Sunday, May 14, 2017

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, FreudI 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!!!)
 

Sunday, March 19, 2017

Click!

With stage 4 ovarian cancer, you get tumors. Little lumps. Lots of them. Too many for surgery, unless your surgeon is a pac-man.

I have low-grade ovarian cancer, kind of rare: it grows slowly. The cancer cells are so very much like my normal cells.  So my immune system cannot recognize them, and chemo isn't really geared up to differentiate them from my normal self (so most chemos don't work).  The sole benefit is that my low-grade ovarian cancer cells grow slowly, almost as slow my other cells.  
But not quite.


just arrived. . .
I have hundreds of mini tumors in my abdomen.  The big ones are starting to hurt. I finally got to address this at the hospital, in for my colon, but they had to hook me up to IV painkillers.  
"So, what's the timer on this?" I asked, as an obviously veteran patient. "10 minutes" the nurse responded.  Essentially, then, I could lie in my bed and every 10 minutes I could click the button and more IV pain meds would flow into me.

Hmmm. . . Just Click OK.  Wow, it works!   Oh, check out the clock on the wall--another 10 minutes has passed CLICK!    Cool!


It was New Years Eve.  
I was a little bored, I admit.  click!  and midnight was approaching   click! click!  
And at this point I had no idea that, unlike most people, narcotics act like amphetamines for me.  click click click!
So I was up all night, clicking the button every 10 minutes, flipping through ideas and walking a lot,  click click,  bringing my IV pole with me to walk great hallway lengths, to keep my colon going.  Click clicking all the while
At midnight I took all the New Years Eve group photos for the nurses on their flurry of phones. Click click!  
Finally crashed about 6am, doctors arrived at 7am. Yup, woke up a little blurry. . .

My medical team (doctor, nurses, interns) arrived having obviously already reviewed my painkiller "click record."  (Gotta love those interns!) 
I didn't know that there would be a Pop Quiz.
"Did you use the available painkillers?" they asked sweetly.   What was that about?  They know I did, they know I clicked my way all through the night and quite happily into dawn!"YES!"  I said. "And it was the first time in months that I spent with absolutely NO pain! It was REALLY NICE!"

My bed is the messy one.  
Then my oncologist stepped in.  She knows I have unused bottles of low-dosage narcotic painkillers from years ago. I explained my extreme fear of narcotic addiction, which is why I haven't used them in the 3 years that I've owned them.  But she wants me to live life with no pain.
Her response to my fear of addiction was, "It doesn't matter."  And advised me to use my oxycodone to continue my pain-free fun.

"It doesn't matter?"

Getting hooked on narcotics "doesn't matter?"   
Bull.  I have kids.  Every single move I make, every mood change, matters.  A LOT.

So for now, I think I'll start with an ibuprofen or a naproxin or a glass of wine and take it from there. I think I can mask pain to a certain point.  Accept the new normal, use narcotics only infrequently.
When I think of all the other pain out there--a deceased spouse, missing front teeth, an unpaid mortgage, a brother lost to drugs, a country and culture sent to the winds with so few members left that the language and history might not survive.  For me, right now, I have a bellyache.

I think I can live through cancer, for now at least, without major narcotics.
But I think I will take viticulture a little more seriously. . . and often!

Thomas Jefferson's 18th century historic vineyard is only 10 minutes from University of Virginia Hospital, and en route to my clinical trial in North Carolina. . .Mmmm!



But deep down I know it's just a question of time before I'm pressured enough to join a click.


 










 

Wednesday, January 11, 2017

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?








Monday, December 26, 2016

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 areWith 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 floorI 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.

   



Friday, October 14, 2016

My Last Fireflies

Our creek, "Little River."  We're on the right, neighbors are on the left.

Our house sits strong and solidly on a hill that terraces down in slow, grassy folds into a creek bed. Across the creek, trees climb the rocky bank up into our friendly neighbors' lot.

From my bedroom window, I see their trees stretching up as they have done since before any of us arrived here. Sycamores, pin oaks, white oaks, pines.
From my pillow, I look out onto summer nights filled with thousands of fireflies blinking in those trees with the randomness of nature that electric Christmas lights hope to, but never quite, capture.

It's October now, and the nights are getting colder. No frosts yet. But I looked out last night from my bed and the fireflies had gone.  When did they go?  While I was in a fever for two weeks?  Or while I carelessly enjoyed good health before, and forgot to appreciate them daily? 
And so the joy of my summer nights has gone for the year.     But I don't have another year.  
So I'll never get to see pretty fireflies again.    Ever in my life.    Never again.

How sad is THAT?

Well actually, once I stopped the wallowing-in-self-pity mode, It was OK. 
My sister Laurie has Thai friends reading this blog, and maybe they've never SEEN a firefly (well actually fireflies might be a national Thailand pest but how would an American ever know?:)
I remember age 9 in England, we used all of our childish resources to try to explain "snow" to our new non-English-speaking Egyptian classmate. We all adored him. But one day he never came back to school. Did he go back to Egypt? Even the school administrators were at a loss. He was transferred to a different school or home or country. And I always wondered. . . after all of that, did he ever really believe in snow?

Fireflies and creeks and trees and snow and countries I've never seen are the loves in life. And once we get into the emotional loves, it's all so much more. And then we go spiritual. Wow.

After half a year of fighting to get my clinical trial drugs (nivolumab and ipilimumab), they didn't work. No regrets. . . it was a GREAT choice. They just didn't work for me (they are curing thousands of other people).  My tumors are growing, my CA-125 (cancer count) is growing.  So I stopped taking the meds.

104.9 F = 40.5 C  Wow!
The side effects after the last treatment kicked my tail.  My super-high fever had me into the hospital for a few days.
But then I was admitted to the lovely University of Virginia Hospital Cancer Ward, with one super-trained nurse and one assistant per 4 sleepy patients.  Nice.

So now I'm off the clinical trial meds, and detoxing. And also getting off the steroids (yucky prednisone that I actually needed to quiet odd things down a little). Ugh.

But every day that I have less chemicals going into me, I become more myself again.

I can see why some people refuse cancer treatments now. The physical and emotional and mental effects are hard-going.  You spend months in sickness and mood fluctuations and spacey lack of comprehension and often without fluid thought.  Personally, I'll keep plugging on with meds, and just deal with the rest.  But I completely understand the merits of the opposite perspective now.


I'm not a pack-rat at all, but my original vinyl record collection is still pristine! My lovely husband gave me my dream present--and I can use it anywhere. . . including in my bedroom once I can only dance in bed! LOVE IT!




I have another treatment option coming up. It's the last bullet in my GYN Oncologist's arsenal.  Hormone therapy.  It worked for a few of my doctor's low-grade ovarian cancer patients. As director of Gyn Onc for UVA, my doctor has hundreds of patients.  "A couple of successes"  means I have a what, 1 in 400 chance of responding?  And that's all she has left to offer.  It's not her fault.  They haven't cured cancer yet.

I got the prescription, but we're wiser now. I'll start when I'm ready, once I feel I've detoxed off the other stuff, once I'm braced for a potentially mood-altering drug.  After all, at this point, a week or two won't make a difference. 

Cool, Huh? Global population 750.
So before I start the next regimen, I'm having my annual GOAT PARTY!!  Endangered heritage breed, national event (well, our numbers are so small we can only really BE national, yeah?), and I'll be OFF any chemo drugs and into my old self!!  Everyone is showing up because they know I'm terminal so it's the last party.  Even my professional Kentucky BBQ guy is showing up to man the grill  (he hasn't had goats in 5 years!)  It will be loads of fun, and I'll be chemo drug-free and back into healthy hyper mode.  

But there is a certain calm I have now that I never had before, a peaceful acceptance that comes from terminal cancer.

Once the sun goes down and the party keeps going until midnight as usual, nobody will pause to wonder if snow is believable to young Egyptians.   
No one but me will notice that there aren't any fireflies in attendance -- no one could imagine that while they're chatting and laughing at a table of wine, I'm mourning the beautiful green-flashing fireflies as a treasure that I'll never see again.

But I think I'm OK with that now.