Wednesday, February 8, 2012

Red Lipstick

Monday evening, I met Geralyn Lucas, author of "Why I Wore Lipstick to My Mastectomy."  She was diagnosed with cancer at age 27 and is funny and engaging.  She asked if I would wear red lipstick to the luncheon the next day.  I am more of an earth tone, blend into the crowd kind of gal, but I said, "sure!"  She offered to lend me some, but I said I had red lipstick.  The next morning I realized I  had none, so I stopped at the drug store and bought some.  Sure enough, at the end of her speech to several hundred people, Geralyn called my name and asked if I was wearing red lipstick, and if so, to come on stage.  So I stood on stage because I was wearing red lipstick!  And because I was alive!

Bear Creek and Beyond


Egg Nog!

These were the sounds of my friends and me announcing obstacles along the Bear Creek course to one another.  We sang Little Bunny Foo Foo. Trail running is so different from running on the streets.  You cannot shuffle, you cannot lose your focus.  If you do, you’re going down!  And when I found myself tripping over a little log, I stretched my arms out wide, "SUPERMAN!"  But, alas, it was Underdog who fell to the ground in a THUMP.  

But up I popped again. The ten-mile run was an out and back, and around mile 4.5 I thought, “what were you thinking?”  I didn’t know how I could go on.  But I dragged myself to the turnaround, where the volunteers said, "oh, you must be the gigglers!"  Apparently, we had gotten a reputation.  This buoyed me up, and the rest of the run was so fun!

I am ever so thankful for all my friends who joined me on this trail run.  Many had never run on trails before, especially not in a race.  Many went outside their comfort zone to support me, to celebrate my successful surgery and what appeared to be ongoing successful radiation treatments.

At the finish, I got a bear!  The race director, Barry Kreisa (Barry the Teddy Bear) arranged to have the guy who makes prizes for the winners make a prize for me too.  Take a look at my bear prize.   He’s so cute!

I LOVED THIS RACE.  As a result, I decided to keep running on trails.  In January, Holly and I ran the Willis River Wilderness Race--a 35K (or 21 mile) run in the woods.  We got lost twice, ran through creeks, got stuck in muddy fields.  It was a hoot!  We decided to keep going.

So, as I mentioned, here is my schedule for this spring:

  •  March 3rd.  Seneca Creek Greenway "Marathon."  The race director suggests that the Marathon is more than 26.2 miles, but instead "more like 31 miles." All on trails with creek crossings, hills, etc.
  • March 18th.  Shamrock Half Marathon.  This is a more traditional road race.
  • April 28th.  Promise Land 50K.  A 31+ mile race in the mountains that involves 8,000 feet of ascent and 8,000 of corresponding descent in the mountains in the western part of Virginia.
  • June 2nd.  Fifty MILE TRAIL RACE.  North Face Challenge.  And we signed up for a 10K in the same race series on June 3rd.  Just for good measure.
  • June 24th.  The Philadelphia Triathlon--my race for Liberty from Cancer, Making Cancer a Sprint!  It's on my Dad's Birthday, and I am racing in his honor!

Tattoos, Tanning Booths, Sunscreen and Zingers


My husband hates tattoos.  They are so popular now that he admonished me not to long ago “Never get a tattoo!”  Now I have two!  As a breast cancer patient receiving radiation, I got a tattoo on either side of my breast, to help the technicians make sure the radiation is going to the same place each time.

Getting the tattoos was hilarious.  I went to Massey Cancer Center downtown and put on a dressing gown.  A nurse came and got me.

“Are you going to give me my tattoos?”  I asked.

“Yes, I give you prison tattoos!” she said in a thick Russian accent.  I trembled.

“Prison tattoo?  I was hoping you would do this,” I said, showing her a picture of an “Ironman” tattoo that many of my friends have gotten.  It is called an “M-dot.”

She looked at it admiringly.  “Pretty!” she said.  I was hopeful.

“NO!  You get prison tattoo!”  she concluded.

And so I got the standard issue prison tattoo.  No colors, no liveliness.  And symbolizing something a lot harder, I’ve got to tell you, than an Ironman.

Tanning Booths

Radiation isn’t nearly as bad as chemo, though.  I was told the main side effects would be sunburn and fatigue.  Both side effects would get worse and worse during my six weeks of treatment, and subside a few weeks afterward.  I told the doctor about my fitness level, and he said this would mean I wouldn’t have any trouble with the fatigue getting in the way of my work and day-to-day living.  “But you will have a crummy run one day,” Dr. Arthur said, “and you will blame me.”  He is a marathoner himself, so he knew how to make me laugh.  “I’ll do that!” I promised.

I got my radiation treatments every weekday at 6 pm at the Stony Point location of Massey Cancer Center.  Dr. Arthur admonished me that I could not miss a single appointment.  “Don’t be telling me you’re busy at work and you can’t get here.” he said.  I think he’s met lawyers before!  I did manage to get to all my appointments on time, often telling folks that I had to go to my tanning booth appointments.

Going to radiation is, in some ways, like going to the gym.  Or the tanning booth. I go through the main entrance and sign in with the same guard every night. Then I say hi to the receptionist in radiation oncology and she buzzes me inside.  From there I go to a dressing room and change, and then I sit and wait my turn, with ladies who become my friends over our weeks together. A technician gets me and I go into a gigantic room with a huge machine in the middle. There is a second technician helps me lie on a table. There is a block under my butt so I don't slide down, and then I lift my arm over my head and rest it on some padded armrests. After they get me all adjusted they step out of the room. A big screen thing begins to lift up, slowly, tracing from left to right, in an arc, across my chest. As it goes I can feel the progression as tingles that move along. It is really strange feeling. The treatment only lasts a few minutes.


After a few weeks, my breast became bright pink,.  The scar under my arm where they took the sample lymph nodes was the worst because my bra rubbed there.  OUCH.  After a month, everything began to peel.  OWWW  Worst sunburn EVER.  And I’ve had some doozies.  I still remember wearning zinc oxide and a t-shirt and staying inside mid-day during our vacations in Florida when I was a little girl.  By contrast, my olive-complexioned sister could run around outside all day.

A friend of mine asked me why I didn’t wear sunscreen.  I repeated this to the nurse, who was HORRIFIED.  Apparently last summer, a patient did wear sunscreen, despite repeated warnings not to use anything on your skin before treatment.  She told the nurse, “well, I put on sunscreen right before coming because I didn’t want to burn.”  Oh dear.  You see, sunscreen does block something or other, and they actually want to torture us with this radiation.  This is war, and it’s a war we want to win.  The radiation is designed to kill the cancer cells, and unfortunately there’s collateral damage, like in any war.  I surely didn’t want to spend an hour every day getting shot with nothing but blanks!

Fatigue was the other expected side effect.  The ladies who sat with me each evening were experiencing fatigue.  I was tired during Thanksgiving weekend, but decided in the end that the turkey did it.  I kept running and cycling during radiation.  I also swam.  Sometimes I wondered if people noticed my “glow.”  My shoulder hurt quite a bit during this time because I used it so little right after surgery.


So, fatigue was nothing.  Zingers, on the other hand, were terrible.  I was warned that I might be standing there, minding my own business, when I would be struck with something that felt like a lightening bolt in my breast.  I felt these--it was as though a nerve was hit errantly.  This, they said, was a side effect of radiation.  “They only last thirty seconds or a minute,” they promised.

Not so.  Turns out if you run for hours and experience a zinger mid-run, it will not go away for hours!  I took to wearing four bras again, and taking four ibuprofen.  Sometimes I would still be shot with a zinger.  I asked Dr. Arthur what people had done in the past.  He confessed that he’d never had a patient who trained as much as I did.  If you ask the average woman doing her thirty minutes three days a week exercises what she’d do if she were struck with a pain in her breast that felt like a lightening bolt, I think she’d say she would get off the treadmill and go have a glass of wine.  But I kept at it.  In the end I found the winning combination was four bras and four ibuprofen.

Post-Surgery and Humpty Dumpty PR

I asked the doctor whether I could go back to work the day after my surgery.  He said, “absolutely not!  You will be loopy!  I don’t think you will want to go back to work for a full week.”

 “When can I run again?” I asked.  “Not for three or four weeks,” he said.

I thought these predictions were a bit crazy before the surgery.  In the recovery room, the nurse told me that the anesthesia would keep the pain away till evening, when she admonished me to take the prescribed oxycondin (yes, the addictive stuff) before nightfall “whether you think you need it or not.  Otherwise, the anesthesia will wear off in the middle of the night and you’ll wake up screaming in pain!”

That sounded pretty awful.  I imagined myself morphing into Edvard Munch’s famous painting.  It was not pretty.  So I took the drug.  I don’t think drugs work on me the same way as normal people.  Before long, I was totally hopped up.  Instead of spending all night sleeping, I spent all night wide awake and thinking crazy thoughts.  It was terrible.  All in all, I wished I’d taken advil!

And just as the doctor suggested, I did not go back to work all week.  I was totally wiped out.  I always get daily emails suggesting a workout, and respond to them by posting my actual workout.  I had not bothered to get this adjusted due to the surgery.  So I would get something like “run three miles” and I would write "went to the beauty parlor, which wiped me out!"   Getting my hair done on Wednesday after surgery was exhausting!

But what about the doctor’s prediction that I would not run for three weeks?  I thought this was crazy too.  But one week after surgery, I started “fitness walking” again.  Jiggle, jiggle, OWWWW!  Running would be painful, I realized.  But I missed running!

Two weeks and five days after surgery, my friend Holly said she was going to run 9 miles.  I joined her, after taking four ibuprofen and wearing four bras.  No way was there any jiggling possible. In fact, it was a bit hard to breath with all that compression going on.  But it was a  glorious run!  The following weekend was the Richmond half marathon.  I had assumed I could not run a half marathon only four weeks after breast cancer surgery.  But the day before the race, I said, "what the heck!"

I dressed as the white rabbit from Alice in Wonderland and kept telling everyone I was late. The best part was when little kids in strollers noticed me. One set of twins kept yelling, "Bunny! Daddy, Bunny!" Daddy was looking at his iPhone and never got to see Bunny. Poor Daddy, letting the good things in life fly by!

Truth be told, I was Humpty Dumpty, if the King’s Horses and King’s Men had done a better job!  I was put together again.  No Personal Record (PR), but I got a HUMPTY DUMPTY PR--fastest half marathon I’ve done four weeks after a surgery!

Tuesday, February 7, 2012

My Genomic Score

After surgery, I learned that my "margins were clear" and that there was no evidence of cancer in my lymph nodes.  Excellent news.  In the old days, the doctors still wouldn't know whether to recommend chemotherapy.  Chemotherapy is a horrible thing--it can cause all sorts of medical problems, and even death.  And of course, the hair loss.  But at the same time, if can prevent a recurrence of cancer.  But until recently, deciding on chemotherapy or not when there was no indication of metastasis was a crap shoot.

Now, they have a test called the oncotype dx.  They send off your tissue after surgery to do this test.  It must be enormously expensive because they actually called me to get me to authorize it.  They said, "your insurance company has approved the expenditure.  You have met your deductible, so you will not have a co-pay.  Your doctor recommends the test.  Would you like it?"  umm, yes!  And then I had to wait, and wait, and wait.

On this test, a high score is over 31, and any doctor would recommend chemo.  Under 18 and the doctors do not recommend chemo.  In between, once again, it's a crap shoot.  You have to make a difficult decision whether to undergo chemo or not.  The doctor does not know what to tell you. As I waited for my results, I wondered about my score.

"I know what my score will be," I told Steve.

"You think it's in the middle. Because you cannot stand uncertainty and that would be uncertain."

So true.  I was absolutely convinced that my test results would fall into the grey zone.  And then I would opt for chemo.

Despite this decision, I was on pins and needles waiting for the results.  I called the lab, which indicated that the  doctor would have them by Friday.  I called the office and tried to change my appointment to Friday, but they said he isn't in the office then, nor on Mondays.  My blood started to boil.  Where the heck was he, playing golf?  Then I remembered that on Mondays and Fridays he does something other than golf.  Like, um, surgeries?  Oh, yeah.  I was all ready to be mad as a wet hen, but I guess a surgeon has got to do surgeries....

But, miraculously, the results were back Thursday. My score is 9!  HOORAY! Far under 18.  This means the risk of recurrence in 10 years if very low. The average rate of distant recurrence (meaning recurrence of cancer in your lungs, liver, bones or brain) for someone like me is only 7%. So chemotherapy is not recommended.  Radiation yes, Chemo no.  This is good--chemo can kill you and makes your hair fall out.  Radiation causes sunburn.

I am a redhead who grew up in Alabama.  I am an expert on sunburns.

My Health Score

At work every year, we march down to the break room, where a nurse weighs us, measures us, and gives us a flu shot. Then we answer a series of questions about our health, diet and exercise. We receive a “health score” in various categories, of: Excellent, Good, Needs Improvement or Houston, we have a Problem!

With my Type A personality, I strive to receive an “Excellent” score on each topic. This year, as you know, I have cancer. Nevertheless, I got weighed and measured and answered all the questions. To the question “Do you have cancer,” I checked “yes.” What was my ranking on the cancer question? Good. HA HA HA. What do you have to do to get a score of “Houston, we have a Problem”? Apparently, you have to smoke, drink to excess, eat Ding Dongs and exercise only if somebody’s chasing you with a carving knife! Or maybe all those, plus actually have cancer.

When I told my husband this story, he said, “you answered the question incorrectly.” Say, what? “You do not have cancer. You had cancer. The doctor removed it.”

Surgery: No Hamburgers

On my day of surgery, I was told to fast. Thank goodness I was scheduled for an early surgery because I was starving!  I told the nurses to bring me a hamburger when I came to.  I ask people to bring me hamburgers during races and they don't believe me.  The nurses didn't believe me either.  Sigh.

I was given some sort of painkiller by a needle that just about killed me and then they knocked me out cold.  Next thing I knew, I was coming too and it was over.  But no hamburger.  Truth be told, I was okay with the crackers and ginger ale.  I told Steve I actually thought I might vomit.  I am never nauseated.  What a horrible feeling.  I feel for all of you and thank God for my iron stomach.

Patience in the DMV

I was very happy with my treatment at Massey Cancer Center, but sometimes it was a study in patience.  

First, they  ask me all kinds of questions such as "Can you walk a block without running out of breath? Do you do street drugs?" And, for some reason, they repeatedly ask me, "have you fallen down today?" 

There is a room at MCV that looks like a cramped version of the DMV. As I waited, I realized they use the same call out numbers randomly with no pattern scheme that was perfected by the DMV. The room was filled with the same cast of characters you'd find at the DMV, including the woman wearing all purple, including an eye-catching wide-rimmed purple hat with a plume.

 The man next to me was carrying a book covered in something that announced it was a book banned in 47 countries. He looked at me wondering if I knew what it was. I knew it was not Huckleberry Finn. He offered me something from his suitcase of religious tracts as he was called back to see the doctors.

Picasso and Scarves

How do you reconcile these two seemingly contradictory instructions:

1. Do raise your right arm any higher than your head.

2. Wear a sports bra with the maximum compression?

I guess I need to buy one with a fastener because the pullover sessions are tough. I made Steve help me when I first got back from the surgery and was all bandaged up. But now the bandages are gone, yet I am not quite ready to test the sickness and health thing. So I have been wearing two crummy bras instead of one good one.

I am hoping the Frankenstein monster look is temporary. I recall quite clearly my surgeon looking at my chest as though he were an artist looking at a nude model and declaring that the surgery would result in something "cosmetically pleasing.". After I sent my blog out, many people sang Dr Bear's praises. I was convinced I had found, through happenstance, quite an artist. A Rembrandt. I should have asked one more question, I think. It appears I got a Picasso.

And there is a hidden scar under my arm too. Hidden, but it appears to have exacerbated that fat roll between my boob and arm. I should have asked for that to be liposuctioned while he was in there. Insurance would not have noticed. I think that would be the only way to get it gone. I am convinced that just before Karen Carpenter died she noticed such a fat roll and it sent her over the edge. Bless her heart.

I always have to read about things a lot before I attempt them. I hope I do not need chemo, but I might, so I am reading. I read something suggesting that you should decide whether to wear a wig or a scarf or a bare head, or some combination depending on the circumstances. Like a scarf to work and a bare head to worship. I think that was an example for Buddhists, maybe. I have never bought one of those expensive Hermes scarves. They seem so extravagant. Have you seen those pictures of Queen Noor in her collection? Sheer beauty. But then I wonder if the TSA would assume I was a terrorist and do a pat down? Demand that I remove it? He he, serve them right!

So now I have been thinking about this scarf so much that I want one, even if I don't have to undergo chemo. Yes, yes!
I wrote this not long after my surgery, and I did get a scarf. A gorgeous one from my friend Lilo of Lilo Collections.