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.