SURVIVING YEAR ONE

That month between diagnosis and surgery was a whirlwind.  And then the recovery!  I had just started a new job just before I received the word.  Really, like two (2) weeks on the job, but my new employer was wonderful and gave me the time off.  I ended up being out of work for about six (6) weeks total.  I came home with a drain that my husband had to drain about every three (3) hours until it was removed.  It had a really long drain tube in my back, so every time I would lay back it hurt like you know what.  Also  alot of tightness/numbness below my breasts and along my right side.  That tightness exist still.  I walked around my house and outside as they wanted me to, trying to expand my lung back.

As I think about it now, it seems strange to me that I had surgery before ever seeing an oncologist. My Pulmonologist referred me to a local oncologist that has a great reputation.  I did specifically tell my Pulmonologist that I would like to go to a specialist for lung cancer.  He said there really was not a specialist, but that the Doctor he was sending me too saw a lot of lung cancer, by virtue that he was referring his patients there.

I won't say the Oncologist's real name, but I will say that I did not get warm fuzzies.  Oh, he did the right thing, leaning into  me when he talked, etc., but he talked really fast and I was in and out of his office in ten (10) minutes.  I felt as if he thought that on the scale of cancer patients, I had surgery, cancer was removed and I did not need much of his time.  I'm not certain that was his thought, but ones' perception is their reality, so that was my REALITY.  To sum up my visit, he suggested that I take Tarceva, a targeted therapy that works with that EGFR mutation that I have.  He thought this would be good in case there were any remaining cancer cells that were so small that they were not yet detectable.  Tarceva, is a great drug, to help one live with lung cancer, but it does have symptoms  for most who take it.(diarrhea and a bad rash).  The other issue with Tarceva is that lung cancer is known to become resistant to it over time.  I had several questions in my mind.  Without any detectable cancer, how would we know if it was actually working?  How would we know if it was not working with no detectable cancer?  What if down the road the cancer did come back and I had already used up my Tarceva card?

Being an avid reader, I was reading everything that I could about cancer survival.  My favorite author at the time was Kris Carr and her book Crazy Sexy Cancer.  One thing she said that hit my is that the statistics show that those who go outside of their local area for the medical care tended to have higher survival rates.  Having not warmed up to Doctor Hurry Up And Send Me On My Way and still convinced that there had to actually be Oncologist that specialized in lung cancer, I began the search for my Doctor.  Thanks Google!  I found Dr. Jennifer Garst with Duke University Health System.  She does research on lung cancer and only sees lung cancer patients.  I had found my specialist.  I called immediately and made an appointment for my second opinion.

Dr. Garst was everything that Dr. Hurry Up And Send Me On My Way was not.  She spent about 45 minutes with me.  In my appointment, she went line by line through my biopsy and lab results and explained it all.  She felt that Tarceva was not good for me at the time.  She also was more aggressive in her plan for my follow-up scans, plus she immediately wanted me to have an MRI of my brain, as often lung cancer metastasis to the brain.  Dr. Garst is passionate about lung cancer and is a great advocate .  She is the Chair for the North Carolina Lung Cancer Initiative, a non-profit that supports lung cancer research and education.  I left my appointment feeling really secure in my choice of her as my Oncologist.

So my first year,  I tried to change my diet some, but mainly began to incorporate juicing into my morning routine.  God bless my husband for his tolerance, as I experimented with recipes.  For about the first six (6) months we kept a journal of each recipe and our comments on it.

I also began to exercise, which has never been a favorite past time. I initially started at the gym just walking on the treadmill and riding a bicycle.  After a couple of months, I started the C25K progam. The idea is that you use an app on your phone that supposedly takes you from being a couch potato to running a 5K in 30 minutes.  The program is for nine (9) weeks.   I never got up to running 5K, but I was running 15 out of the 30 minutes, which for me I thought was AWESOME!

I volunteered to be on the race committee for Race For Breath, a 5K walk/run held on November 1st at the Oceanfront in Virginia Beach.  The race was to benefit Free To Breathe, another non-profit who raises money for research and has a mission to "Double Lung Cancer Survival By 2022".  My husband and nephew, Kenley, walked the race with me and my Sister, Theresa, came and spent the night with us.  It was a fun time for a good cause.

THE DAY OF RECKONING...BETTER KNOWN AS SURGERY DAY

In less that 30 days, I was diagnosed with lung cancer, consulted with Surgeons and was scheduled for surgery...a lobectomy to be exact.   On November 21, 2013, Dr. Dipin Gupta removed the lower right lobe of my lung.  The type of lung cancer was adenocarcinoma staged at 1B.

I vaguely remember being rolled into the surgery room and seeing that big robotic machine, but that was fleeting.  When I awoke, I was in the ICU unit where my stay was relatively uneventful.  I was on pain meds and that managed my pain well, although the drain tube made it very uncomfortable to lay down or back.  I believe it was the day following surgery that a physical therapist stopped by.  He determined that I was doing so well that I did not need his services.  I was already walking around the floor of the hospital as they wanted me to do. 

The only hiccup in my stay was when a nurse insisted that I take codeine.  As she said "just a small dose".  I have always asked not to be given anything codeine based, as many years ago I took some and became horribly sick.  Well guess what??? Some things really never change.  The evening prior to my discharge, I was given the medication and within an hour I was so ill, I had lost all interest in eating.  By the next morning, I was throwing up.  By that afternoon, still sick, my husband, insisted that I be given something IV to stop the throwing up.  Thanks to him, this worked well and by 7:00 p.m. I was free to go home.

For the record, my tumor was sent off for gene sequencing and it came back with an EGFR mutation.  This is supposed to be great news, as it means that there could be targeted therapies available for me.
Be Brave,
Lynne

THE CONTENDER

I had a number of Thoracic Surgeons on the list given me by Dr. VJ.  It is hard to go wrong with world renowned Dr. David Jones of Sloan Kettering Cancer Center on the list but there also were Doctors from Sentara Norfolk General, the Medical College of Virginia, University of Virginia Medical School and other various surgeons.
Not having ever known someone with lung cancer, getting a referral seemed out of the question, so where else does one turn?  I know!  Google, of course.  I really became overwhelmed and decided the best that I could do was to narrow my list down to two surgeons.  One would use Video Assisted Thoracic Surgery (VATS) and the other would use the DaVinci Robotic method, the two monikers for thoracic surgery these days.  As an aside, I have watched too many of those car commercials that use robots and frankly, I just did not like the idea on one working on my both parts, particularly an organ as important as a lung!  While my husband would surely have put me on the airplane to New York, straight away, I was not sure that I wanted to go that far.  I felt that it might be best to have my surgery done close to home and therefore have the support of my local family and friends.

Dr. Joseph Newton from Sentara was in number one position, my early runner, if you will. Sentara Healthcare is the local group of hospitals, so a sort of comfort in the familiar and in thinking that I would have family nearby.  In my Google search I came across these transcripts from a live webinar: http://www.or-live.com/transcripts/2007/seh_1958_657.pdf.  Twelve pages of mumbo jumbo to a novice like me, yet it left me feeling assured that Dr. Newton was an expert at VATS and the Surgeon for me!

BUT...big but here!  I surely needed more than just one consultation.  My research led me to Dr. Dipin Gupta. Dr. Gupta was with Cardiothoracic Surgical Associates located in Richmond, VA; however as of this writing he is with MedStar Union Memorial Hospital in Baltimore, MD.  Dr. Gupta was the DaVinci Robot guru and yes, he thought that robot "sexy"!  While I found that just a little disturbing, one could not help but warm up to Dr. Gupta.  I left his office knowing that he was who I wanted to do my surgery.

My husband never fully gave up hope on Dr. Jones ( a UVA alum, just like my Husband), had conversations with him and also sent him my records to review.  I  believe that Dr. Jones felt that I had a pretty straightforward diagnosis and surgery and felt that I was in good hands here locally.  With his blessing, my Doctor of choice was Dr. Gupta.
I feel as if I made a great decision, as between Dr. Gupta and his associates, I believe that I had the best of care.

Be Brave,
Lynne
 
 
 

 

TRICK OR TREAT

October 31, 2013 , the day of my diagnosis.  I arrive at my appointment alone, but in blows my Husband to be with me.  Dr. VJ, my extremely tall Indian pulmonologist, strides into the exam room, with a white coat woman in tow.  What?  Who is this woman and why does she have paperwork in her hand.  This cannot be good!  If something were not wrong with me then why would he have someone with him?   Excuse me.  I'm sorry.  What did you say?  I'm certain that I misunderstood something!  Did you just say the C word????  In a second my world starts spinning out of control.

My Dr. proceeds to tell me that my needle biopsy showed adenocarcinoma, a non small cell lung cancer, a small nodule and stage Ib.  Lucky, lucky, lucky that they found it so early.  Need lobectomy right away, as in less than 30 days.  Here is a list of Surgeons for you to choose from. Options include a Robot, VATS (video assisted thoracic surgery) and the old fashioned way of just cutting you open.  PET scan needed.  Oh this white coated woman is Wendy, your Navigator.  And out the door you go.  That is what I heard! TRICK OR TREAT! Today, the trick is on me!

The truth is that Dr. VJ and Wendy actually spent a fair amount of time with Hubby and me.  I was thankful for my husband and that at least I had someone besides myself listening to the details that were given.

But out the door I go and thus begins my life with big C.

THE BACK STORY

What exactly is a back story anyway?  A back story is a a story that leads up to the main event or plot, often used in fiction or literature.  While my recent life events may sometimes feel very surreal, and while I do wish they were a dream, they are all too real.
I was born in 1960 and grew up as a middle child, in a typical middle class family, with 2 Sisters and 1 Brother.

I majored in Speech Pathology and thought I wanted to work with autistic children, but never did.  I came close to majoring in either History or Journalism.  Actually either of these would have been a better choice for me, as I still have a strong interest in old people, places, things and I am great at proofreading!  At 53, I've been a window screen maker, waitress, sales clerk, assistant manager, accounting manager, large animal veterinary office clerk, real estate broker, a move-in coordinator at a Continuing Care Retirement Community and my most recent gig is as a covenants enforcement officer for a homeowners association.  While many of my careers were short lived, I worked for 13 years as an accounting clerk, 7 years at the veterinary clinic and 13 years in real estate.

I was married for 23 years to a man 14 years older than me.  Divorced!  That one word that speaks volumes.  While certainly some good in every one and every situation, for the most part, my marriage sucked.  I now am married to an amazing man.  We have been together for 10 years and married for 6.  Yes, it is true!  Good things do come to those that wait.

I've had horses, sheep and a menagerie of other animals to include my current kitty, Holly.  I love cheese, good wine and I am a self proclaimed foodie.  I like to read, spend far to much time on Facebook, watch Reality and HGTV,  and have amassed a large selection of craft supplies and yarn, although not really very accomplished at any craft.  I like the beach, antiquing, and somehow have this passion for trying to revive near dead plants.
I'm Libra born, so have that whole yin and yang thing going on.

My Grandmother died from a stroke when I was 6 years old, my Father died from a heart attack when I was 8 and my Mother, still alive, had a stroke several years ago.  I have two sisters, one had a stroke at age 45 and the other has had rheumatoid arthritis for years.  My brother passed away at age 62 from a stroke.  Yep, a pretty crappy family medical history.
I fell a few months back, hurt my shoulder, went for an x-ray and image my surprise when I got a call that the radiologist had seen a spot on my lung.   I NEVER saw that coming!
So there you have it, my back story.  My beginning, my end and my rebirth to a life I never imagined.

Be Brave,
Lynne