to give but I think it's inappropriate to assume such things in the basic parameters of medical care!

And so, this week, I will again face the Phallus of Feeling and again I will mark Distress=Zero.
Life goes on.   (Yay!!!)
 

I Forgot I Had Cancer

My mirror last week

OK sure, you could go into remission and forget you ever had cancer. . . but I still have growing tumors all through my abdomen, and I'm terminal, so for me it's never going to be a thing of the past until I fall off my perch.  

Is there any way that I could forget about cancer, too, like you Remission People?
YES!  And yes, I really did forget about cancer! And still often do!

I've been dealing with cancer for so long that I finally came so entirely full circle that I forgot what the root cause of all the commotion was about.

Diagnosed in 2014, it was clear that I was terminal by 2015 (or sooner) 
July 2017 is my "drop dead" date.   
But now it's September 2016.  10 months left to live.  

So. . . OK, am I getting horribly sick yet?  Actually, no, not really.  I should perhaps be languishing right now, personifying a flapper girl flung in anachronistic despair on Edwardian furniture as an Edward Gorey sketch -- but I actually don't feel very sick. At all.

Me and Picasso at NSLM

To be honest, I have two tumors that I can feel, and starting a week ago they feel like oww-y bruises. Lately they often hurt enough to where I have to take an over-the-counter Tylenol or Motrin or whatever.  
But I'm certainly Not Dead Yet. 
Until a week or so ago (when the owwies began), I had started to forget that I even had cancer.

I'm on a clinical trial, and I don't get to take the trial medications unless my bloodwork comes back as "good."  Chemo works the same way. . . if your body can't handle it, they hold off further treatment until you're recovered enough for the next round.

My latest treatment delay lasted for well over a month.  That's a month without hospitals or scans or "infusions."  Sure, I popped onto my local (rural) lab for impromptu no-wait blood tests, but that was 5 minutes per week with my local (love them!) lab girls. 

Some of these foreign projects need more help than I can give!

But this whole "ooh! scarey cancer. . . eek. . .terminal. . .oh no. . .here it comes. . .ugh!"

Well, it's just not really there for me, you know what I mean?  I haven't sat and looked for what to expect from my dying days from google, it is on my list of projects but compared with "saving an endangered breed" or "writing to my 80-year-old mom and dad" or "supporting colostomy newbies", on top of the very obvious family and friends, looking into my personal death throes is not particularly motivating.

Sleepy sometimes

I'm working to put my hubby and kids in the best positions they can be in to weather my death.  
I'm tidying the attic, getting my businesses in order. . .  (My jobs don't pay, but Still. . .) but my files are all pretty good already. (already all-Ready? Ready for. . .)

But all of these thoughts and preparations -- remain a little strange for me. . .

I AM dying from cancer, but apart from needing an afternoon nap and maybe recently needing one ibuprofin a day, I'm still driving everyone crazy because they they think I'm a little too "bouncy."  
It's not ADHD, I'm focused.    
It's like "manic depressive" without the depressive part.  
These days I have naps and Nap Hard.  But when I'm not asleep, I am definitely awake.


Now that my hair is back (not really 'back,' it's short and grey and curly now; my old hair was long and brown and straight -- miss it! -- sigh. . .),  I am no longer recognizable as a cancer patient.  So my impromptu stranger-in-the-street support network has vanished, and this change also helped wipe out my daily identity as a cancer patient.
I have become well enough to resume farm chores, and driving duties, and laundry, and cooking, and cleaning and almost all the rest. 

My family came to help when I first had surgery, and they saved my life.
Now they come to visit and help, but I suspect that maybe now that I'm over surgery and not on the heavy chemos, I exhaust them.  
"Larger than life" said one sister of mine, finding a sweet way to verbalize my overabundant energy.
"Too much" says another sister, knowing that her comment couldn't hurt me, ever, based on our long love and closeness as sisters.   But she had a point.

Swim with piranhas only when needed

My latest Clinical Trial, at this time, does not seem to be working. I still think I chose the best one, and time will tell. . . but I'm losing confidence in this cure.
My North Carolina doctor for the first time this week seemed to be working to help keep me in the clinical trial.  A refreshing perspective, after the most recent visit, where she mentioned "other treatments" if this trial didn't work.  "Other treatments? I'd like to see those!" I laughed, knowing that there were no more treatments that she could offer.
The doctor laughed too, along with me. (are you laughing with me or at me?)
End of topic.  
And, also, end of my already-challenged confidence in this doctor.
My brain is already starting to put North Carolina into a surrealism category. It's a helpful step.

My doctor at the University of Virginia would not have laughed, she would have discussed any possible alternative treatments with me immediately. In fact, she already did, months ago. And even if there were no more treatments available, laughing would NEVER have been an appropriate response for her, no matter whether I laughed, as is my personal approach to it all, or not.  
My UVA doctor does laugh and smile a lot, with me, at appropriate times and subjects.  
The "hahaha there's no cure but I can laugh with you on that one"  is completely left to North Carolina medicine. UVA abandoned that approach many years ago (Perhaps with Jefferson? Or when Poe was a student?). 

How could you just drive by?

 I never knew about chasing waterfalls until I took this photo on my way back home from UVA, and I four-wheeled up the back roads to find its source.  I was alone. My family would never have agreed to the waterfall hunt, and only half of my friends would. . .


I'm not in remission, my tumors are growing, but for now it feels as if my cancer is gone. 
Or rather, it feels like it's something I don't really have to deal with for now. A stock-still stream if you ignore the rapids. But some of us, for some reason, need to feel ALL of it.

Oh no, is this like that scene in Verdi's La Traviata where she sings "Spasmodia Arrette!" , wrongly believing in the disease-signature last burst of energy before she keels over from consumption?   Awk!

(Note to Self: Buy a cool white flowy nightie as seen in Zeffirelli movie version of L.T. to ensure beauty during swan song, versus dying in present scruffy nightwear).

Rachel Patten Stand By You:
https://www.youtube.com/watch?v=R4KkBxv0VpY