Wednesday, December 9, 2015

PTSD - Post Traumatic Stress Disorder or Post Tumor Selfie Dysfunctionality?

Yesterday I chatted with a nurse who told me about her son in the military, who had been to Afghanistan, and was now looking forward to coming home for Christmas. He was being de--?
"Debriefed?"
"No, de--. . ."
"De-stressed?"
"No, de-. . .de-. . ."
"Decompressed? "
"Well that's not it, but it's something like that."
Essentially, her son was training to be 'at home' again. Where you don't have to draw your gun if you hear a noise. Where your friends don't suddenly die in conflict. Where death is not an imminent possibility, or probability, of each day.
The USA military is now taking steps to ease Post Traumatic Stress Disorder. Yay!

I heard on the radio a while ago that cancer patients also face post traumatic stress disorder. Sure, the stress is certainly not that which soldiers face.  But we can see how it could be the same emotion.  
For cancer, you go in, sign in, have body parts removed, undergo chemical attacks on your whole body system. Tough stuff, and emotionally-jarring, too. Pretty girls have their breasts removed. Cool guys have their prostate under the knife. Sorry, that leg has to go. And would you like to sign up for an additional chemical trial?

Some cancer patients and caregivers take a pragmatic approach to cancer.  
"Right-ho! Cancer! Gotta have surgery, and chemo, so be it. But we might as well use this experience to benefit all!"
And so they face cancer with not too much panic, but with good intentions, helpfulness, humor, prayer, good diet, exercise, whatever.  Looking good.  It's tough.  It's a year of being sick, probably hairless. The family calls daily. Old friends resurface with cards and presents. People on the street see the bald head and offer hugs and prayers. Many cancer patients thrive on all of the goodness that their family and community gives. The impact is 10 times more than the effort, and we TOTALLY appreciate it and thrive because of the many levels of support!

But THEN the cancer goes away. 
This is where the PTSD comes into play. . .
The Tumor is gone. The hair is back. The patient has readjusted her wardrobe/gait/sex life to accommodate the life-altering body changes that came with surgery. 
No-one on the street sees this new (yet quietly weakened) self as a cancer patient. They think she's just a little slow-moving.
Friends are pleased that you're better, family has ceased to book plane tickets to visit now that you're not about to die.  The cards stop coming. Cancer's over.  
Bye! Have a nice life! 

Surviving cancer has a secret downside that nobody talks about. It's like going to the hospital to have a baby and you come back home without the baby, and you feel empty and crushed because you had totally restructured your life for no result. And even your family will not send congratulatory cards if there is no actual baby. You're done.
And so now you're expected to turn your life around in a complete revamp AGAIN to make it full of life when all you can think about is. . .

The good part is good. Soldiers come home
But the bad part is that cancer patients can't just wake up one day and say "Oh, OK Everything is fine now so let's forget all about what happened." 
We're still in the throes of this. . . we still need the support that we had when our needs were more obvious. Our entrails that were hacked out still leave scary shadows.
But when we go into remission, most of us can kiss our support group goodbye. 

My friend just got through hubby-with-cancer. Her hubby survived quickly, but has decided to not ever mention cancer again, while my friend, as we figured out, is in PTSD.  
"That's why I called," I said. "Once it's all done, that's when you REALLY need support!"   
We talked about it. Does nobody realize that there are repercussions to the trauma of cancer?

"So how are you getting through this?" she asked.
"It's easy for me," I said, "because I'm back into chemo."  

Love sending selfies to my supportive friends. . . is that dysfunctional?
 



And for a little more fun, follow this link to an ABBA song on You Tube. . .you know you want to.

https://www.youtube.com/watch?v=S68Sc_SoelY&spfreload=10

Sunday, November 22, 2015

Turkey and Grave-y

Picking out your own grave site when you have incurable cancer isn't expected or necessary, but I highly recommend it.
One spring or summer we drove to North Carolina, and a beautiful mountainside swept into view a cemetery that graced a breathtaking foothill. And I decided that that was where I wanted to be buried. But when I had to look at death as a more immediate event, a grave site closer to family and friends seemed kinder to all. Still, I kept a romantic notion of how a cemetery should closely fit a personal perception of beauty. 
I am trying to 'get all my ducks in a row,' so to speak, to make my death as easy as possible on my family and friends. It'll be hard enough for them without their having to tend to details of organization. Or am I just enjoying my last fun times of managing a project?    ( cough "Control Freak" cough cough )
Whose "personal perception of beauty" is best for a grave site? Mine or my survivors'? And does it really matter? I mean, REALLY?

Surprisingly, it didn't take long to find a closer spot to be interred. My neighbor-friend Susie took me out to her husband's recent grave. They have a husband-and-wife tombstone that carries both of their names, but Susie's date of death isn't carved into the stone yet. "We could always be neighbors!"  She made the morning lovely and fun. A wise woman with me at the graves.

I liked that place.  I LOVE my town, and this local graveyard is very much like my town. In microcosm. Except for all the dead people. (in the cemetery, that is, the people in the town are lively enough).  
In the graveyard, the names of my neighboring families surrounded me. This graveyard reflect my town's resistance to architectural committees or to tacky commercialism, or to any obligations of uniformity (Yay! Individualism Reigns!). And planting (even trees in certain spots) is allowed.
The surrounding Bull Run mountains aren't large, they would only qualify as hills to people from Rocky Mountain regions. But they catch the morning sun and radiate powerful calm as all mountains should.  I love them.  
 

"But. . . it's Episcopalian," I whined to my priest. No problem. He'd consecrate the ground as Catholic while they buried me. Do religious schisms delve within and last beyond the grave? 

I dragged my husband to the cemetery. He had been there with Susie last year to see her husband's new grave when I was too sick to join them. My hubby had, in his mind, already chosen this graveyard as a possibility for me before I showed it to him. I had no idea he had thought so far toward the technical details of my death. He had never brought my burial. Would anyone? Maybe best left to a wise, widowed friend. . . 

Then I had lunch with a few of my farm-girlfriends. "I just bought 5 plots."   "How much is your plot? Yes, that's a reasonable price."  "Oh I know where that is, It's pretty. But sometimes the road along there is a make-out spot." 
All of a sudden I saw that this whole grave-choosing process is actually as easy as making perfect cheese, but as such, it's only simple for some. 



This week, Thursday is Thanksgiving Day--a HUGE family-and-turkey-dinner-with-mashed-potatoes-and-gravy holiday in the USA (bigger than Christmas). My mom is here from really far away, not for the holiday, nor for her imminent birthday, but for me. She's here to help.

I had my mom follow me in her car (with her hubby), without either of them knowing their destination. We pulled up into the cemetery, and she parked after me. 
"We've been looking into a little real estate lately" I told her. 
She knows me, she feels me, she already knew.
She liked the place. But she also liked my 1970's teenage make-up and outfits as we did "ask-mom" checks before parties.    
What is the result of giving the answer you're asked for?    
Another wise woman beside me at the graveyard. We looked around, I showed her a few possible spots. . .

I sunk inside wondering how this unscheduled stop must hurt my mom, but I hoped it brought her a little peace, too. She smiled, I smiled, too. Not goofy smiles due to a lack of ability to acknowledge or express our thoughts, but quiet, strong smiles in patient acknowledgement of the tides of life.
 

I'm trying to ease the stress of my death, by planning for it, by doing a little of the footwork for it, which is comfortable for me but a little trickier for others. But there's a part of me that wonders if there is a small hovering thought emanating from my family and friends--or maybe even from myself--is she trying to control things from the grave before she's even dead? She's doing all of this stuff and she's not even technically dying yet.  

Yes, I'm not dead YET. . .




Sunday, November 8, 2015

Hair We Go Again, Bold and Bald



From what I've seen, cancer patients who are told that they might lose their hair during chemo usually don't. But my carboplatin-paclitaxel chemo combo includes a guarantee for total hair loss.

And as this is the second time I'm doing a round of chemo treatments, that means I'm totally bald again!

Losing your hair from chemo only takes a couple of weeks, if that. 
At first I noticed a few hairs in the sink. Then the next day or two had me doing a little more vacuuming and drain-clearing, and my hair lost its luster and bounce. And then IT happens. 
You wake up in the morning and you have hair on your head, but it feels like it's  
Someone Else's Hair.  Eeeew!  Night-Hair on Elm Street!

The first time I lost my hair, I prepared well. I bought my wig on my first day of chemo, and had caps ready, too.  I had my hairdresser's cell phone number at hand, and he kept his buzz-cutter ready for me.  
So when I woke up that dreadful morning knowing that if I even touched my head, half of my (long) hair would fall off onto the floor, I just called up my hairdresser, zipped on over to his shop before it opened, got a buzzcut, and put on the new Raquel Welch wig all before 9 am. Ta-Da!  Lovely!

The second time I lost my hair was a little different. Again, I woke up with creepy mass of nightmare fur on my head. I called my hairdresser, who said he couldn't squeeze me in until 2pm. "But I can't wait!  I need it off NOW!" I pleaded. No go. 
I do have a good hairdresser, he just didn't really "get it." Not everyone does.

So I went to my local town's Grooming Room (not to be confused with the town's Grooming Salon which caters to Jack Russell Terriers and such). I had never been there before (to the Grooming Room, that is, our Bichon visited the Salon once). 
At 8:45 a.m. I pushed open the door and breathlessly streamed out, "I-have-ovarian-cancer-and-only-2-years-to-live-and-I-need-my-hair-buzzed-off-RIGHT-NOW-can-you-do-it?"
And much to my surprise, Dwight (the hairdresser) acted like this happened to him every morning. He kindly invited me in.

Before I sat down (the shop was empty, so early), he offered me the option of a more secluded chair.  "No thanks, I like to see out the window."  The buzzing noise started. The hair fell in clumps to the floor, and I moaned softly "Oh this feels SO GOOD!" I felt so much cleaner without that creepy dead stuff clinging to my scalp.  Aaaah.

Dwight explained that he had done this before, but for some women it is a really saddening experience, and had offered the secluded chair in case I might have needed to cry. 
I felt pretty self-centered to not have realized this. I always had seen chemo-baldness as a possibly unflattering state, especially now that I'm over 50 and hair helps give femininity where my face has butched-up a little. But I never really internalized that women were crying about it. My heart goes out to them.

Did I bring my wig this time?  NO WAY!  

Last year I wore my wig and it looked great. But summer came, and it was hot and itchy. And yet my children insisted I wear it. So I couldn't go to the pool or anywhere with the kids for fear of serious heat-stress. I felt more and more like I was wearing the wig for anyone but me.  

When I attended a "Look Good, Feel Better" class (makeovers for women with cancer, fabulous class) there was one attendee who said that she was going to skip the wig, as it was only for 6 months and she wasn't interested in wearing one. I saw her point--she was just naturally glamorous with a bald head. The rest of the women attendees pushed her a little. "Try on THIS one. Or THIS one!"  
She couldn't get it through to them. She didn't WANT a wig.
A couple of months after my first chemo, I didn't want or need a wig either, it was everyone else who seemed to need me to wear it. But my selfish side took over (or maybe my shellfish side?) and I turned to wearing solely caps. (Which quickly became worn soul-y caps).


Pink caps are great. If you have a bald head and a pink cap in my area, every woman you pass makes encouraging remarks and offers smiles and hugs and prayers and help. It's the best feeling in the world. Instant support network even if you just swing by the post office. 

coffee with porky
Coffee with a friend.
During this second string of chemo treatments I see things a little differently. I left my wig in the closet, and my kids have had to graduate to mom wearing caps. No fake hair, even if she attends a school event.   
"It's OK, Honey, I'll wear a pink cap and everyone will just assume I have breast cancer."

Without the kids, I don't bother with caps unless I'm cold. Fewer people respond to a bald head under a cap that is NOT pink. It is tempting to wear a pink cap to get lots of positive attention all day long, but I'm beginning to think that this would be a little dishonest.


Last week I had one of those beautiful unforgettable moments in life that take your breath away. I was driving home with the windows down when a bald eagle flew 15 ft from my passenger window, keeping perfect pace with the car for a half mile as we watched each other. 
Flying through life, bold and bald.


"Cover my defenseless head
With the shadow of Thy wing"
         --Charles Wesley, 1740  

Link to You Tube "Jesus Lover of My Soul" Moore by Four//Smallwood/Wesley/J.S. Bach
https://www.youtube.com/watch?v=SSWTxVXxzTU

Monday, October 26, 2015

My Expiration Date

A year ago, my optimistic sister told me that my prognosis was hopeful. "I looked it up," she said. "The survival rates for Stage Three Ovarian Cancer are actually quite good!"
"But I have stage FOUR cancer."
"Oh.  Oh dear.  (oops)."   
(I just love that girl she is so funny!)

I actually have a more rare (and deadly) type of ovarian cancer than most teal-ribboned readers--mine is "low-grade."  The cancer cells look and act a LOT like my regular cells. They divide slowly, which is good, but they also react less to chemo--chemo attacks fast-growing cells. But then again I have a lightening-speed new lump that just appeared, so once again I am sliding off the bell curve (story of my life).

With low-grade ovarian, odds are that I'll live for 40 months. That's overall. So I would backtrack to the date of surgery, March 2014. Which brings my expiration date to July 2017.
Unless-
(a) a miracle happens (I have my top team working on this), or 
(b) I get hit by a texting-while-driving person, or 
(c) I once again leap off the bell curve and defy cancer statistics (life in the 5th deviation is invariably interesting).
(d) I did the math wrong (most likely scenario).

An expiration date!    I can stride confidently into any supermarket and embrace cans of baked beans that share my unique place in the universe! 

But mostly I can plan ahead a little. Life appears different when death is within view. My maternal line live until they're 99. By that age, they truly understand that they will die soon. And accept death with clarity and grace while helping to prepare their survivors for it.
These days I can look at wrinkly old ladies and terminal cancer patients without wonderment, just a deeper understanding of why they're so calm.   (Except for the super-crabby old ladies who continually disprove the common "attitude is everything" theory of longevity).

I don't like the idea of putting my family and friends into a position of grief, but there's not much I can do about it. I can try to reduce the damage by planning ahead, and am blessed to have the opportunity to work within a predictable and manageable time period.  
(Ooh!  Time management skills!  I get to use my MBA! I get to use my MBA!)

My mom is 80. She probably won't live past 100. I never argue with her about that perspective. Nor did any of us argue with Granny when she was prepared for death by age 98--we respected Granny for recognizing her expiration date and working so well with it.

I like the idea of facing death with clarity and grace and understanding. 

Just because I'm dying inconveniently soon, it doesn't mean that I have to avoid it or regret it or deny it.  
In fact, I think I might as well even have some FUN with it.  Somebody has to!  No point walking around like a bunch of stiffs!

I am NOT a cancer survivor.  I can work with whatever life shows me.  And I'm Not Dead Yet.

Wednesday, October 21, 2015

Barbie No More


They say that ovarian cancer causes your tummy to protrude a little. 
On hearing this, many 50-year-old women will accept it as fact, ambiguously nodding while thinking, "and here I thought it was the Haagen Daz."  But their confusion continues wordlessly as they then remember how they've actually been trying to drop the same tummy-padding since 1992.  Maybe I won't mention that. . .
Perhaps this is why they call it a Silent Cancer. 

In February 2014 the biopsy of one of the new little lumps on my ribcage tested positive for ovarian cancer. "If you weren't so thin," said my NP, "you might not have noticed them."
I was 49, 6-foot-1, and fit nicely into my Gap long-and-lean, extra-tall jeans. Long brown hair with a sprinkling of grey, which I figured I had earned (from kids).

I was never super-pretty, but was often attractive enough.  

  "Attractive" sits a little differently after a colostomy. I had to work around any pieces of clothing that did not involve firm waists. No more jeans for the rest of my life. So I went shopping and developed a whole new style for myself.
I chose leggings. Long swing tops. Flip-top (stretchy-waist) skirts. Dresses that start swinging from the collar down. Big Earrings to combat chemo-hair. I brought in new colors, added all kinds of accessories, and had some fun.  And my wig. . . was just the same as my pre-cancer hair, but as if I had highlights and had actually blow-dried it the way I was supposed to.

Every visit to the cancer center was a flashy new fun outfit, and "Chemo Barbie" was born. 
My oncology team heard that new name for me, and loved it and ran with it.

Most cancer does NOT include weight loss these days. . . the days of continual vomit are over, anti-nausea drugs are in. 
My own progressive weight loss was due to multiple factors: a couple of days with no food after surgery,  a hospital whose food staff did not understand kosher/halal so their food was inedible, my blocked ileum, my family not really feeding me much because I was asleep in bed. .  ."Oh, sorry, we thought you were asleep so we didn't save any for you."   Hrrumph.

My sister kindly offered to be a fat donor, which I thought was extremely sweet. Instead, my IV nutrition included a little IV drip bag of white fat (which WAS kosher).

I had sunk into "starving weight."  I lost 30 lbs early on but worked hard to gain it back. REALLY hard. Protein powder at breakfast, 3 am high-carb foods, etc.  It worked. I got the weight back on.  And on.  And on.

"Oh, hold on, you're scheduled for your next chemo today but we need to Rework the Dosage because you've Gained Weight."
And in the blink of an eye, for the very first time in my entire life, I had become 'fat.'  My laugh was easier and deeper. I felt fewer chills. Not such a bad thing.  Have I become a jolly elf, perhaps?
The fat took on a life of its own, and I kept growing. . .
My doctor started recommending low-fat options. My clothes started to get tight. And still I grew. 

The 'Chemo Barbie' name was no longer mentioned. I had lost my "cutey, style-y" effect. The oncology team became more talkative about diet. 
I developed lumps under my arms. Lymph? Hubby and I panicked. A couple of CAT scans. "Nothing to worry about," they said. They're NOT cancer lumps. Possibly FAT lumps.

I used to be 'Chemo Barbie' but I have now become CHEMO BLOBBY.

My new chemo regimen started up again last Tuesday. I wore my wine-colored leggings with a super-long, black silky tank top, a wine-colored pashmina scarf, black sheep-hide ankle boots (David Tate from Zappos), and a black wool-felt hat. And accessorized with jewelery and purse to match.

Before the IV chemo started, my doctor took a look at the new, huge, peach-sized lump on my side. "Fat lump?" I asked.   She said no, it was probably a cancer lump. 
Thank goodness!

My mama she told me don't worry about your size,
She says boys like a little more Booty to hold at night,
You know I won't be no stick-figure, silicone Barbie doll  
So if that's what you're into then go ahead and move along. .  
         --Meghan Trainor's "All About That Bass"
(Click this text to open YouTube video of this song in separate window)

By popular demand, here's a photo of "The Blob that Ate the CT Scanner" taken winter 2014.




Tuesday, October 6, 2015

Mantra Graffiti On My Bathroom Door


Not everyone who has surgery for ovarian cancer has to have their colon removed, but I did. ("Hold on a minute, I was using that!").

With this event, there was only one recourse for my family, and that was to assign one of our bathrooms to my exclusive use. The tiny one. Where a super-sonic power fan was promptly installed.

I have decided to see this "separate but equal" arrangement not as an ousting, but as an honor. Of course it takes a lot of mental determination to keep that perspective, but I figure that if I'm stuck with my own Cancer Bathroom, I might as well have a little fun decorating!

As teal is the adopted color for ovarian cancer, I added a teal towel and mat and some ribbon. I hung a neat little mirror framed with birds that you could only see yourself in if you were 6 ft.1 (That's only ME in this household). 
And then came the graffiti on the inside of the door frame. I painted my mantra in a simple font and drew words tinted in teal from the ground up over the door and down the other side.  

The beauty of the mantra graffiti is that if you only glance at it, and catch a random 5 words or 10, you get a different focus every time, and it can be applied to anyone in our thoughts. 
Here it is:

"wow you look fabulous that hair is beautiful you always have a wonderful attitude and a gorgeous smile lovely things happen to you and good people around you love living with your fantastic strength and happiness we all adore feeling the healing calm and peacefulness so amazing you lovely person you are loved and kindness comes with you"

The "hair" part gives a little extra smile. . . in one week I resume chemo, and my hair will disappear for the second time. My Mom insists that at birth I had a beautifully-shaped head, and I still do. She was right!

Sunday, October 4, 2015

I Just Found Out I'm Not Dead Yet.

I have stage 4 low-grade ovarian cancer, and after surgery and 6 rounds of chemo, it's back. Statistically, I have only 2 years left to live. But I'm Not Dead Yet. And nor are you.
So why not have a little fun while we're waiting?

For those of you who don't have an expiration date, imagine that you KNOW that you'll be run over by a really big truck in the winter of 2017.  Like, you have a 99% chance of not making it until 2018.   What would you do differently with your spouse or kids or friends?  

One of the Great Questions is. . . 
Should you buy those sandals that only go with a couple of spring outfits if your chances of wearing them long-term are a little limited? 
Or should you listen to those "quality of life" urges that beckon you to slip your feet into those pretty heels so at least last trips to restaurants and doctor visits are spent without having to wear THE odoriferous tennies that you also use to muck out the barn?

Someone said to me recently that they thought I didn't take my cancer seriously. I take it DEAD seriously. And I have the deepest respect for all cancer people and caregivers and friends and families. I feel for everything they're going through, and their grief.

Which is why I think I can be a little inspirational in my blog. . .  I'm not dead yet. Nor are you. And when we're dead, other people won't be. So let's enjoy that. For now. 
("Ummh. . . you mean we should enjoy the fact that other people aren't dead or that we will be dead with other people enjoying it later?")     
and hopefully people will get my jokes sometimes.

Welcome to my first blog.  
About 730 days to go (or stay, depending on how you look at it).

Link to "Killing Me Softly" song on You Tube