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Sunday, May 15, 2011

May 3 - May 8, Not the Best of Luck

So I arrive at the Baylor Plano PET scan facility on Tuesday, May 3 and am injected with radioactive sugar to find out where all my cancer is.  An hour later, still haven't gone back to get scanned, yet I'm the first patient of the day.  What gives?  Well, Dr. Wu, the machine broke.  What?  Yes, the machine broke.  Not what I wanted to hear.  Abner, the technician decides to go ahead and try and scan me even though the monitor is not showing anything.

After an hour in the scanner, I'm off to work, taking care to avoid small children and pregnant women (I am after all "glowing").

At work, again have a fun time with all my friends I have been missing.  They in turn are the best people I could possibly work with.  Another non-dramatic day concludes and I return to Baylor Plano hoping that the technician has salvaged my scan.  He manages to do so but I can tell from the tone of his voice that something is not right.

By 3 pm, I have the disc in my hands and am personally carrying it to the radiology reading room.  The good radiologist has tried for the past 30-40 minutes to pull up my scan, only to realize that it has to be physically brought from the PET scanner by disc to the reading room.  He loads up the file and my heart sinks back to the depths I reached after first being diagnosed with the cancer.

The cancer is everywhere:  My right lower lobe, multiple right lung lymph nodes, my liver, my left hip, 3 spots on my spine, and of all places, my shoulders.  The last one was a bit of a weird location.  I am devastated.  I was sure it was just my right lung, the nodes, and the liver spot that showed up on the CT scan.  I wasn't expecting to see so much bony involvement.  I have no symptoms!  How can this be possible!

I make the call to my partners and my friends:  "The cancer is everywhere."  I sink back into depression and anxiety and begin to think about what the future might hold for me.  Before leaving Baylor Plano, I drop by the OR to see my friends there, whom I haven't seen since being diagnosed.  At the front desk, I see a blur of people moving in the office behind the glass, but don't see anyone at the desk.  Oh well, just bad luck that no one was there.  Then I see a small figure emerge from around the door and she comes up to me and gives me a hug:  "We miss you Dr. Wu" she manages to say through her tears.  I miss them too.

As I am walking out of the OR area with my wife, a service technician approaches us from behind and says to us, "I don't know what you did to those girls in the office, but they're all behind the door crying." My depression wanes again; I am loved and feel the support of the people around me.

Over the next two days, denial and hopes for a scanning mistake give way to acceptance and a new desire to find all available options for my treatment, from traditional western medicine, to herbal and holistic mixes.  What have I got to lose?  Try everything.  Emily makes an appointment to go to MD Anderson to see an oncologist recommended by my partner Dr. Brannon Marlowe.  I have a renewed energy.  I talk to a person Helen Bouldin whose husband was cured of acute myelogenous leukemia with nontraditional medicine and I am intrigued and want to give it a try.  I meet a 20+ year survivor of not one, not two, but FIVE malignant cancers, including lung cancer of a type much worse than my own.  He emphasizes to me that a positive attitude, faith in the Almighty, and a tenacity to do whatever it takes to survive are NOT optional.  After 20 years, he is working full time as the owner of a furniture distributor.  He is the good friend of another special friend mine, Ronald Duperroir.

The ever sensitive Ron, found out about my scan and could not let me go without speaking to his friend with the cancers.  It was a great move.  I needed to feel, if not see, the energy of survivors who pushed the limits of their diagnoses and prognoses.  "I will not go quietly into the dark!  I will not leave without a fight!  I will not abandon my family with so much life left in me!"  I hear that in my head.  I want to scream it out loud.  I don't because I don't want to get arrested after such a great and uplifting encounter.

Thursday, May 5, rolls around and I am reinvigorated.  Work a full day and do so happily.  A 10 hour revision adult scoliosis repair.  Blood everywhere but I am in control and it feels great.  I joke with Dr. Hostin, Debbie, Amy, Dan, Eric, Mike, and Del throughout the case, and with Marcia at the end of the case.  It is a great day, until I get a strange call:  from the office of my oncologist, Jennifer, his nurse, tells me that my pathology slides containing samples of my tumor from Monday April 25, are missing.  They are gone, nowhere to be found.

Again, REALLY?  Can this really be happening?  I am dumbfounded.  Has a drunk, red leprechaun parked himself at my house?  Well, I will give them a chance to fix this.  I call the Baylor University Medical Center at Dallas, PBM Pathology practice and ask them to try in earnest to find my slides.  The lady asks me, "Dr. Wu did you take some of your slides with you?"  What?  Is it common for patients to grab a few slides here and there after emerging from deep sedation for a hyperstimulating transbronchial biopsy?  "Uh, no."

"Did Dr. Gary Erwin take a couple of them?"  Truthfully, I don't know so I call him and ask and the response is, "I have never kept a pathology slide after collecting a sample after a procedure."  Well back to square one.

On the next day, Friday, still no sign of my runaway slides.  The PBM folks now change their tune and say that perhaps the slides had no tumor in them and were discarded.  Then they say a pathologist at the downtown facility has checked them out.  Well then go retrieve them!  Before heading to UT Southwestern to meet with Joan Schiller, the chief of medical oncology an thoracic oncology guru, I have my partner look up my EGFR lab results that were supposed to be completed that day by a laboratory that PBM had sent a portion of my tumor specimen to.

On the report:  No tumor is present in the specimen provided, therefore no test done.  What?  Has the red, drunk leprechaun cloned himself and now parked himself on my head?  So PBM sends a blank to a special lab for a procedure I have to pay for that can't be done because they can't find my tumor slides?  Anger replaces positivity.  There will be hell to pay.  I have now lost two weeks of time in getting to treatment as this tumor marker is a critical determinant of treatment course.

On Friday afternoon, I meet with the extremely knowledgeable and pleasant Dr. Schiller and she provides me with a long list of options and gives me a sense of positive feeling that this is just the beginning of my life.  Lung cancer is a field of cancer whose treatments are just starting to develop as new tumor and genetic markers emerge and patterns of therapy begin to sort themselves out.  Yeah for me!  I sign up/volunteer for everything I can.  Want my DNA for future testing?  Take it.  Want me to follow up with research volunteers?  I'll do it happily.  Want me to enroll in an experimental protocol?  I'll see what frontline treatment I can take then decide after the first round.

Want my tumor specimen to test for 12 genetic markers and hopefully develop a quick and easy blood test in the future for my kids and their generation?  Well, I'd say yes except my specimens WERE LOST!  Thank you Baylor and PBM.  Not to worry says Dr. Schiller.  I will schedule you for a CT guided transthoracic biopsy with Southwestern's superior interventional radiologist, Laurie Watamull.  OK, I'm feeling a little better but not happy I have to have a second procedure to get samples.

That evening, I accept a ticket to watch the Mavericks beat the Lakers in game 3 of the 2011 NBA playoffs.  I have to leave early, but before I leave, I see my friends, Tony Whitworth and Kevin Morrill, two top neurosurgeons at Southwestern.  Drunk as skunks, I still have to let them know what is happening:  Gentlemen, I have stage IV lung cancer.  Even through the haze of their multiple alcoholic beverages, they are stunned.  I have seen the reaction before.  Just a few minutes earlier, I told an orthopedic surgeon friend of mine also at the game and he could not get over that feeling of helplessness.   He wanted to help but couldn't do what he most wanted to do, cure me of my cancer.

Not to worry, I told each and every one of them.  Leave that last part to me and my determination.  As I walk out of the Dallas American Airlines Center, a gentleman approaches me and asks me for my ticket. After all, a full half has yet to be played.  I ask him if he has a family, to which he shows me a picture of a wife and two sons.  I ask him why he isn't with them at home.  "I want to see the Mavs and Lakers live.  How much do you want for the ticket?"  My reply is nothing.  I just want you to know that you could be spending that time watching the game at home with your family and instead, you are talking to a total stranger, having missed the first half trying to get a ticket to get into the arena.  Oh and by the way, I have stage IV lung cancer, so I can and will shoot you straight from my hip.  Enjoy your life with your family!  Don't waste it blowing a big chunk of cash to see from 50 feet away, what you could see 5 feet away from your television set.  He starts to tear up and tells me if there is anything he can do for me, I just need only ask him.  I told him I would like for him to go home, but now that he has the ticket, enjoy the game, but don't go drinking afterward.  Go home to your family.

I hop a taxi to where my car was parked and the taxi driver refuses to charge me after hearing about my situation.  You see, there are good people in this world.  We just never take time to recognize and nurture them.  We idolize reality TV personalities for their gumption when we should be idolizing people who go out of their way to do the right thing for both friends and strangers.  I return home to hear my son screaming in victory as the Mavericks have salted away the Lakers.  Again, I am rejuvenated.

I spend the weekend with my family and my parents and watch my older son destroy his competition over three days of a swimming competition.  Again, how could I have missed this?

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