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!!!)
 

Are Donkeys More Fun Than Cancer Patients?

Donkeys approach this pragmatically

I really don't have a lot of cancer research time. . . Sure, I could spend more hours per week getting really educated on latest developments and jamming off to cancer yoga classes etc.   But really. . . . Once us cancer patients get to the point to where there's not much time left. . . we get a bit quiet, we don't want to go to yoga or to whatever else is offered. We need to focus on the REAL stuff. We get a little introspective.

Terminal cancer people are in many ways like really old people, because they are facing death and can think about death seriously. "No, you're going to live forever!" is a nice family response and an appreciated sentiment. And we'll smile and hope for what you hope for, because you're so sweet. I have been on both sides now. . . I think both approaches, healthy and dying, need to listen above all else, and leave the contrary or expected sentiments silent. Real words and feelings that seek a voice despite stumbles are beautiful.

"Play Dead, Pickles!"

While our family are planning holidays, cancer folks are planning The Next Dimension, which is a far further stretch than "oh will we make the 9:40 train?"  

Give Us a Kiss, Honey!

My first glimpse of addressing our elderly was in England, where old age and confusion and care are just a normal part of family life, and everyone settles in at home.  Perhaps uncomfortably, but they all settle in anyway. "Gran" is here to stay. She might cuss from a chair in a corner while calling everyone by the wrong name but she's home.

When I was 8, we moved from Canada to England where the local primary school was the source of all of my friendships.  Most of my classmates had grandparents living with them.  Veterans from WWII. From my age, that meant odd grandpas (we were all warned in advance), and evening meals at my friends' houses of jam and bread. With Grandpa acting strangely.

In the USA, you never know.  In some families, caring for aging members is par for the course, but in other families, dealing with old age care is confusing to the younger set, so both parents and children are facing unsure outcomes, because they have no idea how the heck they are supposed to handle the many stresses involved. 

Cancer affects us all pretty severely.  The person you love, or the budding new mother, or the fun-loving child, is suddenly the sick, dependent person you didn't expect to have to care for this year. 

Would it be a social faux pas to say. . . Donkeys are Far more Fun?

Is she REALLY a terminal cancer patient?

I must admit that it's a bit odd to be writing a blog about a terminal cancer patient, myself, who is still Not Dead Yet.  What part of 'Terminal' don't I understand?

Are y'all getting tired yet?  I'm not. 
I'm still really jumpy and bouncy. 
(Or maybe I'm just nailed to my perch?)

Actually, I DO still crash from my latest treatments, and spend days in bed. But not often. And if or when I spend a day in bed I can still jump out to do 5 loads of laundry and general cleaning and grocery shopping and at least cook a dinner dish to put in the fridge for the family to reheat at sundown.  Phew!

Prayers come generously. The results, to me, are showing quite nicely.

Mentally and Spiritually, I am where I need to be now, and growing and changing positively at a pretty good clip. For those of you who are not religious, you can surely understand the spiritual love vibe. . .
I have close to a thousand people pushing their love my way in contemplative prayer.  It's completely humbling. And very effective.

People who have to deal with others who have terminal cancer get fatigued and understandably are more than ready for some sort of emotional closure.  

If I were from a BAD family, the question would be, "Is She Dead Yet?"

But if you're from my contrary gene pool (Go Canada!) or are friends or advocates, the rallying cry is "No, She is Not Dead Ever! Lab results are misleading! Doctors don't know squat!"  

OK, that might be a little presumptuous, we need to all settle back down to the pragmatic view of "Not Dead Yet." 

Options for true closure on this whole cancer thing are my Remission or my Death. 

Remission is highly unlikely. But Death is sure taking its own sweet time. 

In short, it's a waiting game. And putting y'all in "The Waiting Room" is nothing I would ever wish on anyone, but there you are.  With me.  And I TOTALLY appreciate the company.

Delays on approaching death, and remission that never comes?  Socially, you can't talk about death dates. Tacky as hell. "So, aren't you dead yet?"  "So, when will you actually die?"  I'm trying to address that here on the blog, where everyone can read it and nobody has to face the taboo of saying it out loud.   July 2017. 

But I'm Not Dead Yet.

And with the latest treatments? Jury is still out. July 2017 death date stands until further notice.

But what's the best way to address people who openly acknowledge that they're actually dying? Go for it. Ask us. Us dying people get one chance to be the wise old people. Cancer center waiting rooms are full of dying people, and people who might live through it. A delicate conversational balance is reached with patients in the waiting room. "Does it hurt?"

My Hope Squadron, which consists of most everyone I know and thousands that I DON'T know, pushes all prayers and good thoughts toward my survival. 

Only a few this time!

My husband worries a little that people don't really understand my cancer because I seem so "up". And healthy. 

In 2014 I had a really fun uplifting friend on the UVA hospital cancer floor.  I was a newbie to cancer so he was gentle in his choice of subjects and stories. He was British, so his energy and humor was a refreshing reminder of what I loved from years in England.  Once I really delved, I found out he had two weeks to live. And then I returned home to my family.  And am still here. Not Dead Yet.

   

Beyond the Pink: UnderWire for the Bra-less

I have Ovarian cancer, but I think I need to address Pink Girlfriends before I can get further, and so that I can get further..

Breast cancer women seem to have pretty good odds compared with us Ovarian girls. With meeting so many breast cancer "survivors," I began to believe that death from breast cancer was an uncommon event. Until finally I began to meet people who were approaching imminent death from breast cancer.

There is a little blind spot where breast cancer women are not survivors, nor are they particularly playing with pink. But they're not dead yet, either.  In a way, each day they're living life under the wire.  They do so much, they live so much, but for the most part they remain unseen. 
We wail death and cheer survivors, but our women who are in the process of dying, but not dead yet, are almost hidden from all of us.

Breast cancer is so greatly publicized that it really sets the bar for all cancers in general. (Meaning a high-jump bar  vs. a Bombay gin-fizz at a medium-height bar. But we could always adjust to suit).
We all get to meet lots of people who have had breast cancer. Pink ribbons everywhere. Lots of perky, happy, breast cancer survivors. In pink. Or with pink accessories. Go Pink!

A pink cap on a bald head is a magnet for breast cancer women and their friends and relatives, who are a fabulous bunch to have rallying around you. 
Imagine stepping out the door and being surrounded by a pack of sorority girls who just voted you as Top Girl.  That's what breast cancer women do to other cancer patients. Total Feelgood. 

They'll even act that way toward me if I have no cap at all and am just walking around as a baldy with no eyebrows (not quite as pathetically as you would think from this description).  Hugs-kisses-cheers-encouragement. Wow. Go More Pink!


In 2014, (the first time I lost my hair from chemo), my kids were too embarrassed to be seen with me unless I wore a wig (caps didn't cover enough). 
Dropping off the kids at school one day, I hid in my car wearing a baseball cap (to further hide my wigless head), before my kids left the parking lot to cross the buses-only driveway to their school. The school driveway is covered in permanently-painted pink ribbons. (Perhaps, I pondered, in a discreet tribute to all the women who unwillingly wear caps and shrink down into cars under social pressure to disguise chemo side-effects).
That day was special--a breast-cancer rally.  My kids wore pink, accordingly, and as they stepped out of the car prepared for the big day they urged, "Mom, don't let them see you." That hurt, but it was OK. Some people just don't get it, even if they're your own kids.

My friend sent me a huge, beautiful cancer-girl basket from IIIB. Fantastic. Very feminine. Totally thoughtful, even to the little stuffed lamb to keep your seatbelt from getting too close to your breast site, the angel candle, the pink neck pillow, a million things. By golly, they even used Pink Chiffon as packing material. Loved it.  (Thank you Natalie!)
Breast cancer continues its upward spiral in sophistication. Women support women so well.

I'm fortunate enough to also meet the breast-cancer women who are NOT the fun-jumpy-pink survivors that many of you see.  I get to meet the tired breast-cancer women who are waiting with me in the cancer center to get scans or blood draws or whatever.
At cancer centers, you meet people who make the rest of us patients look like wimps.  
Sit next to someone who is literally dying in pain, and you'll realize that yes, despite an upbeat approach to whatever uncomfortable treatment you just went through that won't cure your own terminal cancer, you STILL qualify as a wimpy-complainer compared to the person you're chatting with. 

What was a little scary--with all of the pink ribbons and sponsored runs and fundraisers and awareness activities, 

I still had no idea of how a woman could actually, really die from breast cancer.  
Do You?   I mean, really?  Do you?

 

These were my guesses: 
1) Breasts expand from cancer until maybe the woman just ulcerates to death in some way.
2) Cancer gets into the tissue behind breasts and then spreads around like an infection to maybe the lungs and heart.
3) Breast cancer goes into the lymphatic system so strongly that you can no longer fight infection. Then the cancer cells spread from lymph nodes into neighboring tissue and slowly they take over all of your normal body cells, using your lymphatic system as a super-highway.
4) I actually hadn't thought far enough to come up with anything better than those three.

By golly, was I wrong wrong wrong. 

OK, so after years of breast cancer awareness campaigns, what do we really know except for the fact that it exists? How women actually died from breast cancer was all so new to me.  
I asked a few family and friends--they didn't know either.  We really had no idea. 
My beautiful aunt died of breast cancer.  And still, I didn't know much about cancer when I found out (or even once I got cancer myself).  
"Dying of Breast Cancer" is the new "Dying in Childbirth."  We accept it, and don't know how or what to ask, so we never really understand what exactly happened there. It's time to start asking.

How do people work so hard on breast cancer awareness campaigns without most of the populous knowing in what way breast cancer could become fatal?  
Or when the pain starts?  Or, after a woman has mostly healed from a double mastectomy and the cancer comes back, where does it hurt then? Or does it? 

So here it is:

Breast cancer kills you in one of three ways: 
1) by spreading into the bones, 
2) or liver, 
3) or brain.  
Those three. That's it.

I had no idea.    But does it hurt?   

The woman I met the other day has breast cancer cells growing all over her bones, but not inside them. The cells are growing on her skull, too. 
"Does it hurt? Can you feel it?"   
Nope.  
"Does it feel just like a bruise, maybe?"
No, I can't feel it at all. But when the cancer gets inside the bones, that's when you start feeling it, that's when it'll hurt. My breast cancer like to go up. It all wants to go to my head. It's already on my skull but today I'll find out if it's going into my brain or not.

I wonder if women who do not receive regular medical care suddenly show up for mammograms because of Breast Cancer Awareness efforts. Really?
And I wonder if women who do pursue regular health care. . . wouldn't they get a mammogram anyway?

If the general public has no knowledge of how breast cancer women actually die from breast cancer, how are us old quiet hens with Ovarian cancer supposed to feel hope from the "awareness" paradigm?  
Ovarian cancer is "The Silent Cancer."  But maybe the women who are actually dying from breast cancer are somehow silent, too. If you buy a pink coffee are you really learning or just feeling better about getting wired? 
 
Ovarian cancer awareness. . . we could follow the pink ribbon with a teal one, but maybe "awareness" isn't good enough. "Awareness" is actually a pretty vague term, isn't it?  It doesn't really emphasize learning, does it?   
"Oh my son is really aware of math in school."
"My surgeon should be good, he has lots of awareness."
"We went to a cancer awareness dinner and the duck wontons were fabulous." 
"I have a PhD in Awareness" 

Is is just me or is "awareness" very 1980?
I think we can do a little better than "awareness."
Our Ovarian Cancer bar needs to be higher.
Or maybe our seats need to be lower. . .Working on it. . .