Saturday, March 9, 2013

Spring in my step...maybe?

Once a month, I set everything in my world to the side.  For one day, I am not a mom or a daughter, not a teacher, athlete, coach or friend. For that one day, I am a patient.  For that one day, I have the monthly reminder that I live with cancer.

Since there are so few ocular oncologists, I make the trek to NYC which usually turns into a full day 8 hour trip when it is said and done.  I have done it now so often, I don't even bat an eyelash at it (no pun intended). When I started going to Manhattan, everything was so new and overwhelming.  I had to not only navigate the new world of cancer but also planes, trains and automobiles...and usually with dilated pupils!  But, true to my nature, I have figured it out and this upstate country girl has flourished in this new adventure...and here I am to share it.

  Today starts at the train station.  Despite Poughkeepsie's CRAZY roads (who was the civil engineer who designed them??), it has one of the most beautiful train stations with a gorgeous view of the Hudson and of course, the Mid Hudson Bridge.

And it despite how ever many times I have been there...and any time of the year, it still takes my breath away.  There is nothing grander than Grand Central Station.  It still remains one of my favorite places in NYC.  After spending years in Europe, it is as close to touching my international heart as I can presently get.  I love hearing all the different languages and the food, oh the food!  Just take a look!

Of course, the food and Grand Central Station are not the purpose of my trip.  They are part of the adventure!  So, from Grand's off to my second home!

Every month, we find something new...a year ago, I was involved in a clinical drug trial for Lucentis and all of us in this trial had wonderful results.  In fact, many of us had a restoration of vision.  Unfortunately, the FDA did not continue this trial and I, along with others, were forced back onto a less effective and significantly cheaper drug called Avastin. The trouble with Avastin is that over time, it loses its effectiveness.  For now, it is working but I believe we are on borrowed time.  For the last 2 months, we have watched tiny aneurysms develop in my retina, which clearly indicates the dosage of Avastin is on it's last legs.  I have one more step up in dosage...after that, options are significantly limited.  Luckily, I was towards the back of the pack when it came to transitioning back to Avastin from Lucentis so there are a couple of patients ahead of me in this adventure, acting as guinea pigs and helping us determine the best course of action.  For now, I am adjust to the change in my vision...and secretly mourn not having Lucentis as a treatment option. 

Look deep into my eye(s)...ok, maybe not!

For now...things are stable and we will keep them there as long as we can.  Every six months, I have a thorough exam which includes ultrasound, angiogram and more indepth scans, usually involving both eyes. Today was fairly scan, a couple photos of my tumor, measurement of the pressure of my eye, vision test, injections- one on the surface of my eye to numb it and the second,  Avastin, into my eye.  After about 2 hours, I am free to go back into the city life.  Surprisingly was a quiet day in the office.  Most people have avoided coming in today due to the incoming snow storm.  NYC was predicted to have a dusting to 2 inches of snow by morning...where I live, 6-8 inches.  I am not scared...bring it on!  I live with cancer!

One of the best part of being part of Dr. Finger's office family is that everyone knows me. They always ask about school, my children and races I am scheduled to run.  And I know about them...I know whose son was married the same place I vacation.  I know about recent engagements, marriages and the birth of babies. I know the hopes of the new doctors as we share stories and what countries the visiting doctors are from.  I know the office's recommendations for lunch, candy and cultural events.  And I know they have my back.  I know they are vested in my care. I know this one day out of the month is worth it to me!

So, as I head back north, the snow starts falling.  It looks to be the last snow fall of the winter season or so we hope.  Spring is right around the corner and all of us in the northeast are ready to have some green grass and flowers back in our lives.  I reach this part of the year and always reflect upon how grateful I am for the new year and the fresh start. to home for another month. Green light and smooth sailing for just a little while longer.  

Here comes the snow!


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