Catch me if you can…

“Responsible denial!  I like that!”

My oncologist is a hoot!  i’ve been going to see him every six months for the past four and a half years.  As much as i love him, i’d be quite happy not to see him quite so often… Once i get to the five-year milestone, we will only see each other once a year.

i’d just finished explaining to him that despite his luscious charms, i’m ready to go to that annual visit.  The six month thing is screwing with my ability to live in the realm of “responsible denial”.  That thing that says “yeah, i had it, and i’m going to be a good kid and do what i’m supposed to, but for the rest of the time, i’m not going to think about this too much…”

He was ok with the concept, but reminded me that he’ll have to see me in six more months before we can start to have an annual date.

daisyfae: Gee, you’re kinda OCD. 

Dr. P:  Such tendencies are generally welcomed in my field of practice.

When i first started seeing him, he had gently bemoaned the fact that he’d had to put off a vacation because life got in the way.  i reminded him that a man in his profession ought to know better…

From that point on, our conversations started with “Where have you been lately?”  And between the two of us?  We’ve covered a lot of turf!

Today, i started, with tales from my trip to NYC and Chicago, along with plans for two dive trips before the end of the year.  Grilling me on details, he was fascinated with my plans to chase the whale sharks off the coast of Central America as they meander along their migration route.

We talked of SCUBA training, rescue dives, and various terrifying moments i’ve stumbled upon in my rookie dive adventures… Including a night drift dive in 5 mph currents that nearly resulted in a permanently soiled wetsuit!

We talked about the motorcycle, and my frustration at having it in the shop for over five weeks this summer.  And my slight limp as i moved from the chair to the exam table – injuries received by dancing my lumpy, middle-aged ass off at a local festival all weekend. 

Dr. P shook his head in disbelief…

daisyfae:  Yeah, i know i’m your craziest patient…

Dr. P:  No, just the biggest daredevil! 

daisyfae:  It’s managed risk!  C’mon, i’m not stupid.  This isn’t like walking a tightrope between skyscrapers – i’m careful about risk mitigation!  Always have a net.  Always have “Plan B”.

Dr. P:  You’re still out there on the ledge!

daisyfae:  Reckon so…. i’m pretty sure it won’t be the cancer that kills me…

Dr. P:  It would have to catch you first!

We both laughed, and he went on with his exam…

“Responsible Denial” or not, i’m certainly aware of the fact that cancer doesn’t need GPS and RFID tags to track you down…

cartoon from the brilliant world of xkcd 

“… that doesn’t mean we have to eat it!”

i’ve written about my ‘breast cancer grannies’ before. “The 3B’s”, which stands for “Booze, Brie and Breasts”. Leontine and i drank our way through it, diagnosed within 2 weeks of each other, and meeting through an article written about me in the local paper. We’d meet up every month, drink a bottle of wine, bash some yummy brie, and just yak for a couple of hours.

Who needs therapy?  A support group?  We were doing our bit to keep the good folks at the Banfi Le Rime winery in business!

We added Doris two years later, when she got the bad news at 68 that she had acquired a pesky cancer nugget.  Susan joined us last year – she’d had cancer about 10 years ago, but mostly wanted to hang out with us because she’d heard we were goofs…

i’m the ‘kid’ as they are all in their late 60’s.  This minor fact has made exactly zero difference in the amount of fun we have together – or how much we all can’t wait to meet up.  On a dreary, rainy, chilly day in early March, we all couldn’t WAIT to get to the bar of our regular restaurant tonight.

Our monthly gathering. Susan’s husband just got the prostate cancer diagnosis, which got Leontine’s husband last summer. After our “happy hour”, the two gents were meeting up with their wives for dinner so they could walk through the details together… over a decent meal and better wine.

Our conversations are all over the map – a lot of travel, grandchildren, children, gossip, bullshit and whatnot. With the occasional mention of that thing that brought us together in the first place. Tonight was no different.

Doris had just returned from a trip to Sonoma, California, and was sharing her latest travel headache. Going through security at O’Hare airport, she was directed to the millimeter wave imaging system. With a mastectomy over under her belt two years ago, she knew what was coming when they asked her to step aside for the TSA grope.

She regaled us with the tale of the idiot TSA agent.

Doris:  So this woman is feeling me up, and asks if i have something metal in my bra.  I tell her “I had a mastectomy, and I wear a prosthesis”.  This idiot asks me “Here?”  I wanted to say “No, honey, in my ass!  Where else would it be?”

We laughed like schoolgirls.  Leontine went on to suggest that no one could be that stupid – not even a TSA agent. 

Leontine:  Maybe she thought you’d said colonoscopy….. I mean… colon….. colo… Shit!  What’s the word?

Only halfway through our first bottle of wine, we were all struggling for the word – but somehow found it simultaneously, shouting in chorus “Colostomy!”

One of those moments when the entire establishment had gotten preternaturally quiet a microsecond before.  We paused…

daisyfae:  Perhaps we should shout that a little louder – i think there were a few folks in the dining room who didn’t hear it!

As we snorted and hooted at our goof, it occurred to me that there are women who have been down this road, and consider themselves victims of cancer. 

There weren’t any of those broads at my table tonight…

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This post is dedicated to a lovely man, recently returned to the blogosphere.  His words get stuck inside my head sometimes and rattle around for days, sometimes weeks and months.  He recently told me “In life, at times, we all fall in the shite, but that doesn’t mean we have to eat it.”  Damn straight, brother Jimmy.

Riding the cancer coaster

Two trips to The Park this week.  Two visits with oncologists – medical oncologist on Monday and radiological oncologist on Thursday.  The 240 additional miles put on the odometer of my re-animated shit mobile brought very promising news.

Stage 1 (ie: localized) non-small cell carcinoma.  Just a cancer nugget – about an inch and a half long – in the lower lobe of Mom’s right lung.  This was discovered almost accidentally in November as a result of a chest x-ray ordered to see if she had pneumonia.  Accidental discovery. 

Given that Mom has already told us she would not be having any sort of surgery for this, nor did she want to do chemo*, it is even MORE miraculous that the oncologists agree that this particular cancer is quite treatable.  Only radiation.  Stereotactic radiation, to be specific.  Like a ‘gamma knife’ procedure, only using very localized x-rays, it will only hit the cancer, leaving no burns, no systemic effects, and quite possibly no substantial side effects.

One ‘planning’ visit.  Four treatments of 30 minutes each over the course of 2 weeks.  That’s it.

Scheduling is underway, and the radiation oncologist was rather optimistic that this procedure will ‘control’ the cancer.  As in, it won’t spread.  It won’t grow.  It won’t cause her any further trouble.

Whew.

Some snippets from the past week:

– Flipping through Mom’s medical charts, she is classified as a “98 Pack Year Smoker” – given that she smoked 2-3 packs a day for about 65 years.  At 82 years old?  i almost want to ask that cancer nugget “what took you so long?”

– My niece, DQ, is stepping up to the role of “Number One Son” for this particular journey.  She is earning that house.  But it’s frustrating… The docs will ask Mom a question – “Why did you have the initial chest x-ray? What were your symptoms?”.  Mom will start to respond with a long story about how she was sick with some breathing problems, but it was just because of the inhaler, and that stupid breathing machine she has to use to sleep…. and then DQ will jump in with more details, about how Mom didn’t want to go to the doctor, but we made her…  The two of them, full of nervous energy, will go back and forth, overwhelming the doc as he tries to pull the pixels together into something useful.  And i sit on my hands and shut up…

– Waiting for the radiation oncologist to review the PET Scan results, we were asked to have Mom fill out a ‘general health’ questionnaire.  Questions such as “How many surgeries have you had?”, “List your medications”, and “Do you have diabetes?”.  There is also a section on mental health.  As i read through the questions, i asked Mom “Are you generally happy with your life?” and she immediately said “No”.  Improvising a question, without breaking cadence, i asked her “Have you ever been happy with your life?” and she immediately said “No”.

– There was a section of the health questionnaire that asked about pain.  Three questions:  “Do you have joint pain?”  “Do you have back pain?” and “Do you have neck pain?”  She replied affirmative to the back pain question.  i added “Carrier” on the line next to the neck pain question.  i hope someone reads it one of these days and laughs…

~~~~~~~~~~~~~~~

* When talking with my niece, DQ, and me about possible treatments prior to our first visit to the oncologist, Mom stated quite clearly that she would not consider chemotherapy.  Her reason?  “Eating is the only thing I enjoy, and if I can’t eat, or I can’t taste anything?  Life isn’t worth much.”

How to die

She’s 80 years old, and weighs less than her age.  Pound for pound?  The toughest woman on the face of the planet.

Edna was my admin assistant when i did my reluctant tour as branch manager a few years back.  We joked at the time about her diminutive size, but no one was ever going to deny her a request for documentation, signature or assistance.  Bottom line:  Shit got done.  We were at the top of the admin heap in a large research organization simply because of her knowledge and tenacity.

Her trials and tribulations would have destroyed most mortals.  Pregnant with her second child, her husband was struck by lightning and killed on a golf course during a Father’s Day outing, throwing her into the ranks of “single mother” before the days of affordable child care.  She continued to work, and her children never went without necessities, discipline or love.

Tough as nails, she also demonstrated solid home defense skills. A dumb bastard attempted to take advantage of her situation for his own benefit.  He entered her garage late one night, and attempted to break into the house.  She heard him.  “If you open that door, you’ll regret it”.  He did.  She shot him in the thigh, and watched him bleed while she called the police.

While handling the necessary and potentially crippling administrivia that daunted my organization, she also battled a chronic form of leukemia.  But Edna was no stranger to cancer, having survived breast cancer (double mastectomy) in her 50’s, and colon cancer in her 60’s.  For her?  Another annoyance.

She kept working part time for a few years after i’d moved on to the new job, but finally retired for good two years ago.  At 78 years old.

Last summer, i got word that she’d been hospitalized with pneumonia.  They found metastatic cancer in her lungs.  She decided to try some “gentle” chemo for a bit, but it made her weaker, so she told them to shove it.  Her son and daughter-in-law lived near by, and were providing daily care to help her maintain independence.  It was the hip-breaking fall in the bathtub in October that set the final showdown in motion.

Her daughter-in-law and son moved in to provide round-the-clock care.  Hospice was notified, and home medical care was kicked into play. 

Today?  A pizza party at her house, with a few of us from work.  The people she liked.  Edna never suffered the office fools with much humor, and was quite specific on who she didn’t want to darken her doorstep. 

Worried about the needs of her son and his wife, she insisted that they take next weekend off… and invited a neighbor to come and stay with her so they can return home for a little respite care themselves.  Her neighbor, a gentleman in his early 70’s, was glad to assist.  Edna informed him in no uncertain terms that sex was out of the question… mainly due to the fire hazard from the oxygen!  Sparks would be bad…

Speaking of fire, she’s still smoking.  With an oxygen hook up, i did a quick safety check.  Separate room for the oxygen and the smokes.  As she said “What’s the point of quitting now?”

Weighing in at 61 pounds, the cancer gets more nutrition than she does when she eats… and she’s too stubborn to feed the cancer.  Perhaps a month or two before she’s gone.  The toughest broad i’ve ever met tackled life Edna-style.  And is taking on death the same way…

Mission: Accomplished

Three women.  Of single mind and purpose.  Once the date and location were agreed to – three months ago – it was a battle fought madly to keep life from impinging upon the calendar.

Driving.  Four hours.  The cities and interstate highways melting  away, into an unfamiliar landscape.  A two-lane paved road, weaving through wooded hills.  Signs advertising “Deer Processing”, “John Deere” and “Sunday Beer” punctuating the brown and gray autumn palette.

Housing is a mix of trailers, modern tri-levels and victorian homesteads.  Corn and soybean fields harvested and barren.  Barns with open, gaping wounds in the rooftops.  Homes with faded, peeling paint jauntily sporting brand new satellite dishes.  Laundry flying outside a shack that should have been abandoned.  SUVs and pick up trucks out numbering cars ten to one.  Pressing onward into the twilight on a Friday evening. 

The destination appearing around a bend in the road, like a mirage.  Out of time, and out of place.  A galaxy of lights and sunny yellow brick facades.  The Grand Resort, built at the turn of the century – the previous one. 

Just about the last thing you’d expect to discover in the economically starved hills of southern Indiana, the place is an oasis of glamour from a bygone era.   Past the town of Floyd’s Knobs, and about 30 miles after you cross Sinking Creek Road.  There is this…

We were celebrating.  The retirement of a lovely wig, and the return of hair.  My two “breast cancer grannies”, Leontine and Doris, invited me for a weekend at The Grand Resort.  Doris finally ditched the wig, so it was time for a party.  We packed in provisions…  mostly liquid. 

Leontine and i booked spa time, while Doris won big at the slots in the casino.   Shopping was also on the agenda, including some antiquing and a visit to the Discount Liquor Emporium.

On the surface, we don’t have all that much in common*.  Doris , 68, is a widow.  Remarkably, she worked though three surgeries, radiation and chemo as the administrator of a local pre-school.  Leontine, 66, is the wife of a retired dentist, and is active in the community – most recently volunteering at the H1N1 vaccination clinic for our county.

They schooled me this weekend.  On many fronts.  Doris, who emigrated from Germany during WWII at the age of four, kicked my ass into next week at Scrabble.  Sort of helpful, with just a hint of cutthroat, she seemed to enjoy the fact that she was the only one of us with just a high school education.  Never mind that English isn’t her native language.

Leontine taught me some travel tricks.  Namely, how to pack mule single malt scotch and other assorted booze in your checked luggage**, without spills or wasted space.  She also explained to me the benefits of using vodka, or apple brandy, when making a pie crust. 

They both explained to me the best ways to take calcium – which will be important for me when my estrogen takes a crap in a few years since i can’t do hormone replacement therapy.  Oh, and they both chastised me for bashing my extremities into hamburger while rolling my bike. 

For my part, i was prepared to give something back.  Packing in the proper gear, i taught them how to make – and eat – jello shots.  Maybe that’s why the Scrabble got a little rough after the third game.  i don’t cook, i distill.  It was all i had…

They were staying over another day, but i drove back tonight.  It occurred to me after i called to let them know i’d made the trip safely that my relationship with these two gals is evolving beyond “breast cancer buddies”. 

Surrogates.  They both have daughters my age.  They know my family situation.  My Mom has never taken care of herself, so she’d have no idea how to teach me about calcium supplements.  Mom was also not the greatest cook.  She did share her secret “Shake and Bake” pork chop recipe, and where to buy the best deep fried mushrooms in town.  That’s something.  But they’ve gently stepped into the gap.  And i like it…

When i called, Leontine said “Thanks for calling to let your two Moms know that you are home safe and sound”.  Maybe i’m just a little hormonal***, but it made my eyes just a little bit squishy.

 

* We have at various times called ourselves the “Three B’s”, for “Boobs, Booze and Brie”, or more recently the “The Four and a Half Tits”, noting the remaining number of breastages amongst us.  A member of Leontine’s bridge group wanted to join, but Leontine told her “You’ve got too many tits”.

** It’s called a “Platypus“, and it’s a hydration system for endurance athletes.  There are endurance athletes, and there are ENDURANCE athletes… This is a clever use of gear…

*** As my son would have said “enjoy it while you can, Mom.  It ain’t gonna last much longer”.

Get up offa that thing…

Leontine found me through an article in the local newspaper  – a nice fluff piece about the importance of early detection*.  She was diagnosed with breast cancer when i was, and she found resonance with my words. 

It was about risk management, “getting on with it”, and about not letting yourself be a victim.  During our surgeries and treatments, we’d meet up monthly to slog through an assload of wine and brie and compare notes.  Mostly, counting our blessings for getting off lucky in the grand scheme of things.

On the surface?  Not much to build upon.  She is in her mid-60’s, the wife of a local dentist, and mother of three grown children – happily spawning a flock of gorgeous grand children.  We found we had a lot more in common than just cancer nuggets buried in our titties.  We drink.  And we dish.  And we play.  And we travel like there’s no tomorrow…

Although our prognosis was similar, she opted for more aggressive treatment, including chemo “just to be damn sure”.  Leontine and i looked forward to our monthly sessions – swapping stories about living aggressively, and dishing gossip on the locals**, as well as discussing the merits of a merkin for a chemo patient!  To celebrate her one year anniversary?  She showed up with a tattoo on her left tit – a pink ribbon with the words “I won”.

Last year, we added a new member to our posse.  Doris, a good friend of hers, was diagnosed with her own pesky little cancer nugget.  And so we meet.   And we drink.  And we dish.  Doris – a lovely 68-year old grandma – is now sporting a smokin’ hot blond wig since she’s bald as a cueball from her chemo.   It is a replacement wig, since she burned the crap out of her original wig by leaning a little too close to the stove.

Last Thursday, the three of us met for another session.  It wasn’t easy to arrange, as we beat through our busy schedules to pick the date.  Doris was looking fabulous – meticulously dressed, matching outfit – right down to the coordinated earrings in her triple-pierced ears.  She’s been dealing with weekly chemo for six months, and is looking forward to being done at the end of June. 

i was surprised to learn that Thursdays are her worst days.  She receives chemo on Mondays, and says she feels ok through Tuesday, but by Thursday, she’s hitting rock bottom, recovering a bit to be able to enjoy her weekends.  Didn’t slow her down much from what i could see***.  Her words: “What’s the point of staying in bed and whining?  Life is out there!  Live it!”

i love these women.  Not to mention the fact that i’ve got friends named Leontine and Doris.  How cool is that?

* It also provided an opportunity to get some shameless publicity for the show i was in at the time of my surgery.  Pimpin’ my cancer to get butts in seats.  No apologies…

** Dentist’s wives know shit about everyone.  Big fun… especially the dirt on the local politicos…

*** We killed two bottles of wine and two plates of brie in about 90 minutes… We are nothing if not efficient!

On life and living…

You’re either living or you’re dying. There’s not much in between.

Despite a diagnosis of terminal prostate cancer, my roommate on the South American trip, MDP*, is living. About five years ago, he was diagnosed with advanced, aggressive prostate cancer. After surgery, radiation and hormone therapy** were unable to contain the cancer, MDP chose the even more dramatic option of surgical castration.

Some success – his “tumor markers” remain low. Quarterly blood tests show good results so far, but someday – perhaps within the next five years – that will change. He is a scientist.  He has carefully studied the statistics and has a solid grasp of probable outcomes.  He is resigned to the prospect that the day the cancer returns, he has about three months before painful bone metastasis kicks in, then perhaps another six months before he dies.

His initial reaction was quite human. Deep depression. Planning his funeral, making all burial arrangements. Planning his “farewell party”, down to the menu and invitation list. Doing the work of depression – preparing and letting go. When all that was done, he said “OK. Now what?”

He set about living. Living life to the fullest, pursuing joyful things. Working. Hosting dinner parties for friends.  Adventure travel.  Managing his medical issues while getting on with life – and not unloading responsibility for his quality of life on anyone else. He is living with cancer.  He is not dying from cancer.

There’s a world of difference.

Sharing a room with him on the trip was quite an experience. He puts his circumstances right out there – often broaching the subject by explaining to people that he is a eunuch***. Openly annoyed when his “diaper”**** slips and he needs to make an on-the-fly adjustment. This is a little unnerving for the unsuspecting, but it certainly starts the discussion, and invites questions.

A reality check for us all.  How many of us know how, or approximately when, we will most likely die?  i’m not a biologist, but i’m pretty sure we’re all circling the drain. My brain function shall cease, my heart will stop and my lungs will sigh one last time… This death thing?  Right up there with taxes on the “certainty” scale.

You make choices every day – and like MDP, i choose to live.  i don’t want to waste one neural firing*****, heartbeat or breath…

* During one of our “slumber party chats”, MDP agreed to let me write snippets of his story – even refusing any editorial rights. Talk about a Brave Little Toaster! He trusts me to tell his story… Ha!

** Prostate cancer feeds on testosterone. By reducing, or eliminating, testosterone, it is possible to starve prostate cancer, so estrogen shots are often deployed. Extremely painful treatment.

*** Got to say that until i met MDP, i’d never discussed castration over dinner!  Ummm… Come to think of it, i’d never had dinner with a castrated man… After seeing it play out a few times?  i got used to it. Interesting to watch how people react when it happens!  And just maybe MDP is amused at the reactions.

**** The radiation was devastating to his lower body innerds. Destroyed much of his “bodily function” hardware in the process.

***** Yeah.  i know.  To be consistent i would need to quit my job and disconnect from The Trailer Park.  Oh, and probably give up blogging – a key source of my current wasted neural activity. Poetic license and all that stuff…

Cleopatra* Will Return After This Brief Message From Our Sponsor

Two people stepped into my life recently, jarring me from the “active denial” that i am a cancer survivor.  i haven’t written much about it, other than to highlight some Trailer Park drama, or my exploitation of the situation to indulge in public nudity.

Sorry. It won’t happen again…

Mom and Dad were planning an Alaskan cruise with a group of friends from their church when he was diagnosed with cancer in 1998.  With a departure date scheduled for just a month post-surgery, they canceled their plans. 

As his condition leveled out over the next few months, Dad settled into chemotherapy treatments every other week, and Mom assumed her role of primary caregiver.  The prognosis wasn’t great, but he’d made the decision to pursue non-heroic treatment for the near term… and was hanging in for his final year or so.

When the daily routine returned to something resembling “normal”, Mom would occasionally mention the trip, expressing her disappointment that their plans were scuttled by Dad’s illness.  Dad wouldn’t say a word as she would tell anyone within earshot “We were booked on that Alaskan cruise but had to cancel when Dad got sick…”

He apparently hit his limit one day when he quietly responded “I’m really sorry I got cancer and screwed up your vacation”.

She didn’t mention it again, at least not in front of me, until a few weeks after he died.