Festivus for the rest of us

First, a few disclaimers:  I struggled this year with what I wanted to be my responsibilities for Christmas and had a hard time balancing those expectations with my new normal energy level. Last year was so much easier.  I was going through chemo and had a bald head.  This year I have color in my cheeks and a full head of hair.  My only expectation of myself during the Christmas festivities last year was to show up.  This year, I thought I had scaled back from my pre-cancer life.  I thought I had kept it simple.  In actuality, I wore myself out.

Another disclaimer, the next couple of paragraphs have no bearing on my great affection for the friends and family with whom I shared Christmas.  They are merely my reflection of my frustrations (and fear) of where I am.

I think next year I'm boycotting Christmas and maybe taking a family vacation instead. Paul, the boys and I just had the nicest trip to DC for four nights. We did exactly what we wanted to do when we wanted to do it, and someone else did all the cooking and cleaning and driving. If only we'd added a few days on the front end to incorporate Christmas Eve and Christmas Day.  (Again, absolutely no reflection of those with whom we shared those two days.)

Two sets of friends we hadn't seen in a month of Sundays each drove at least two hours to join us for brunch on Sunday in DC.  And, we finished off the trip Sunday night with a nice Malbec at a Brazilian steakhouse and watched the boys stuff themselves silly with carnivorous delights.

Life is short (perhaps shorter for some than others). Do what makes you happy. 

Happy Festivus!


P.S.  I have my next PET scan January 2nd.  I should have the results by January 7th.

Tough old broad

Sunday night, just a week shy of my 49th birthday, something stunning happened.  I was called a Tough Old Broad...by my husband.  I'm sure he meant it in the most flattering way possible.

Let's break this one down, shall we?

Tough.  Okay.  I like that one.  Formidable.  Solid.  Knock me down and I get right back up.  When the twins were born, my mother began referring to me as 'The General'.  Keeping two infant boys in line required order and discipline.  Admirable qualities.

Broad.  Some might find it offensive, or perhaps just archaic.  Something Humphrey Bogart would utter about a co-star at the close of a difficult scene in a North African desert.  It has a certain heft to it, indicating a modicum of respect or street cred, certainly less objectified than 'dame' or 'chick'.  All in all, I don't mind it.

Now, I've had to really think about the other adjective and struggle not to take it out of context.

Old.  Surely, my husband didn't mean to imply that I am turning a corner at this upcoming birthday.  (I thought that was reserved for the next one.)  Perhaps what he really said was ole, which I could construe to believe is really rather charming...like Ye Ole Sweets Shoppe on a storefront in a quaint English village.  

Then again, 'old' is, well, old.  Old, as in, the arthritic twinges I'm starting to feel, the great pleasure of an early bedtime, and shaking my fist at those darn kids speeding up and down our street.

But, let me tell you what old really is. It's knowing what's important and what isn't.  It's knowing the things you can change and accepting the things you can't.  Old is reveling in being able to look my children in the eyes without bending down or picking them up.  Old is the comfort of lying in bed beside my husband for over twenty years worth of nights.  And finally, old is being able to add on another birthday, when I wasn't so sure last year if I'd be able to.  Old is good.

And to celebrate its goodness, tomorrow this Tough Old Broad is flying out solo to visit her BFF for five glorious days.  (Don't worry, Paul.  I think the gynecological oncologist removed the remaining wild oats I might have sown...wink, wink.)

  

Sometimes, baseball is the best medicine

Hey, look!  My panoramic lens works!

Game 1 of the division championship series. The Braves stunk it up.  I'm still sore two days later from the walk from the car to the stadium and back.  The game didn't start until 8:30, so we didn't get home until after midnight...on a school night.  

But, it was marvelous getting out on a cool fall night at Turner Field to watch the boys of October.

Keeping the faith

This morning I drove in to the hospital to have my port flushed.  I get this done every six weeks when I'm not having chemo to make sure it doesn't become clogged. I'll probably continue to have this port until I've gone five years without a recurrence...maybe longer.  It's been there nearly a year now, and I've pretty much gotten used to the feel of it, the lumps under my skin that allow easy, mostly painless access to my subclavian vein.

My change of gynecological oncologists a few months back came with a change of infusion centers.  I'm now in a large hospital center, rather than the small suite run just for the patients in the practice I used to go to.  This also means cancer patients of all kinds go to this center to receive their chemotherapy. It's a big place.  Quite a sea of cancer-riddled humanity.

I guess you could find it depressing, but I don't.  It's a comforting place for me.  Patients are being brave and doing what they need to do to fight their disease.  Most people have a friend or family member with them, sharing the time, whether attempting to play a game of Scrabble or just sitting quietly watching tv.

As I'm led to the back of the facility where people with quick procedures like me are handled, I pass numerous bald and capped heads, eyes sleepy from the pre-meds meant to prevent uncomfortable side effects of the chemo drugs.  It feels a bit odd to seem like a graduate of this program, my thick curly locks a testament to the time I logged in one of those reclining chairs, IV pole to its side.  I have a slight desire to point out my port scar as I pass each patient, as if to say, I'm one of you.  I'm just done for now.  Keep the faith.  It gets better.

Me and my short curly locks

My new normal

Since school is back in full swing here in Georgia, I can no longer use the summer hiatus as an excuse for not blogging.  Truth be known, I just haven't quite known what to say.

People ask me how I'm feeling, and I'm often stumped and just say something socially acceptable, like "really well, thank you."  Sometimes I do feel really well.  Other times I feel confused that I'm not feeling on top of the world.  Then, there are other days that are still full of fatigue, hot flashes, insomnia and general bad moods.

Luckily, I've had some wonderful days...days when I don't think of cancer.  Warm summer beach days under an umbrella with a contraband tropical drink and my Kindle, glimpsing up occasionally to be sure my boys haven't drifted too far down the beach in the waves.  An evening of parental pride, watching a band camp final concert, one son on trumpet, one on percussion.  Dinners out with old friends.

But, there also have been days when I just want to crawl back under the covers...which I do as often as I can manage it.  A hefty dose of guilt usually accompanies these days.  Shouldn't I be out living each day of my remission to the fullest?  These are the hardest days to navigate.  

Then I also have some general good days.  Days when I feel like cooking again and helping the boys with their homework and going out to lunch with a friend.  I can now grocery shop without feeling like the walking dead as I roll my cart out to the car.  

I can walk over a mile now or last for 20 minutes on the elliptical. My hair is coming in VERY curly, so curly that it's hard to appreciate the growth because the curls are so tight that additional length is hidden in the spirals.  Some days I like it...others I feel like I got a bad perm.  Funny...I think the process of growing my hair back in is more traumatic to me than loosing it at the start of chemo.  But, I must admit, I'm glad it was back in time for the hot part of the summer.  I didn't relish the idea of wearing any kind of head cover in 90-degree weather.

So, this is me.  Just making my way through this new life of mine, looking for my new normal.

Remission is a funny word

I don't think oncologists like this word.  Oh, sure they like their patients responding to treatment and getting better -- otherwise, why would they do what they do -- but that word carries a heavy load.  There are undefinable expectations that come with it.

I like my new oncologist a lot.  She's this bouncy little thing with jet black straight, thick, bobbed hair that she has the habit of running her fingers through to push it off her face.  She's probably a bit younger than me, but I'm getting to that age where that's no surprise.  While I find her charming, I don't let her girlish behavior disarm me.

Yesterday, during my consultation with her, I outright asked her the question...with two clear PET scans behind me, can I be considered to be in remission?  "Yes, I think you can say that."

Her bet-hedging response didn't bother me.  I feel the same way.  Yes, today, I can say I'm in remission.  And, at least until my next PET scan a little less than six months away, I'll still be considered to be in remission.  And then, I'll either still be in remission, or the cancer will be back.  Simple as that.

Last night as I was lying in bed, I had this thought.  Really, we're all in remission, all of us.  All of humankind.  We're all on a limited budget of time, whether it's six months or sixty years.  Something gets all of us in the end.

Most of us don't have a problem with that.  We just live our lives.  We work.  We vacation.  We have kids.  We care for our aging parents.  We cook.  We clean.  We laugh.  We cry.  We struggle.  We submit or overcome.

I don't know that I'll ever get back to that point of just living my life again.  I'm not feeling very determined today, and I realize that this is a very strange post from a stage IV cancer survivor who's beating the odds.  And I feel guilty that I'm complaining and not rejoicing.

Perhaps this is a normal response.  Right now, it just feels ungratefully weird.

Also

Today is the eight-week anniversary of my lung surgery.  To properly commemorate the occasion, I'm wearing an underwire bra, which transverses the thoracotomy scar.  I might make it another hour before I must make other undergarment arrangements.

That is all.

Empathy

Some of you may have seen this from my Facebook news feed, but I thought it so moving I wanted to include this video on my blog.  (Thanks, Helen Joyce, for originally sharing it with me.)

My first job out of college was in administration at Emory University Hospital.  I didn't have much contact with patients, but one morning while walking down the main corridor of the hospital, I saw my surroundings in a new light.  Most of the patients who came to Emory were really sick and needed extra expertise that their primary care doctors couldn't provide.  Many of the patients and patient families that I passed in the corridor that day were having the worst day of their lives.

This realization was sobering for my 23 year-old self.  I was simply headed to the snack bar for a Diet Coke before getting back to the next stack of papers on my desk.

Of course, now I can relate to this video as a patient, but it still gives me added valuable perspective.  

As the quote that begins the video says:  

Could a greater miracle take place than for us to look through each other's eyes for an instant?               -- Henry David Thoreau 

P.S.  Don't mean to be an advocate for the Cleveland Clinic necessarily.  They just happened to produce the video.

 

Also, it looks like the video might not download on mobile devices...at least not my iPad.  Sorry.

Just make the cowlicks go away

Tomorrow, I go for my first post-chemo hair cut...trim...shave?  It's been three months today since I had my last chemo treatment.  It's time to see what a professional can do.

I've got a half curl, probably more of a cowlick (do you Brits use that word in this context?), poking out from behind each ear.  And I've mentioned previously the sideburns that must go.  (Why are they called "burns"?)

I kinda hope she recommends shaving it all down to the same length to promote faster, even regrowth...or some such Glamour magazine-like urban legend.  I have to admit that I've enjoyed just washing my head with Dove soap and simply rubbing a towel over it for the styling portion of my beauty routine.

I've even Googled "post chemo hair styles" just to see what others have done.  Not much help, but interesting.

Wish me well.  Maybe you'll get a picture tomorrow of the new, new, new, new me.  I guess that's the  great thing about hair.  You can always reinvent yourself.

This cancer stuff is just full of life lessons

"Magnolia?"

"Nope, definitely gardenia," I pointed to the neighbor's bloom-laden bushes.

Paul and I are padding along our street for our nearly nighly walk.  We're both just wearing our Crocs, because I'm still far from needing a shoe to support much distance or impact.  At the Croc outlet store a couple of weeks ago, I found a pair of teal colored ones in the bargain bin.  Now, even my comfy, clown-like shoes support the cause.

I'm up to a half-mile, still breathless during most of the time.  But, I can now carry on a conversation limited to a few words at a go.  I'd expected to be further along by now, but the process is what it is.  Patience.  I've not really exercised in a year's time, and I've never had my chest cavity cut open and chunks of my lung removed.

I used to be worried when I'd get so easily breathless, like it was the sign of another pleural effusion and trip to the ER.  But now I know it's just part of the process.  I'm pushing my pulmonary limits, and it's the only way to get better.  The anxiousness is gone, a good thing...panic only makes the breathing more labored.  Slightly labored breathing is what you want.  You runners out there know what I mean.

"Tiger lilies?"

"Day lilies."

I'm not entirely sure Paul is really that interested in the horticulture of the neighborhood.  I suspect he's trying to engage my mind with something else other than the task at hand.  But, perhaps I'm not giving him enough credit.  Rather endearing either way.

My hair has grown out about three-quarters of an inch in the front...perhaps more in the back, where it's coming in very curly.  I'm getting brave enough now to go out without some fashion of head cover.  (The summer heat's a motivator too.)  Every now and then a neighbor will drive by and stop to chat for a few minutes.  "It's good to see you out and about!"  "Like your new summer 'do!"  It feels good to be social again.

Unfortunately, with the regrowth of my hair, comes other hairy changes.  Since my estrogen is practically gone, the normal amount of testerone that all women have circulating in their bodies is free to work its magic.  I'm developing nice sideburns.  Lovely.  And the chin hairs are becoming beard-like.  Waxing is my solution for now...but I see some laser work in my future.  TMI?  Sorry.  Just part of the journey.

As hard as it is sometimes to motivate myself to round Paul up for our walk, I always feel good while I'm out and when I get back.  When we first started, I'd have to hold on to his arm for stability, and we perhaps might only make it 50 yards before needing to head home.  I need to remember those days.

I look forward to celebrating my first one-mile stint.  I did make it two-thirds of a mile once, thinking that one-mile goal wouldn't be far away, but the next week my stamina dropped back to my half-mile jaunts.  Two steps forward, one step back.  This cancer stuff is just full of life lessons.

So, if you're local and you fancy a slow, short walk some morning, come on by.  My limits may far from equal your exercise routine, but I promise you a nice cup of coffee or tea afterwards...and some breathy conversation.

Just the facts, ma'am

Well, it's been a while.  I'm going to share just a few facts in this entry, but I'm working on a more reflective piece I'll share soon.

I had another PET scan last week that came out perfectly clear.  I'm still having trouble relaxing about it, but I'm getting there.

I'm nearly healed entirely from my thoracotomy.  The incision is now only a little sore, though I've still got to work on getting my full pulmonary function back, and that just comes from walking and time on the elliptical...and patience.

I did decide to change gynecological oncologists.  I've already had several pleasant experiences with her and her staff.  They actually return phone calls...and the oncologist herself called to give me my PET results.

No more chemo for now.  Since I've had two clear PET scans in a row and since my body could stand to heal more from surgery, we're giving it a rest.

So, we get to settle into a fairly normal summer.  There's something very comforting about that.

Hit or miss

Today, I'm doing pretty well. Yesterday...not so much. 

But, isn't that just life?  Yesterday, so-so. Today, mostly good. 

There's something about having a chronic illness that makes you become quite the hypochondriac, over examining each little blip on the radar like it's going to be the direct hit that sinks your battleship rather than just a drop in the bucket that causes a harmless ripple in the otherwise calm seas. 

This last year has been fraught with some rough seas, but I'm still sticking my toes in the surf every day. Shouldn't we all?

And even if my battleship gets a direct hit, there's often a lifeboat to make my way into. 

I've been waiting for your call

It's a quiet rainy Sunday morning. So far, I'm the only one up.  Just my coffee and my iPad and my recliner.

Today is going to be odd because yesterday marked the end of a month-long stay of my dear friend Patsy, who trekked all the way from Austin, Texas to be here with my family while I recuperated from surgery.  The house isn't going to quite feel complete.

You might remember that the planning for this surgery happened rather quickly.  I didn't even have it confirmed until the family was on vacation in Puerto Rico early last month.  The first phone call I made after hanging up with the surgical coordinator was to Patsy.  Could she come to Atlanta in ten days to help out...for a month?

Of course, she responded.  I've been waiting for your call.

Patsy and I met about 25 years ago while we were both working at the Emory school of medicine.  She was a medical illustrator and I was a wet-behind-the-ears medical writer/editor. She and I got to know each other while I was helping a faculty member put together a second edition of a surgery textbook for which Patsy had originally done many of the illustrations by hand.  

Patsy and I were drawn together as friends not just because we shared a similar sense of humor but also because we were similarly entertained by the political intrigue of working in the administration of a medical school.  We'd quietly observe during the work day and then have a giggle fit over lunch.  We both had an odd mix of respect and irreverence for our employer.  It made for interesting ways to get through our days.

Years passed, work and lives changed.  I quit Emory. Babies were born...she was there for a week with me when Allen and Boyce were newborns.  

Patsy retired from Emory and moved to Austin to be near family while we were living in France, though she still found a two-month period to come live with us over there.  

To call her friend is an inaccuracy.  She's family.  My boys have always called her Aunt Patsy, and she knows if she ever is wanting for a table to sit around for Thanksgiving or Christmas, ours always has an extra place with her name on it.  

I'll be depressed today.  Right now it's about the time she'd come downstairs to join me for our morning chat. 

We have a kitchen full of goodies she made and left for us, so there are some vestiges of her being here with which to console ourselves.

But the cheese straws and banana bread will run out much too quickly before I'll be longing for her to be here again.  I know, though...when I need her all it takes is a phone call, and she'll be here.

So, put up your feet today, Patsy.  You've earned some down time.  And you never know when that phone is going to ring again...

One year of sharing the ride

The National Cancer Institute's current published five-year survival rate for stage IV endometrial adenocarcinoma is an abissmal 15%.  I'm one year in, hoping to be the enigma, because it was one year ago today, during my hysterectomy, that my cancer diagnosis was confirmed.

Oh, I moan and complain about fatigue and pain and doctors and itchy wigs and disappearing eyebrows...but I'm still very much here, thumbing my nose at that 15%.

I've still got a ways to go...at least this one more round of chemo I'll be starting soon.

In the meantime, I celebrate the easy days and the hard ones, lunch out with a friend, being able to attend my sons' spring band concert.  I'm thankful for all the family and friends that have brought a dinner or run an errand or entertained my kids for a weekend. I'm grateful for those of you who have sent notes of support and encouragement and jokes and stories that made me laugh out loud.

I might be living a life with cancer...but I do so knowing I'm so lucky to be sharing the ride with all you wonderful people.

Juuuust right

"I just want to get back to the stage where I'm just doing chemotherapy."

I actually found myself saying this to a friend recently.

This thoracotomy recovery business is for the birds.

Here, we'll give you this big bottle of pain medication. We really don't want to refill it, so don't use it too much...but don't use it too little either. Use what you need, but then wean yourself off. I call it the Goldilocks approach to post operative pain management. Only I can't seem to find that perfect titration that is juuuuust right.

On the upside, I must say that my 12-inch scar looks really nice...as surgical scars go. It has a real artistic arch to it. My surgeon's best medium is definitely human flesh.

The tissue assays still have not come back from the large nodule taken during thoracotomy, so we are still waiting to see what chemo blend will be recommended for me. My surgeon says he wouldn't have recommended starting chemo for at least a month after surgery any way, so I don't feel like I'm loosing any ground waiting.

In other news, I'm seeing a new gynecological oncologist next week...I guess for a second opinion. I don't think she's any better a doctor than my current physician, but given that my current oncologist's practice shuts its doors officially tomorrow, I thought it good to have a back up plan.

Well, I'll leave you with that. It's time to go see if I can measure out some porridge that is juuuuust right.

Trying to get my blogging groove back

My day started with Paul telling me I had bed head.

Think about it.

Yes, hair has been sprouting back in all sorts of desirable and unwanted spots. (Why do chin hairs have to be some of the first to reappear?)

I'll get you up-to-date and explain why I'm not getting too attached to any of my newly sprung hair yet.

I'm at home, recovering well from my thoracotomy, which took place April 18th and kept me in the hospital for five days. I did have a minor set back which landed me back in the hospital for a few days more, so some excess fluid could be drained from my chest cavity. But all is well now. Apparently, this just happens after thoracotomies sometimes.

I do tire very easily, but I'm needing less and less of the pain medication...my excuse for not blogging much lately.

The pathology results from the thoracotomy are still incomplete. We do know there were no cancer cells discovered in the two smaller nodes the surgeon found during the surgery. However, there were some cancer cells still found in the larger nodule, even though the most recent PET scan showed no cancer in that nodule.

We are waiting on the complete tissue assays of those few remaining cancer cells to help my oncologist decide what kind of chemotherapy I need next. I'm guessing as soon as the results are in, I'll start chemo again...and loose my ability to have bed head...again.

We should know any day now.

It's late but we're home

Not all questions answered yet, but all is well for another day.

Short, likely typo-laden, update

Well, I'm still at Northside, but there is progress. CT indicated some fluid had collected in my lower right chest cavity. Had that removed this afternoon. Immediate relief!  Hoping I can go home tomorrow while waiting for test results.

Lastest unfun developments

The last couple of days have been difficult ones. I've had a hard time managing my pain medications, and I've been getting increasingly short of breath and increasingly short of patience with my iPad's autocorrect feature.

I have been at home recovering from my thoracotomy procedure since Monday, April 22nd. However, since increasingly frustrating episodes of shortness of breath, Paul and I decided a trip to the hospital's emergency department today was a good idea. Nothing's seems to be of a dire nature, but I'm being kept overnight for observations.

My main complaint is that I can't quite gets my words to come out the way I want them too.

Will keep you posted as medical science and social networking capabilities improve.

This is what I've been trying to get out for at least three days now

Iced. …-_q1




Truly. I've been drooling over my iPad, and I'm convinced this phrase is somehow linking me to the universe. I can't just delete it and move on.

I've also come to understand the two greatest inventions in the history of humankind are Spanx and OxyContin.

Blessed

There's no more appropriate word to describe how I feel right now.

I got a reasonable amount of hospital room sleep last night. All my tubes and connections were removed just a little while ago, with the exception of my oxygen level and chest monitors. I'm almost free to roam the corridors at will.

Thank goodness Paul went home to sleep in his own bed last night. He'd have an apoplectic fit every time I moved in my hospital bed to reposition myself, afraid I was disconnecting some sort of life essential line or probe.   I think today will be much easier for him too.

But, back to the blessed concept..a surgery that turned out to be routine. A recovery that already has me doing laps around the hospital corridors...ok, they're very slow laps with a walker, but they are laps nonetheless. The nursing staff is absolutely top knotch.

And later today, Paul is bringing the boys for a visit.

I'm baack

And I'm feeling amazingly well. Very woozy from the pain meds, but feeling so much better than I ever thought I would. More soon when I get more of my wits back.

Breathe...

Guest blogger Paul here...Beth will return shortly

Beth's surgery went very well. Dr. Moore called it "routine", and one of the smoothest he has done in a while. He took out the one nodule we knew about, and two small ones he found while while feeling my wife's lungs. So Beth ticked up the % of patients where he found something more (see previous post).

No surprises, and no complications. I can breathe again.

Thanks for everyone's thoughts and prayers. We're almost done with this odyssey.

The laying on of hands

My surgeon for tomorrow is a bit of a cowboy, pretty much like every cardiothoracic surgeon I've ever met before, though this is the first time I've met one as a patient, not as an employee. I think they take on this self-assured swagger because there truly is something God-like about opening up someone's chest and holding their heart or lungs in their hands, organs so central to life.

I've had surgeries before, but never one quite like this one. Gallbladder removed?  Pfft, piece of cake. Twins delivered by C-section, no problem...especially with that little handheld pump that allowed me to give myself pain medication whenever I wanted. Even with my hysterectomy, I was underwhelmed with the recovery process.

But, this...this seems like the big time. Once the surgeon makes about an eight-inch incision on my side, he proceeds to cut around or through muscles and nerves and spread my ribs apart until he can see my right lower lobe of my lungs. Then, the magic begins. The right side of my lung is deflated, so that during the surgery I'm breathing only through my left lung.

Then the surgeon puts his hands inside my chest and feels my deflated lung. He says this is the best way to find abnormalities, through touch, not sight. Here I've had PET scans and MRIs and robotic surgeries...but with all that technology, the most effective way to diagnose my lung is by feeling his way around. The laying on of hands.

It's an amazing thing, this process. I'm both awed and terrified by it in equal measure.

My surgeon's name is Dr. John Moore. No relation, though he has taken to calling me Cousin Elizabeth. He's done a bajillion thoracotomies. My lungs couldn't be in better hands...literally. I've read up on thoracotomies and know that control of post operative pain is a big issue. At my last appointment I asked him what his philosophy was for pain management. His response? "I don't want you to have any." Good answer.

I'm the first case tomorrow, which means Paul and I must be at Northside Hospital at 5:30 am. Surgery is due to start at 7:30. I'll spend my first night in the ICU and won't make it to a regular hospital room until sometime Friday. If all goes well, I'll be discharged on Monday.

I'll have Paul post a brief update tomorrow to let everyone know how everything's going.

Oh, one last little note...today is mine and Paul's 20th anniversary, the thoracotomy anniversary!

I'll see y'all on the other side.

A 21st century life

I just finished reading a biography of a remarkable woman I'm embarrassed to admit I'd never heard of until recently, Martha Gellhorn. The book was written by the daughter of one of Gellhorn's close friends. It evolved mostly from Gelhorn's personal diaries and notes she took as a war correspondent for three wars: the Spanish Civil War, World War II, and the Vietnam War. Another major source were the letters between Gellhorn and friends and political and literary luminaries of her time. The title of the book is Martha Gellhorn: A Twentieth Century Life.

I wonder if that book would have been able to be written if she had lived a 21st century life. Would her notes have been recorded on her laptop? Her journal on her iPad? Would her correspondents have saved her emails, and she theirs?

I mean truly, how many emails do you save for posterity? And what is posterity in the digital age? Let's say Gellhorn wrote her 21st century notes in Microsoft Office 2010. Would the daughter of a friend be able to read that version forty years later when she got the notion to write that book? Would they be saved on some external hard drive gathering dust in some attic somewhere? Or worse, what if it was on a flash drive?

I remember 5-1/4 inch floppy drives from the 80's. All my college papers are on those somewhere. What are the chances that my grandchildren could one day find and read those files? (Yes, I flatter myself.)

I'm sure all the great libraries are finding ways to preserve the work of our notable 21st century writers...but their emails? Their e-cards? Their LinkedIn accounts? Facebook? Blogs? Twitter? Is Twitter forever?? And does The Library of Congress care about it?

When I started writing this blog, one of my expressed purposes was creating a legacy for my children, in light of a rather dire cancer diagnosis. But I don't have a clue how to preserve these electronic words for them. Am I going to print them and put them into some sort of archival binder? Is Blogger always going to be around?

And, then there's the art of handwriting. It's not taught in our American schools anymore. The teachers just let it evolve on its own because soon the kids will be composing everything on a laptop, copied to a flash drive. There's no more personality in the way you physically examine writing...just the choice of which annoying color and font-of-the-month to use.

And, then there's the relaxed time frame of traditional letter writing. You put a letter in a mailbox, and it takes a few days to arrive. Then the recipient may take a few days before she replies. It's not a system that easily allows for reactionary, heated exchange. You, by necessity, have time to consider your words and your state of mind.

Something's being lost here, people. And while I fully embrace the technical age...hell, I'm writing this entry on my iPad at thirty thousand feet...I'm worried about our collective human history that's tied to WiFi and battery life and a dependable Internet service provider...oh yeah, and electricity. All it used to take was a pen and some paper...or some colored clay and a reasonably flat cave wall.

So, make me feel better...go pull out some old stationery or even just white printer paper, if that's all you've got...and write a letter IN YOUR OWN HANDWRITING to someone. Put it in a real envelope...don't panic, they have some for sale at the post office if you don't have any laying around the house. Put a stamp on it (they sell those at the post office too)...and mail it, the old fashioned way.

One day, that letter may be a crucial part of your life story.

From reform school candidate to model citizen

At the beginning of last week, Boyce's home room teacher selected him as Student of the Month for his home room class. To be Student of the Month, a kid must exhibit good citizenship, a helpful nature, and a motivation for learning. This designation is for behavior shown last month...the same month the sixth grade assistant principal summarily assigned him a total of 5 1/2 hours of detention for basically shoving two kids.

On Wednesday of last week, Boyce got to have breakfast with the principal (not the assistant principal), along with the month's other recipients.

Oh, the irony.

I hope you understand. I just had to get back to the island.

At this very moment, I'm sipping on a piña colada on our rental villa terrace. From my vantage point, I'm watching Paul teach Allen and Boyce how to snorkel in the swimming pool that overlooks the Atlantic Ocean from the north side of Vieques, an island just a 30-minute puddle jumper plane ride southeast of the main island of Puerto Rico.

Paul and I spent a marvelous week here last year, thinking often how much we'd like to bring the boys down here with us. Well, it's spring break. I'm feeling much, much more myself, now almost seven weeks out from my last chemo session. We had four plane tickets that were about to expire from an aborted trip last summer because of my surgery. And I found a last minute deal on a villa right on the ocean. What else could we do?

Paul and I are not Caribbean resort-y kind of people, and that's what we love about Vieques. There is one small resort on the island that's quite easy to overlook. The rest of the island is frozen in time. Pristine, completely undeveloped beaches on the south side of the island, most of them part of a national wildlife refuge...so, they're always going to stay that way. A smattering of small grocery stores that may or may not have the supplies you're looking for, but somehow you make do. A handful of really amazingly good restaurants, filled in with little mom and pop cafes and food trucks with simple delicious Caribbean fare like pork carnitas and empanadas.

So, here we are on our first family vacation in over a year. And, I must say, I've earned this one. We've earned this one.

Next week, on April 18th, I'm scheduled for a thoracotomy, an eight-inch incision or so surgery on the right side of my torso to access the right lower lobe of my lungs, where the remaining remnant of a nodule resides. I'll be in the hospital for at least five days, the first night of which will be in the ICU. I'll likely be on narcotic pain medication for eight weeks after the surgery, due to surgical incisions through major muscles and nerves. This is a big deal, but it's my best chance to cure that lobe of any malignant disease.

Then, about two weeks after the surgery, I will do at least another three sessions of chemo.

Like I said, we've earned this vacation. And we are grateful for every moment.

Other good news...my mom came home from the hospital Friday and is doing well. Thanks to all of you for your kind thoughts and prayers for her recovery.

Being in the present

Just a little update. My thoracic surgeon presented my case as a surgical candidate to the hospital's tumor conference yesterday. I'll find out the results of that, as well as my pulmonary function studies and head MRI on Friday, when I have an appointment to see him again.

If all goes as I think it will, I'll be having a thoracotomy to explore the right lower lobe of my lungs sometime in the next few weeks. Then, I'll start another (probably shorter) round of chemo a few weeks after that. The really cool thing is, they'll test any residual cancer cells in my lungs to find out what formula of chemo will likely work the best. They previously did this with the initial core biopsy they took of the largest nodule back in October. However, results may have changed, as cancers can become resistant to previously successful chemo drugs, or chemo can simply change the cancer cells so that a new chemo cocktail is required. I think it's amazing that this sort of analysis at the molecular level is available to us cancer patients now.

In other news, my 81 year-old mother had to be admitted to the hospital yesterday for IV antibiotics for chest congestion. I think it's more preventative than anything...to make sure it doesn't become something serious like pneumonia. Healing thoughts sent her way are most appreciated.

I'll be in touch soon.

Hey, teacher, leave my kid alone!

(Actually, it's the sixth grade assistant principal who is the object of my ire, but I just couldn't pass up an opportunity to reference Pink Floyd.)

Over the course of one week, my son Boyce twice found himself sitting across his assistant principal's desk, having a disciplinary discussion about his behavior in school. My child, who has never been in trouble at school since he toddled into preschool at 19 months-old, definitely got caught this time on the wrong side of Gwinnett County's "No Tolerance" policy.

His first offense? Shoving a kid with his trumpet case so he could make his way to his seat in band. When asked why he did it, he said he was just having a bad day. For this he received an hour and a half of after school detention.

Fast forward a few days. Boyce arrives at the door of his science classroom only to find that the class's token disruptive kid has locked the door and is laughing maniacally at Boyce through the door's window. A good Samaritan kid, who'd managed to gain entry before the door locking inspiration, unlocked the door so that Boyce and the remaining half of the class were no longer barred from entry.

When Boyce entered the room, laughing kid gets right in his face and has a pretty good chuckle at Boyce's expense. Boyce's response? A swing of his padded binder at the kid...resulting in four hours of Saturday detention, and a second violation of part D of Major Rule #5 of the county's code of conduct. Other parts of Major Rule #5 outline offenses such as assault and battery of another student leading up to and including murder. I'm not exaggerating. Once again, Boyce reports to the assistant principal that he was having another bad day.

Interesting fact about both instances? Neither of them was witnessed by a teacher or other adult who could adequately put the actions into context. In both cases, the principal made her determinations based on the recollections of 11 and 12 year-old kids.

OK. I'm going to take a deep breath now before I go any further.

I do not deny that Boyce's behavior was unacceptable. I wouldn't even begin to excuse his behavior because of the craziness our family has been through for almost a year now as we've navigated through my cancer treatment. I wouldn't even suggest his infractions should have been overlooked because, at the time of his bad days, we were waiting for my PET scan results to find out if the 18 weeks of chemotherapy I just completed had extended my life.

But Mother Mary and the little baby Jesus, cut the kid some slack.

I accept some of the blame for the situation. Back in October, when we found out I had metastatic disease and needed to begin chemo right away, I contacted both Allen and Boyce's teachers to tell them what was going on with me. One particularly wonderful teacher of Boyce's immediately involved the guidance counselor so she was up-to-speed. It just never occurred to me to contact the administration. I assumed, obviously incorrectly, that any out of character behavior of my sons would come to the principal by way of a teacher.

The assistant principal knows now, but I'm not convinced it would have made any difference if she'd known before. "No Tolerance"...even if you're not sure if your mom's going to be alive in a year. I'm not convinced the system allows for any leeway.

This I do know. I'm very proud of my boys. They're both in gifted-level classes in all their major academic areas and nearly making all A's. Boyce hasn't missed a single day of school this year, and Allen's missed only one, when he got his braces. They've learned how to wash their own clothes and how to make a simple meal. They've gotten up and on the school bus by themselves when Paul and I have had to leave very early for chemotherapy. They've had to endure more stress and worry than any 12 year-old should.

Thanks for hearing me out. I'm going to meet with the assistant principal next week and submit a letter outlining our family's extenuating circumstances to be included in Boyce's file to provide some context. I needed to get all the snark and anger out before doing this.

Any educators out there who have any insight to share?

My bald badge of honor

It's an amazing sensation to be able to feel your scalp unencumbered by hair. Well, mostly. Not quite all of my hair fell out during chemo, but there was lots of open space that felt so incredibly smooth and soft. I couldn't keep my hands off my new head. All my eyelashes are gone now but a shadow of my eyebrows remain, just enough to help me draw them in easily.

Several days ago I was mindlessly rubbing the back of my head, and I suddenly realized I was feeling new fuzz. It's been five weeks tomorrow since my last session of chemo, so it's time to start to feel a little extra fuzz. I have to admit, I'm feeling a little wistful. It's been a rather carefree way to live, this baldness of mine. No shampoos and conditioners and styling gel and styling mousse and hair dryers and round brushes. No time spent wondering, will I wear it curly or straight today? Up or down?

So, to commemorate the beginning of the end of my alopecia (for now), I celebrate with a photo of me in my (mostly) hairless, makeup-less, steroid jowly and puffy glory. 

Decisions, decisions, decisions

Still a little shocked and giddy from my good news, we've managed to navigate our way through some of the decisions we're facing.

We've decided to cancel our trip to MD Anderson. After the outstanding results from my PET scan, we're feeling less of a need for a second opinion. I've asked MDA to keep my file in case we decide to go there again.

Wednesday, I had both my pulmonary function tests and head MRI. The thoracic surgeon will take these results, along with my other medical records, and present my case to the hospital's tumor review board for input and recommendations for surgery and future treatment. This will occur on April 2nd. The surgeon will contact me afterwards about scheduling surgery, assuming all goes well with my evaluation. He acted like it was mostly pro forma.

I've decided to request the open thoracotomy procedure so the surgeon can actually get his hands on my lung where the remaining nodule resides. Doing so will allow him to thoroughly evaluate my lung for any other abnormalities and remove them. The downside?  A potentially long, uncomfortable recovery. But, I've decided the benefit is worth the cost. They just better give me some most excellent drugs. 

I'm encouraged and feeling very hopeful, but I also feel like I have miles to go before I sleep. 

Great news...but I'm not done yet

My post-chemo PET scan showed no evidence of metastatic disease! The two smaller nodules in my left upper lobe are gone. Gone!

The larger nodule in my lower right lobe went from 2.2 cm in the previous scan to 0.9 cm in this scan. But, the big news is that it took up none of the radioactive glucose, which means the cancer cells are dead. Dead!

However, you might remember I had an appointment with a thoracic surgeon this morning who specializes in malignancies in the lungs. After reviewing my records, he made a very strong case for going in and removing what's left of that remaining nodule and have a look around the rest of that lobe to see if there's anything that the PET scan missed.

He doesn't advocate doing the surgery laparoscopically or robotically because he can't explore the lung nearly as thoroughly. So, we're talking about an open incision on my right side, closest to the affected lobe. That being said, he will support whatever my wishes are for surgery...open, laparoscopic, or none.

He also said he'd recommend some more chemo after the surgery, sort of as an insurance policy. He wants to order an MRI of my head...just to be sure there's no cancer there. The PET scans only went as far up as my ears. And, he wants to do a pulmonary function test to see how healthy my lungs are. My pulse-ox today was 97. Can't ask for much better than that.

All in all, what he said today made sense to Paul and me, but we haven't made a definitive decision. We've got to think about it a bit.

We left the surgeon's office just in time to sit in my oncologist's waiting room for two hours, until called back at 2:00 pm for my 12 noon appointment. But, once we got in the exam room, things went rather quickly, for a change.

My thoracic surgeon had already called my oncologist to discuss his recommendations. My oncologist concurred with the proposed plan. Now, Paul and I just need to decide.

We're also reevaluating our plans to go to MD Anderson next week, after finding out I had such a great response from my chemo. I have to admit, I like the assertive suggestions from the surgeon. I've got a lot of living left to do, and I want to be as aggressive about my treatment as possible.

As far as the oncology practice closing goes, the details are still very sketchy...they don't dissolve until mid-May. However, each of the partners is still staying in the Atlanta area, but they will likely be affiliated with a different hospital. That's all I know. So, I'll have to decide if I want to stay with my current oncologist, wherever he ends up, or if I want to use this transition as an opportunity to make a change. You might remember, for the most part, that I like and respect my oncologist...I just think the practice is very poorly run.

So, great news! With some complicated decisions to make.

More soon.

Surprise, surprise, surprise

Through unofficial back channels, I found out yesterday that my gynecological oncology practice is shutting down. Not merging with another group. Closing its doors.

Tomorrow, I have my appointments to go over my recent PET scan, meet with a thoracic surgeon, and talk to my oncologist about what's next with my care. I guess there's another question to tack on...just where will I receive my future care?

Dealing with a cancer diagnosis is challenging enough. There are so many unknowns and ups and downs. It just doesn't seem fair to have to add another unknown to the mix.

Yes, I haven't been particularly thrilled with the running of this practice for some time, so perhaps this turn of events will all be for the best. But right now, it just feels like another hurdle to clear. At least I'm kinda on a treatment hiatus right now, or I'd really be freaking out.

Wish me well for tomorrow. Lots of questions to be answered.

No results yet

I have decided not to get myself all tied up in knots, trying to wrench the results of my PET scan out of my oncologist's office over the phone. So, I am very peacefully waiting until Monday when I have a scheduled appointment.

I'll post as soon as I know.

PET scan

By 10 am yesterday, I was in the always crowded Outpatient Imaging Center waiting room waiting to become radioactive.

This was my fourth PET scan, so it's become rather ordinary. A patient care specialist -- read 'health insurance narc' -- registers me for the fourth time, copies my insurance card and drivers license for the fourth time, and has me sign four different documents for the fourth time, promising to consent to become radioactive, pay for this privilege or surrender my first born, affirm that all my billing and contact information is correct, and give up the name and phone number of my closest relative they can harass if I don't pay my bill and flee the state with my aforementioned first born.

A few minutes back in the now standing-room-only waiting room, and I'm called back by a radiology tech to get the real business underway.

By the way, this was my look for yesterday. I was aiming for something a little above yoga casual.


Here's my black cloche hat with my grandmother Mammy's brooch. 

The tech puts in an IV line in my right hand, draws a little blood to check my glucose level. I've been fasting since midnight, and if my glucose is too high, I can't have the PET scan done. My level is fine.

Then, the tech exits the room and returns with a heavy lead box containing my radioactive glucose injection. Preventing radiation exposure to the employees is important, hence the lead box.  For me, ah, no problem.  I'm only zapped every couple of months.  But, the tech always advises me to drink plenty of water the rest of the day and stay away from children until eight hours after injection. At my first PET scan, that kinda freaked me out.

After injection, the tech again leaves me to my own devices, for one hour this time, while the solution circulates my body, hopefully finding no cancer cells to cling to.

At the end of the hour, I'm escorted into a room with the PET scanner.  I lie down on the shoot that will send me into the large circular imaging machine...yes, just like you've seen on tv. 

The whole thing takes about 15 minutes, then my radioactive self is released onto the unsuspecting public.

Now, we wait.

 



Upcoming events

I have my next PET scan Thursday, two days from now. When I find out the results depends on how assertive I decide to be with my oncologist's office, because, Lord knows, nobody there is just going to spontaneously pick up the phone and call me.

Monday, March 18th will be an action-packed day. At 9:30 in the morning I have my appointment with a thoracic surgeon to review my PET scans and determine if I'm a surgical candidate for any remaining nodules in my lungs. Then at noon, I see my oncologist to talk about what's next.

The week of March 25th, Paul and I head to MD Anderson for my second opinion. Currently, I'm scheduled to see one of the gynecological oncologists on Monday morning. The patient liaison has advised us to plan to be there the whole week in case I need additional appointments or tests. They seem quite thorough.

In the meantime, I'm trying to get caught up on emails. I owe more than several of you a word or two. I'm just now feeling like my head is coming out of the fog of the last chemo. I beg everyone's pardon.

The chemo wardrobe

Recently taking stock of my closet, I realized my clothing now falls into three categories: date night, nice casual, and chemo.

Before my diagnosis, my wardrobe was made up of pretty much just the first two categories, though I did have one pair of yoga pants, one pair of shorts, and a few oversized t-shirts for exercising. Now, all I wear is an assortment of yoga casual, which says I'd really rather be in my pajamas but I'm going to make myself presentable enough to meet the UPS guy at the door.

I'll even go to the grocery store in my yoga duds, drop the boys off at school, or go through the Starbucks drive-thru. (Oh yeah, I also do yoga in them.)

But, the main reason I expanded my yoga apparel was chemo days. Truly, you'd prefer to be lounging in your jammies for such an occasion, mostly so you don't have to change your clothes when you get home before you fall in bed. But, then there's that presentable enough for the UPS guy issue.

However, during one of my sessions, there was this well-heeled woman getting her chemo the same time as me. She looked liked she just stepped out of Ann Taylor, complete with a full face of make up and wig.

I looked like I'd just stepped out of pilates class, wig-less and cap-less, with nothing on my face but Carmex lip balm. Chemo attire.

And we all know that these days it's much cooler to underdress than overdress.

I'm just glad the occasional girlfriend comes by to take me out to lunch, or I'd probably never wear pants with a zipper again.


P.S.  A reminder for my British friends. In American parlance, pants are trousers, not underpants. Though I must admit, the idea of zippered underpants is, at the very least, worth a giggle.

Calling all comedians

Help!

I need some levity in my life right about now, and I'll accept it in any form. Funny book, tv or movie suggestions. Entertaining posts. Emailed jokes or personal stories. Funny greeting cards. Funny websites, YouTube videos, cartoons.

If it's made you merely crack a smile or laugh until you choked on your own spit, I want it.

My mental health thanks you in advance.

Now what?

I am stunned by how little relief I feel from finishing chemo. For 18 weeks, that was my goal, just get through it. Now what?

I've got to find my new raison d'être. Taking a nap can be the highlight of my day for just so long.

I heard about this. It's not being diagnosed with and treated for cancer that's hard. It's the day-to-day living with cancer that's the challenge. I feel this incredible self-imposed pressure to do something meaningful, something exceptional. Something that makes this time I've hopefully gained from going through chemo worth everything.

Surely I've got some new lease on life. Some important perspective to share. Life wisdom gained.

But, right now, I got nothin'. The thought of making plans for anything is terrifying, and yet, I'm not feeling terribly patient.

I guess when napping becomes boring, something will come to me.

And the winner of the second opinion is...

I'm really, really, really tired this week after my last chemo session, so I don't have much that is coherent to say...other than I'm rather out of sorts that the third season of Downton Abbey is already over.

However, I wanted to share that we decided to go to MD Anderson for my second opinion. I've made the initial contact and I can likely be seen next month. Got to get all those medical records together and sent to them before they'll confirm a date.

Now, it's time to confidently move forward...after another nap.

Last chemo tomorrow

Tomorrow will be my sixth and final day in this chemo treatment cycle. It's been 18 weeks since I started. You'd think it would be time for a party, but I don't feel like celebrating. I'm not so naive to think this is the end of the story.

It will be another nail-biting three weeks before I have yet another PET scan to find out if the tumors have shrunk or, glory be, disappeared. NED, no evidence of disease. That's what we're going for.

If the tumors are still present, I will see a thoracic surgeon to determine if I'm a surgical candidate for tumor removal. From what I've read, I think I can be. The primary tumor is out of the picture, the lungs are my only place of metastasis, and there are only three small tumors there. If my current chemo hasn't zapped them, it's good to know that there is possibly another avenue to pursue other than more chemo.

If, if, if, if, if.

But, as long as there are ifs, there is hope.

The weekend report

Just a quick note to say the weekend away was lovely. We had good food and wine. The inn was very comfortable. And, on a gloriously sunny Saturday we plundered through antique shops for about FOUR hours. I can't remember the last time Paul and I had such a nice day.

I think I've only just recovered today, but it's been worth every nap since.

Many thanks to the family and friends who pitched in to make it happen.

A brief respite

For about 44 hours this weekend, Paul and I will be childless. We are celebrating this relatively unusual state of affairs by getting the hay out of town.

We've picked a lazy little antebellum town a short distance away and booked the best room in the best inn in town. We already have reservations tomorrow night at a special place with a magnificent wine list...oh, and pretty good food too.

The boys are gladly spending their weekends with their respective best friends. Backpacks already packed and ready to head out the door as soon as the school bus pulls away.

I'm hoping for energy to browse the antique stores and other shops within walking distance of our inn, but if not, I have my Kindle with several titles calling my name.

Most of you know, Paul and I have had the great fortune to have traveled a lot. We've been in the sands of North Africa, set our feet down -- however briefly -- in Asia on the Bosphorus, spent lazy summer breaks in cottage county in Ontario, drunk way too many piña coladas on a deserted Caribbean isle, and explored most of Europe.

But, I don't think I've ever been so excited about a trip before.

I'm still standing...sort of

I've spent the last two nights vacillating between night sweats and teeth chattering chills. I feel faint if I stand up too quickly. My eyesight isn't all that great. I feel kinda thick headed all the time. And you can start the funeral dirge for my eyelashes and eyebrows.

But, I've got stylish headwear and earrings and I'm still standing...if I remember to get up slowly.

And, according to my friend, Andrea, my hats and earrings are "way better" than this.

Opinions on second opinions

You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist.   -- Frederich Nietzsche 

Know that, in life, there rarely is a clear cut right answer. Do your due diligence, make your choice, and confidently move forward.  -- Letter to Allen and Boyce, Beth Mullis Moore

A good friend back in France just reminded me that I previously used this Nietzsche quote as a postscript to my emails. After spending the better part of the last week researching the major cancer centers in the United States, I really needed a reminder that there are many paths, no one necessarily superior to the other.

The second quote is just a reminder to practice what I preach.

I'm working on that due diligence part right now. I can't tell you how many curriculum vitae I've read from how many faculty members at so many medical centers. MD Anderson, Memorial Sloan Kettering, Dana Farber, the Mayo Clinic, the Cleveland Clinic...the list goes on and on. I'm ready to get to the part to "confidently move forward."  BUT THERE IS NO CLEAR CUT RIGHT ANSWER!

Damn my big mouth and damn Frederick Nietzsche and damn a life that can't be black and white.

Before I sign off with my frustrations dangling out there, I feel like I need to offer up some thoughts about my current gynecological oncologist. He's an excellent physician and well trained surgeon. I've agreed with every recommendation for treatment he's made this far, and what he's discussed with me about possible next steps makes sense. Yes, perhaps his musing out loud that I am an enigma wasn't the best choice of doctor-patient communication, but, then again, I've never really felt like I fit the mold in many aspects of my life. In some form or fashion, I've been an enigma for a very long time.

Like one of my Facebook friends recently commented, getting a second opinion about now could be a comfort, if only to confirm that I am, indeed, an enigma.

Apparently, I'm an enigma

"Your results are just bizarre."

"You are quite the enigma." I think I'll make that my new yoga mantra. (Ohm...I am quite the enigma...ohm.)

Wow, doc. Could you make me feel anymore...special? These are actual comments my oncologist made yesterday when I saw him during my chemo session. Did he ever kill my Benedryl buzz.

My original endometrial tumor was a grade 1, which means very a slow growing, non-aggressive, typically non-metastasizing tumor. My pelvic lymph nodes were all negative. Everybody seems confused as to how I ended up with cancerous endometrial tissue in my lungs. Hence, I'm an enigma. I don't find that particularly comforting. It makes me think a piece of my story is missing.

(Perhaps it's time for a second opinion. Not that I don't think my doctor is experienced and good, I just think it might be time to go to a larger cancer center that may have seen other cases like mine. However, my Google searching was not particularly fruitful last night.)

This is my oncologist's plan for when I finish my sixth chemo session in three weeks. I'll have a PET scan about 2 1/2 weeks after that last chemo. Then I'll schedule a consult with a thoracic surgeon who is experienced with pulmonary surgery and cancer. He'll render an opinion about a possible surgery to remove any remaining nodes in my lungs, if my current chemo regimen hasn't removed them already.

If the thoracic surgeon doesn't think surgery helpful, then I would likely start another round of chemo, probably with different drugs.

To sum it all up, a lot is up in the air, depending on how my next PET scan (probably March 6th) looks. If all lung nodules are gone (and there's no new cancer), then I'm in remission. If nodules are still present, I'll either have surgery or start a new round of chemo...or who knows, maybe both.

Deep breath. One day at a time.

Five sessions of six done and dusted

I had a good day at chemo, but I'm really, really tired. I also met with my oncologist during chemo. I'll update you tomorrow. We talked some about what's next after the sixth session coming up in three weeks.

I'm doing it my way

Last month, I went to the American Cancer Society's Look Good, Feel Better seminar and was practically chastised for not wearing my wig...and false eyelashes. Hey, I've got ten eyelashes left on each eye. What do I need with falsies? And for me, wearing a wig just doesn't feel honest...nor is it very comfortable, even with the Coolmax wig liner they insisted I get.

I'm a hat and scarf girl. I'd rather accessorize than hide. Besides, it's kinda wonderful how nice complete strangers are when I go out in public with my scarf on my head and my peach ribbon on my lapel. It's perhaps the only perk of going through chemo. I'm not about to forgo that opportunity. The guy at the Burger King drive-thru even told me today that I was looking very glam, in my black cloche hat with my grandmother's brooch accentuating the brim. (Yes, I know I shouldn't be eating fast food, but at least it was chicken...not a burger, no fries, and nothing but water to drink. So, hush up.)

I've been reading other cancer blogs lately...lots of breast, prostate, and lung cancer out there. I haven't yet found another gynecological cancer blog. What I have found is a lot of anthropomorphizing of cancer, as if it was some sentient being determined to colonize the human race. A devil to be exorcised. Please. Cancer is biology. Terribly unfortunate biology, but biology nonetheless.

Today, a friend asked me if I was angry at my cancer. No, I'm really not. I'm angry that my life has been derailed. I'm angry to think that my children might have to grow up without me, that my husband might have to be a single parent. I'm angry that stage IV cancer means there is no cure, just a hope for remission, a very long remission. I'm angry I'll be a cancer patient for the rest of my life. I'm angry with my situation but, no, I'm not angry at misprogrammed cells in my body.

I don't believe that my getting cancer is part of some larger plan, some life lesson to be learned or test to be passed. However, I do believe I can learn from this experience.

I don't believe that merely being positive will influence my outcome...but I do think being resolved will. I am resolved to be that patient that just wont let anything drop until I get a satisfactory answer. I am resolved to exorcise my stress with activity, connecting with others, meditation and getting good rest. I am resolved to keep my children's lives as normal as possible for as long as possible. I am resolved to accept every emotion I feel during this journey. I am resolved to keep reading and writing.

I'm doing this thing my way.

Could be worse

Most people think life sucks, and then you die. Not me. I beg to differ. I think life sucks, then you get cancer, then your dog dies, your wife leaves you, the cancer goes into remission, you get a new dog, you get remarried, you owe ten million dollars in medical bills but you work hard for thirty-five years and you pay it back and then -- one day -- you have a massive stroke, your whole right side is paralyzed, you have to limp along the streets and speak out of the left side of your mouth and drool but you go into rehabilitation and regain the power to walk and the power to talk and then -- one day -- you step off a curb at Sixty-seventh Street, and BANG you get hit by a city bus and then you die. Maybe.               - Denis Leary

For some, Denis Leary may be a bit of an acquired taste, but I think he's hilarious.

The details of my diagnosis...a cautionary tale

Warning: I'm going to discuss some of the graphic details of how I came to be diagnosed with endometrial cancer. If you're a premenopausal woman, I especially encourage you to read this entry. If you get squeamish with discussions of menstrual cycles and women's reproductive anatomy, perhaps you should skip this one.


For at least a year before my initial diagnosis, I had symptoms of endometrial cancer. No, I didn't ignore them. The symptoms were simply the same any perimenopausal woman could have, periods of extreme heavy menstrual bleeding. We're talking a day so heavy each period that I'd have to change super plus tampons and heavy flow overnight-sized pads -- yes I was using them both at the same time -- every 45 minutes to an hour. Most days like that I wouldn't leave the house if I could manage it.

In November 2011, I talked to my gynecologist about the heavy bleeding, which he agreed was a classic perimenopausal symptom. We talked about possible treatments to ease or get rid of the heavy bleeding so I wouldn't feel captive in my own home once a month. He gave me some literature to take home and consider my options.

Four months later, I return for a consult to get the process underway for a uterine ablation, a treatment that involves basically cauterizing the blood vessels of the endometrium, either with laser or hot water. Fifty-percent of women receiving this procedure never have menstrual bleeding again. Most of the remaining fifty percent have very light bleeding until menopause takes over. Sounded good to me.

My gynecologist wanted to schedule me for a hysterosonogram before performing the ablation so that he could get a good look at the anatomy of the inside of my uterus. During a hysterosonogram, the cervix is dilated to allow passage of a small catheter into the uterus, while ultrasound is used to guide the catheter and record the results. Once the catheter is correctly positioned, the doctor injects through it a saline solution that inflates the uterus and allows its internal anatomy to be seen.

Immediately, my gynecologist saw something suspicious, a 5-cm long ribbon-like tumor growing out of the lower part of my endometrium, the inner lining of the uterus. On the spot, he decided to take a biopsy of the growth to send out for pathological study.

The pathology report took a week to come back, and it indicated the tissue examined had hyperplasia with atypia, basically cell overgrowth with suspicious looking cell nuclei. The report also ominously said it could not rule out malignancy. So, the pathologist couldn't say it was cancer...but he couldn't say it wasn't either. My gynecologist immediately refers me to a gynecological oncologist, and I am fast on my path to becoming an official cancer patient.

Forty-seven year-old women aren't supposed to get endometrial cancer, much less stage IV. Though endometrial cancer is the third most diagnosed cancer in women, it's largely considered a curable cancer because it mostly presents in its early stages in post menopausal women, in whom vaginal bleeding is obviously abnormal and in whom surgery possibly combined with pelvic radiation results in a cure.

This wasn't the case for me. In retrospect, I was probably already in stage IV when my gynecologist first found the tumor inside my uterus. No one can say how long that tumor had been growing there, its symptoms being masked by my monthly menstrual cycles.

I've since discovered that I had several risk factors for endometrial cancer, factors I'd never heard about or was not warned of within the context of cancer development.

1. I was overweight. Fat cells act as extra storage tanks for estrogen, and endometrial cancer is quite frequently associated with elevated levels of estrogen. Testing on my tumors reveal that they are both estrogen- and progesterone-receptor positive. The estrogen in my fat cells fed my cancer. I've read research that shows being overweight makes women ten times more likely to develop endometrial cancer.

2. I had polycystic ovarian syndrome. This caused me to have highly irregular menstrual cycles with long periods of unopposed estrogen. As discussed above, too much estrogen feeds tumors.

3. I started having menstrual periods before the age of 12. Again, it's that increased exposure to estrogen that's the culprit.

Other risk factors that I didn't have but are important to know about include:

1. Never having been pregnant.

2. Never having taken birth control pills.

3. Having taken Tamoxifen for the treatment of breast cancer.

Finding published research about the treatment of stage IV endometrial cancer is very difficult. There are two reasons that I've come across. Primarily, most women are diagnosed in stage I or stage II and are essentially cured by their treatment. Second, women with stage IV endometrial cancer aren't typically around very long after being diagnosed, so it seems rather difficult to get them enrolled in clinical trials long enough to collect much helpful data. Sigh.

My hope is that since I'm much younger than the average woman with endometrial cancer and since I have no other health issues that I'll be the statistical outlier. That's how I'm focusing my energy.

So, dear readers, I encourage all of you premenopausal (and especially perimenopausal) women who have an increased menstrual flow and who meet some of the risk factors listed above to insist your gynecologist investigates further. A hysterosonogram is not a big deal...and who knows how different my prognosis might be today if I had known to ask for one a year earlier.

I have cancer, hear me roar

Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.' -Mary Anne Radmacher

People have sometimes used the word courageous to describe how I've handled my cancer diagnosis. But, that just doesn't seem right. Choosing to deliver a baby without an epidural is courageous. Jumping in front of an armed intruder is courageous. Standing up to injustice is courageous.

Courage is the stuff of epic adventures, where the heroine chooses a particular course of action that thrusts her into the belly of the dragon. I don't recall ever making a choice to take on this beast. The battle was thrust upon me, like I suddenly woke up from the dream that was my life and found myself in the middle of the Battle of Hastings. All I'm trying to do is find a little high ground so I can catch my breath.

Today, I went grocery shopping by myself for the first time in a couple of months. It just couldn't wait any longer, and I had to do it. I was fine for the first half of the shopping trip, then the bottom fell out of my energy...right in the frozen food aisle of Publix. I had to truly dig deep to finish and make it to the car. Was that courage? Deciding that I wasn't going to break down and cry out of exhaustion next to the frozen pizzas?

So, courage to grocery shop? I don't know about that. Certainly, it's not the roaring courage of a lion. But perhaps, just perhaps, there is something courageous about quietly confronting my limitations, knowing that there always will be time to rest and tomorrow the sun will rise again.

Pajama day

(Pamela S., I blame you for this entry. You said you wanted more 'ramblings'.)

It's about 5:30 pm, and I'm still in my pajamas. There was nothing required of me today, and I willingly complied. For the first few nights immediately after chemo, I don't sleep so well because I tend to catnap my way through the day, either from just the sheer fatigue or a pill for nausea, or both. And then I want to catnap my way through the next day because I didn't sleep well the night before. It usually straightens itself out by the weekend.

It's hard not to feel guilty telling the boys good bye in the morning while I'm in my robe and slippers, and it's even worse when they come home and find me in the same state. I know they understand, but I still feel bad.

I've built a nest around the reclining chair in the man cave (family room -- or the old playroom, as some of you might remember). At my hands are my iPad (of course), my liter-sized Camelbak water bottle (gotta flush out those toxins), my cell phone and the house phone, television controls if Paul isn't here, my favorite black pashmina wrap, a blanket, various magazines and catalogues, copies of medical reports, greeting cards, hand lotion, reading glasses, and lip balm. I can pretty much survive the day right here.

My crowning achievement today was opening a shipping box containing a replacement pair of my favorite shoes. The box had been unopened since before Christmas. I almost kept the tattered original pair for...I don't know...backup, but saner heads prevailed. My visiting dear friend Andrea strongly advocated pitching them in a manner only a close friend can. I complied.

I spent the remainder of my day surfing the net, catnapping, talking to an old neighbor on the phone, and watching a movie about Hemingway. I forget the name, but it starred Clive Owen and Nicole Kidman.

It's close to 6:30 now, and Paul just arrived home, after picking up six different prescriptions for me from the Walgreens. Let's see what he comes up with for dinner.

Typical chemo day

The alarm went off at 6 am, plenty of time to pad downstairs in my bathrobe and slippers for a leisurely cup of coffee. Paul and I plop down in front of the tv while he catches up on SportsCenter and I check my blog. For an hour, we have the house to ourselves before the boys wake up and begin their morning routine.

At 7:30, Paul and I pull out of the garage, feeling a little guilty about leaving the boys to get ready for the bus on their own. They're 12 now, I remind myself. They can do this. We have trustworthy neighbors on all sides of us who would jump in at a moment's notice, and the boys are proud of the freedom and trust we give them. Still, they're my babies, and I like being able to look out my dining room window and watch them climb on the big yellow school bus.

My appointment for chemo isn't until 9:00, but the unpredictability of Atlanta traffic necessitates leaving lots of extra time for delays, detours, and general driver silliness. We pull in the parking garage at St. Joseph's a few minutes before 9:00, having traveled a grand total of only 18 miles from our house. I get to the chemo suite with plenty of time to claim my favorite chair.

Today, my nurse Miss Alice, a 63 year-old veteran who likes to call us "her girls", gives me a big hug and asks about my Christmas. She liked hers, but she's glad it's over. Miss Alice, quite uncharacteristically, has trouble accessing my port and has to stick me twice. I easily forgive her because I know the drugs she's about to infuse into me will make me not care.

I've got my teal bracelet, my teal socks with the nonskid surface -- good for the multitude of treks to the bathroom over the course of the day, thanks saline -- and my teal and peach prayer beads on. Later, I'll hook up my iPhone and listen to my guided imagery meditations. Right now Paul and I are just enjoying our time together, even if he's on his laptop and I'm on my iPad. It's nice to be comfortable.


It's about 10:30 now, and I'm still getting my pre-meds. Two different ones for nausea, a steroid, Pepsid, and ten times the over-the-counter dose of Benedryl, plus a huge bag of saline. It will be interesting to see how my writing holds up once these all sink in.

My eyesight is starting to get a little fuzzy now, and I'm feeling rather mellow. Just a bit more Benedryl, then the Taxol begins. 


OK,Taxol, it's time to get to work. Search. Kill. Destroy. Your compatriot, Carbo, will be along in a few hours to relieve you. Now it's time to stumble to the bathroom - my infusion machine is portable so it goes everywhere with me. The drowsies are here. 


Sometime around noon, Paul did my bidding and went to Alon's, a fabulous market/bakery that has a store nearby. Their original in-town location is in the Virginia-Highlands section of Atlanta, where I used to live before I married and moved to the 'burbs. They started out as a little bakery making bread and pastries. Then they added sandwiches, and it took off from there. Now, they're a gourmet food shop, with wines and cheeses from around the world, ready made gourmet delicacies, and still, wonderful sandwiches. Paul bought my favorite, the Tuscany...a heavenly concoction of roasted eggplant (aubergine for you Brits and French), sundried tomatoes, arugula, and goat cheese. I just finished mine and writing about it now makes me crave another one. OK, maybe that's the steroids talking. 

I tried chatting on Facebook with a friend while Paul was gone, but that was a disaster. I kept falling asleep while I waited for her to reply. Epic fail. 

Also, I tried taking a picture of myself in my infusion chair, but I looked so stoned I decided it best not to share it on the Internet. You never know when I might run for public office.


We're down to the last few minutes now, and one of the nursing assistants handed me my schedule for the next cycle. When I reviewed it, it was nonsense to me. I asked Miss Alice to come over, except I called her Miss Mary by mistake, and explained that something was wrong. The conversation went something like this:

Me: I usually have a Day 10 blood draw, where is that?
Her: It's right here, sweetheart. See?
Me: I also always have a draw on the Friday before chemo.
Her: (oh-so-kind and oh-so-patient) Yes, honey, it's there. And then your next chemo is on the 29th.

Suddenly, I realized my schedule looked exactly like the schedules for my three previous treatment cycles. Exactly. My brain was just trying to read it in ancient Arameic at first. Another day, I'll write about the phenomenon of chemo brain. Hopefully, cancer cells don't like stupid.


An uneventful drive home, and here I am back in my La-Z-Boy, trying to have a coherent conversation with the boys about their days at school. I need to give up and go to bed.

And finally some encouragement

Just got off the phone with my oncologist...yes, it's after 10 pm. The PET scan shows the lung nodules have stabilized, meaning they haven't gotten any larger...but they haven't gotten any smaller either. And, there's no new cancer. I'll continue with the same chemo drugs, carbo/taxol, for the remaining three cycles.

I know that it's good the cancer seems to be responding, but I'll admit, I was hoping for more dramatic results. I don't want stable cancer. I want NO cancer.

Thanks for all of you rallying tonight. Really gave me a boost.

So, tomorrow I'll behave myself and direct that chemo to begin destroying those nodules.

And wait some more

It's after 7:00 pm here in Atlanta, and I still know nothing of my PET scan nor what chemo drugs I'll have tomorrow. It's possible that my oncologist will still call, but I'm not holding my breath. To say that I'm frustrated and angry is an understatement.

I plan to show up for chemo at 9:00 am, as usual, but they will not stick one needle in me until I speak to my oncologist personally. I'll hold the entire chemo suite hostage. I'll start a demonstration. I'll go on hunger strike. I'll unionize the patients. I'm going Norma Rae on their ass.

And so we wait

When I called my oncologist's office this morning to ask about my PET scan results, I found out he's still on vacation until Monday. No news until then.

Pivotal PET scan

They have us packed in like sardines at the radiology imaging waiting room. This will be my third PET scan here and the most nerve wracking. I went into the previous two with great naïveté. This time, the stakes are high.

I'm halfway through the carbo/taxol chemo, so it's time to see if it's working to shrink or get rid of the three small nodules of metastasized endometrial cancer in my lungs. If there are improvements, we'll continue the course with the remaining three sessions of carbo/taxol. If not, then it's back to ground zero and time to try something else.

What's worse is I know the technician will know exactly what's going on as soon as the scan is over, but she can't tell me. I'll have to wait until at least tomorrow to give my doctor time to sift through the papers on his desk to my results. I think I'll take an extra dose of Xanax tonight before bed.

Of course it's no fun that I haven't had anything to eat since midnight, I'm so tired it's all I could do not to fall asleep during the drive over, and I forgot the form with my oncologist's instructions, as well as my insurance card. And, I'll be radioactive until 6:00pm tonight from the contrast solution they inject in me one hour before the scan.

I just want a nap.