Be careful what you wish for…

Seems strange to say that so far I have had the vacation of my dreams.  Here I am, 46 years old and counting, and I have never in my life been off the East Coast of the United States. If it had not been for my husband’s transfer to Pennsylvania back in ’97, I bet I would have never left Upstate New York. Don’t get me wrong, I have absolutely no regrets about my life. I was perfectly content living in NY and I found it impossible to even entertain thoughts of leaving the state.  As for the rest of my life, I made the conscious choice to leave the workforce to raise our kids and when the time came I made another conscious choice to homeschool.

After receiving the diagnosis of metastatic neuroendocrine carcinoma of the liver, I began to seriously evaluate my life and now those moments with my kids are a deeply cherished memory.

I can’t lie and say that I have not had second thoughts along the way; I freely admit to pressing my face against the window, children screaming like manics behind me, and harboring a serious case of what we homeschool moms call “school bus envy.” After receiving the diagnosis of metastatic neuroendocrine carcinoma of the liver, I began to seriously evaluate my life and now those moments with my kids are a deeply cherished memory.  I am so thankful for those years I had with them because my future is incredibly uncertain.  Again, I have no regrets, but now I am hoping to begin to live just a bit and enjoy some much needed time with my husband; time that I have to admit just was not there amid the crazy years of homeschooling, military TDYs and deployments, and the every day nonsense that consumes the lives of families everywhere.

These were the thoughts running through my mind when my Tricare case manager recommended we travel down to New Orleans to been seen at the Neuroendocrine Tumor Program at Ochsner.  All I could think about was the chance to get away, finally say I have been off the East Coast, and tour a city that has been on my bucket list since I read Tennessee Williams’ A Streetcar Named Desire my senior year of high school.  Heck, I have an entire board on my Pinterest dedicated to the amazing architecture of New Orleans which I scroll through dreamily on many an occasion.  This was a chance to make what has always been just a dream a reality, so how could I possibly say no? And thus began this incredible journey to Louisiana.

I should have realized that there would be some issues with embarking on this trip, and the first issue cropped up when my husband and I were discussing the mode of transportation in which to take to get down here.  Since I have never been off the East Coast, I wanted to be able to travel through the states and see the sights on the way down and my husband, being the world traveler that he is, wanted to hop on a plane, tour a couple of airport terminals, and be in New Orleans in time for dinner.  Not me. No sir, no way. This was my chance to say I have seen just a small portion of the US and I was not to be deterred; so, needless to say, I won and we set out with our 37′ travel trailer in tow on a 17 hour trek to Louisiana.  And, despite hubby’s grumbling,  I enjoyed every second this beautiful trip!

Once we arrived in New Orleans, however, the real reason for the trip materialized; I spent all day on Wednesday at the clinic at Ochsner being injected full of radioactive tracers, stuck with IV needles, poked, prodded, and stuffed into an MRI machine.  The testing took a better part of a week to complete, but it left us with a free weekend to play tourist and realize the dream.  Anyone who knows me really well knows that I am a fanatic when it comes to graveyards; I absolutely love them, the older and creepier the better.  In this New Orleans does not fail to disappoint, it is seriously a city of the dead. In fact, this aspect of the city greets visitors almost immediately.

The testing took a better part of a week to complete, but it left us with a free weekend to play tourist and realize the dream.

What makes these cemeteries unique is the above ground burial (much like many cemeteries in Europe) due to the threat of flooding. It really would not be overly pleasant to watch coffins floating down the street, much like what has happened during the recent flooding in Baton Rouge. These totally awesome cemeteries HAD to be the first stop on my list of places of see! The problem with touring many of the cemeteries here in New Orleans is that they are only accessible through a tour that lasts roughly two hours.  The reason for this is that these old cemeteries are being brutally vandalized, so to cut down on the destruction they are kept under lock and key, and some cemeteries are closed to the public completely.  Due to my health issues, a two hour tour in the heat and humidity of Louisiana is an impossibility, so we hit up Lafayette cemetery no 1 in the Garden District, and it surely did not disappoint. I took roughly 80 photos while we were there and here is a sampling of some of the best:

Playing tourist with a chronic health condition certainly comes with a price, and I have paid dearly for all the walking in the heat.  This tour alone cost me a whole day stuck in the trailer on the couch, but it was seriously worth it!

After resting, recovering, and enduring more needle sticks, radioactive injections, and scans galore, we did hit the French Quarter. We enjoyed shopping, browsing, admiring the architecture, and, my favorite past-time, browsing in the bookshops.

Let me tell you, New Orleans is anything but lacking when it comes to bookshops.  They offer used bookstores with treasures around every corner, kitschy bookshops that cater to the voodoo culture of New Orleans, and newer bookshops that play on the rich literary history of the area.

And let me tell you, New Orleans is anything but lacking when it comes to bookshops. They offer used bookstores with treasures around every corner, kitschy bookshops that cater to the voodoo culture of New Orleans, and newer bookshops that play on the rich literary history of the area. At Beckham’s Bookshop I was able to browse shelves, dig through piles of books, and even stop to pet Juniper, the bookstore cat, as well as pick up treasures like Winston Churchill’s History of the English Speaking Peoples.  At Faulkner House Books I was able to stand in the very study where Mr. Faulkner wrote his first book, Soldiers Pay, and actually touch several first editions of his work.  Here I also made an astonishing discovery, a collection of Samuel Beckett’s poetry, something I never knew existed (and, needless to say, just had to purchase).  And, finally, at the Librarie Bookshop, I found a facsimile copy of Mrs. Beeton’s Book of Household Management. Heaven, pure heaven!

This trip, however, has not been all about me and I have allowed my husband to indulge in some of his more cherished vices.  As we were driving out of the French Quarter after a day of bookshop browsing, we happened upon a small cigar shop. Of course we put that on the to do list for the next day.  I honestly have to admit that this little shop became my favorite stop so far, even when pitted against Faulkner House Books. The atmosphere is so relaxing, the associates incredibly friendly, and it is enjoyable to watch them roll the cigars.  My husband, of course, was in absolute heaven as he sat in an overstuffed chair and enjoyed a fresh, handrolled cigar.  He is even going home with three boxes of these amazing cigars to keep the memories alive.  For me, I loved soaking in the factory atmosphere, the smell of the burning cigars, the breeze from the street, and watching all the people walking by.

This will definitely be on our list of places to revisit and hubby made sure to get their shipping information, just in case he runs low on cigars before we make our next trek into New Orleans.

However, all this fun has come to a rather abrupt halt as the reality of why we came down was made fully known to us at yesterday’s consultation with the neuroendocrine specialists of Ochsner.  Over a year ago after a capsule endoscopy, we discovered that my small bowel is being overrun by roughly 38 tumors.  While these have not been an issue in the beginning, over the course of the last few months the pain has become intolerable, eating almost impossible, and I am spending the vast majority of my days sleeping off the pain.  Before we came down, my doctor had ordered a CT and ultrasound to check my gallbladder and it was determined that it was loaded down with stones.

However, all this fun has come to a rather abrupt halt as the reality of why we came down was made fully known to us at yesterday’s consultation with the neuroendocrine specialists of Ochsner.

It was sincerely my only hope that they would remove the gallbladder and the pain would miraculously disappear.  This is where I have had my hopes and, honestly, despite all other issues, was the only thing on my mind as we walked into the appointment.  Well, after sitting in the hospital for almost 8 hours and talking with three different specialists, it has been decided that I will undergo an extensive surgery to remove not only the gallbladder, but roughly 1/2 of the large bowel, a significant portion of the small bowel, and as many of the remaining tumors in my liver as they can get to safely.  Not exactly what I was expecting or hoping for to be brutally honest.

So, it is safe to say that our role as tourists here in the “Big Easy” has come to an abrupt halt.  I am now holding fast in the trailer to recoup my energies and get ready for what will be the most invasive surgery I have ever had.  The procedure will take between 8-14 hours, there will be a 3 day recovery in the ICU, and, after release from ICU, a 3-4 day stay on the oncology floor.  I am excited, terrified, and holding on to the hope that after all is said and done that I might be able to resume a semi-normal life.  At least I hope that I can enjoy eating again.  It is going to be a bit before I am back up and blogging again, but when I come back I am hoping to post some really gruesome post-surgery pictures and share the great news that all went well.

Thank you all and I cannot wait to get back to blogging!!!

~Alicia

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