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!!!)