Reason to Believe

“Still I look to find a reason to believe.”  Tim Hardin

The events of the last few days—no, the last few months—have been horrendous.  From the attacks in Paris and Brussels to the slaughter in Orlando and the bombing of Baghdad, it seems that every time we turn on the TV, or open up a newspaper, we are assaulted with more violence, more bloodshed, more hatred and more death.  At a time when we as scientists are on the brink of a new era in technology—a visit to Mars, cars without drivers, a “moonshot” to cure cancer—we as the human race seem to be backsliding into a new and darker Dark Age.  For me, the dregs of misery came when I read the transcript of Diamond Reynold’s video of the shooting death of her fiancé Philando Castile in front of her four year old daughter, on the front page of the New York Times right alongside of the story of five Dallas policeman being shot and killed in cold blood.   I could not watch the videos of either event.

Today at work one of my physicists gave me a gift.  He is Romanian and recently returned to the land of his birth.  He brought me back a photograph of the monastery at Voronet, in the form of a refrigerator magnet.  He said that in Romania, there has been a rebirth of spiritualism and faith.  The photograph is beautiful, and I later learned that this monastery is also called the Sistine Chapel of the East.  From Wikipedia, legend tells us that the monastery was built by Stephen the Great, who in a moment of crisis in his battle against the Ottoman Turks, came to Daniel the Hermit in his skete and asked for advice.  Daniel told him not to surrender the battle, but that if he won, he must build a monastery dedicated to St. George.  Stephen the Great won the battle and in 1488, dedicated the monastery with these words:

I, Voivode Stephen, by the Grace of God Ruler of Moldavia, son of Bogdan, have started to have the monastery of Voroneț built to the glory of the holy and well-known St George, the great and victorious martyr, in 6996 in May on 26, on one day of Monday, after the Pentecost and I had it finished the same year, in September, 1488.

In these best of times, these worst of times, we all need to find a reason to believe.  I believe that ALL lives matter—black lives, white lives, police lives, Syrian lives, children’s lives—all of us need to relinquish the fear and hatred that has taken over our lives and our human decency.  Like St. George, we need to reaffirm our faith, whether it be in God, or in love, or in kindness, or in our fellow human beings.   We need to do it now.   We have met our nemesis and he is us. Time is short and we have a dragon to slay.

When Cancer Comes To Call

A patient story tonight, from Jackie:

 

It was one of those days.  I had been to the gynecologist the week prior because I somehow knew the sporadic bleeding which I had experienced was NOT a simple Urinary Tract Infection for which I had been treated three times.  My doctor did the scrapings and biopsies and had me run down the hall for an ultrasound.  I’d had lots of ultrasounds during my pregnancies – especially with my twins -  but this one wasn’t fun.  There was no cute baby to smile at.  This time it was a transvaginal ultrasound which involved the insertion of a rather large tube into “that place” to look at the uterus.  “My what a big wand you have” I joked with the sonographer.  She didn’t smile.  That’s when I got a bit nervous.

Of course my doctor put a positive spin on everything – prior to the biopsy results.  He said it was probably just an over thickening of the uterus, Hyperplasia.  So I decided to wait until there was something solid to review and went on about my life.  I had a dental appointment a few days later.  My dentist announced I needed a root canal immediately and sent me to a nearby Oral Surgeon.  As I was pulling up to the Oral Surgeon’s office my cell phone rang.  It was my gynecologist.  “Well, there is a malignancy….”.  The words hung in the air.  We had a brief conversation – darn, I thought – I had researched  Hyperplasia thoroughly and knew all the right questions to ask.  I felt like I had studied for a test and then the test changed.   He said I needed to contact a special Gynecological Oncology surgeon and that his office would tell me what’s next.  So I called and left a message with that doctor but said I couldn’t talk for a couple of hours because I was just about to go in to have a root canal.  One thing I will say about those specialists’ offices; they run like a well oiled machine.  As I walked back to my car 2 hours later there was a message on my cell phone.  It was Jay, the Office Manager for the Gynecological surgeon I needed to see.  He was calling to schedule my appointment.  He paused and said “Good luck with the root canal. Sounds like you are having a great day”.   And so it went.

My life was forever changed.  May brought the diagnosis.   June brought the scheduling of the hysterectomy.  July 1 was the surgery.  July 10 came the pathology report.  Not what we had hoped for– the “once and done” hysterectomy revealed some naughty cells lurking within the uterus that have a tendency to “jump” into other areas.  Chemo or Radiation? My case was submitted to the Austin Gynecological Oncology Tumor Board for review as recommended by my Surgeon.  I was overwhelmed.  I didn’t know what I didn’t know.  As is often the case when you do get the “C” diagnosis; you are thrown into a blender of emotions but when the dust settles the appetite for knowledge takes over.  And so it was decided that radiation was the protocol. After I healed from surgery, radiation began.

So here’s the thing:  it wasn’t that horrible.  For anyone who has been through tough times, worked hard and experienced inconvenience or sadness – you are mentally strong and prepared for this challenge.  It is definitely a Mind Game.  I decided to fight and endure and not to whine and whimper.  For 6 weeks my life revolved around daily visits to the Oncology Center.  The treatment wasn’t bad.  The hardest part was drinking 40 ounces of water prior to treatment.  The side effects clicked in about 3 weeks in; lower GI issues.  But oh well, diarrhea is not the end of the world.  My pubic hair fell out which I found fascinating. I met wonderful friends in the waiting room.  The therapists and nurses and doctors were wonderful.  My neighbors and family rallied and emotions ran high.  Food and flowers poured in.   My sweet neighbor who had just finished two years of breast cancer diagnosis, surgery, chemo, radiation, reconstruction – I was at her door daily for her battle.  Now, she was at mine.  Life sifts down to the basics of priorities: Faith and Family and Friends.

I finished my radiation on September 15 and got to Ring the Bell which is special to all cancer patients because it means YOU ARE DONE.   My sweet family and a few friends showed up.  Tears flowed.  My husband pushed through the group to shake the hand of my Radiation Oncologist and choked “Thank you for helping my wife”.  I was ready to start my new healthy life.

Check-ups will continue for a few years and I will see both my Surgeon and Radiation Oncologist often. That’s okay.  My Surgeon is cute (I think he is almost the same age as my oldest son) and my Radiation Oncologist is an incredible mother of four who never seems hurried or distracted and makes me feel like I am THE most important patient in her practice.  I feel so blessed to have been in such capable hands.

I feel wonderful.   Celebrating my December birthday was more special this year.  Welcoming the New Year signaled almost a palpable relief to make a fresh start.  I take nothing for granted and try hard to live in the moment.  Ever the planner, this has been my most challenging goal.

For Christmas this year my daughter gave me a beautiful silver charm.  On the front it says “Faith”.  She told me to turn it over.  On the back was engraved 9-15-2014.  My final day of radiation.  It has been the most horrible of years, but it has been the most wonderful of years.  When Cancer comes to call you rise up and fight the good fight.  And then, you go on.

Superstition, Karma and Faith

I have always been a mildly superstitious person.  With a casual air, I will walk around rather than under an open ladder and I never wear opals since they are not my birthstone.  I will happily pet a purring black cat then shiver when it runs across my path, and when I break a mirror my heart sinks.  I remember watching the Rachel Ray show one day and saw her toss a pinch of salt over her left shoulder after spilling some of it—and I thought, “I am not alone.” I tend to look at everyday occurrences as omens, good or bad.  And in my effort to impose some sense of justice in this crazy world, I believe in karma.  I try to stock up on the good stuff.

Today my 88 year old father had a left total hip replacement.  I had tried to talk him out of it for months, since he had only just had his aortic valve replaced in March.  He has been living independently again, and has actually been seeing a wonderful woman at the senior community where he lives.  With my mother’s dementia, he had not realized how much he had missed having someone to talk to, to confide in.  My sister and I were against him going in for elective surgery.  But as the months rolled on, he became more limited, and for the last month it has been obvious that he was in constant pain, and that surgery was inevitable.  My husband drove him to the hospital this morning, and stayed there while I worked today.  He called me at 3:30 to say that the surgery had gone very well, and had been done via an anterior approach under epidural anesthesia. Ninety minutes, start to finish, and Dad was awake, oriented and moving all four extremities.

I left work at 5:30 to go over to the hospital.  I stopped for gas before getting on the freeway, and as I stood at the pump, ready to disengage, I saw a tiny black dog dart across the busy street, collar and tags on with a six foot leash trailing behind him.  He ran quickly across the parking lot and I reflexively locked my car, glanced over my shoulder to see if there was an owner in pursuit, and seeing none, I took off after the dog, walking slowly, non-threatening, calling “Puppy, puppy, puppy” in my sweetest voice, the one I rarely use.  I was quickly joined by a man who had pulled into the station in an extended cab pick-up truck, his entire family in the car.  He jumped out of his car, said, “I saw the dog, I will help” and came with me.

The little dog, clearly terrified, ran to the far end of the lot where two teenaged girls saw what was going on and unfortunately, immediately gave chase down an alleyway between a garage and a guitar shop. A man covered in mechanic’s grease joined the rescue efforts, adding to the chaos of concern.  And then the tiny dog ran right into a side street, directly into the path of an oncoming car.  By the time we reached the lifeless body, the woman who had been driving the car was sitting in the middle of the road, sobbing uncontrollably, and putting herself in imminent danger. The man with me picked up the dog, a well-cared for black and tan Chihuahua, still sporting his collar and lead, and we checked him.  His eyes were open but he was gone. The small entourage carried him across the street to an open veterinary clinic, so that the owner could be notified, and would not have to search the empty streets tonight.  If you are a dog loving reader, and have never found yourself in that sad situation, you have been very fortunate.

I got to the hospital with a sense of impending doom, and was quite surprised to see Dad sitting up in bed, entertaining his nurse who was improbably named Evangeline.  She was catering to his every need; he was in fine spirits and his pain was well controlled.  I know he isn’t out of the woods yet, but I was relieved and grateful.  Instead of superstition, I should have had faith—faith in the doctors and nurses taking care of Dad, faith in the human beings who rushed to try to help that little black dog, and faith that there is a purpose and meaning in the events of the day. But somewhere a family is grieving tonight, and I am wondering why.

How Do I Know This is Working?

This is the question I get asked the most:  “So Doc, how do I know that this is working?”  Sometimes my patients come to me with visible or palpable disease—something on the skin that they can see fading away, an enlarged lymph node in the neck that shrinks visibly during treatment, a lump or a bump that disappears, much to the gratification of both patient and doctor.  But most of the time, this is not the case.  Most of the time, the tumors are either deep inside, and not seen or felt, or the tumor has been removed, and we radiation oncologists are called in to do “clean up” work after the surgeon.  As disturbing as it might be to a patient, most of the time, we don’t actually know that “it”, meaning the radiation, is working.

I’m old enough to know that life is not black or white, right or wrong, on or off.  But still, as an optimist,  I  am a person who likes absolutes—I have always believed that if you play by the rules, you deserve to win.  I dot all of my  “I’s” and I cross my “T’s”.  I was the kid who NEVER colored outside the lines in my coloring book, and now that I am a grown up, everything should be in place:  my patients will attest to the fact that I am likely to rearrange the furniture in the consultation room if the cleaning people have set anything off kilter. I don’t see this as obsessive-compulsive—I see it as maintaining order in a disordered world.  I like to see justice served, the plates cleared off after dinner, and I do not eat dessert first.   In my linear world, the beginning is the consultation, the ending is the cure. The daily radiation treatments are the means to that end.  Why should my patients expect less?

So what do I tell my patients who ask tentatively, half way through treatment,  “Is it working?” when they have the invisible tumors, the ones deep inside, or the ones where the surgeon took most of it and we’re seeking out and destroying those microscopic stragglers?  One of my teachers once said, meaning to be humorous,  “Radiation works best when there is no disease!” Even the patients with the palpable masses that melted away—how can we be sure that every last malignant cell is gone?   At the end of treatment, my patients want to be told that their disease has been vanquished and will never come back.  Some doctors will oblige.  They will say  “We got it all”.  Or they say, “You are cancer free.”  This is despite the fact that there is not a single diagnostic test on the planet that can support that claim.

We oncologists prefer to use the word “remission.”  Or “complete response.”  As in, “You are in remission.”  Or “You have had a complete clinical and radiographic  response to treatment.”   We would love to say, “Your cancer is cured,”  because that is ever so much more satisfying than stating the truth, which is that we do not and cannot know for sure.   Sometimes, somethings, some days—you just have to take it on faith and try to move on.  Even if you are not a believer.

Here is what I tell my patients. I tell them that first the side effects will fade from their bodies and their memories.  And then  there will come a day when they will actually miss the camaraderie and support that they got from their chemotherapy and radiation teams. I tell them that the sun will rise and the sun will set, and they will bravely put one foot in front of the other.  And one day, before they know it, they will wake up and stretch and smile and they will have forgotten, just in that moment,  that they ever had cancer.  And that’s when they will know, it worked.