No drinks at this Bar .......

I will say there are many things that I love about my new job; the people; the cause; the hours; and the fact that right now I am sitting in a Starbucks in downtown Norfolk, VA working and writing a blog, and no one is the wiser.  It's the best.

Though if I had to choose a place right now that I would like to be remotely working, Norfolk may not be my first choice.  But Norfolk was not by choice.  Andrew is currently taking Day 1 of two days of the Virginia Bar exam.  He is of course nervous but after having lunch with him, he is feeling a lot more confident this time around than last.

He told me a story at lunch today that he was speaking to the people around him before the beginning of the test this morning.  He learned that 3 out of the 4 people at his table were re-taking the exam like him.  And what shocked him even more was that those other individuals missed the Bar exam score by more points than he missed.  When he told them that he only missed the cut by 3 little points, their response was 'that sucks.  You should appeal.'  Now if they knew anything about Virginia, they would know it is a state where you cannot appeal your score.  His response was 'yeah it sucked but I was only about a month out from a year long chemo/radiation treatment for bone cancer.'  Not only did he stun these people, but himself, with the fact that he really does know his stuff and if it were not for the chemo brain he had, he probably would have passed with flying colors.  I saw his mood drastically change at lunch from this morning.  He was more confident in his ability and skills...... and he looks fab in his new suit.

Tonight we are looking forward to dinner with my friend Laura.  She is already an attorney, so I hope she can put Andrew at ease for the last day of testing tomorrow.  But for now it's back to work for me.

Everyone think good thoughts for Andrew.  He needs them right now.

(The view from one of our hotel windows.  We have a corner room and 2 windows)

Raising Awareness for Rare Diseases....... from Norfolk!

Feels like home

Though I've driven these roads, entered into this garage and spun around its twists and turns more times than I care to admit, I still never get used to being at the hospital. I get a knot in the stomach every time I walk through the turn-style door and hit the lobby, with its distinct smell of ammonia and beta-dine.  My mind always wonders back to a less than pleasant time filled with worry and uncertainty.  Lucky for us, that life is a distant memory of a life once lived.

I am happy to report that today was not a visit for a doctors appointment or for a chemo treatment, but to give back to the hospital and its' staff that have given us so much.

Here are a few pictures of the new bookshelves, full of books and the new magazine rack, brimming with material.

We were able to fill two full book shelves.  One in the chemo room (above) and one in the waiting area (below).

I've heard nothing but wonderful things about how much the patients have enjoyed the magazines (and the staff too!)

Andrew and I look forward to continuing to add to the Infusion Center at Reston Hospital and aiding them in creating a home-away-from-home feel, in a not so homey place.

We want to again thank our generous friends and family members for helping us to accomplish this task.  We are continually grateful for everything you do for us and for the causes near and dear to our hearts.

Here are a few more pictures of the newly stacked shelves.

Raising Awareness for Rare Diseases......

A Career in Cancer

It's strange to say, but I spend my days surrounded by cancer, by choice.  From my job with NOCC, to movies like Dear John and My Sister's Keeper on my TV, to the ticking time bomb that sleeps in the bed beside me.  Today the world lost one of its great fighters to this deadly disease.  Wilson Holloway, a former basketball and football standout at Oklahoma Christian School and football player at Tulsa, died Wednesday from complications of Hodgkin's lymphoma. He was 22.  Though we never met him, he was an inspiration to others fighting this disease every day, and he always remembered to smile. 
http://www.newsok.com/former-ocs-tulsa-football-standout-wilson-holloway-dies/article/3541427?custom_click=lead_story_title

On a brighter note, I am very excited to report that the books that were donated by our wonderful friends and family members will be delivered to their new home tomorrow at the Reston Hospital Infusion Center.  This is what the back of my jeep looks like right now.  

In total, the hospital will be receiving a little of 600 books .....

We cannot thank everyone enough for your generous donation and we look forward to sharing more pictures once they are on their new bookshelves in the Center.

And we should also say thank you for all of the magazines that were donated as well.  They have been at the hospital since the start of the new year.

And of course, I would never deprive my local readers of pictures of  Mr. Winston, who had a full day today of an allergy shot and a trip to Petco.  He is of course exhausted because despite popular belief, he has a tough life!!

Tough Life if your definition is sleeping in late, eating cookies for breakfast, insisting everyone you meet scratches your ass, and having someone else pick up your shit!!!

Until next time .....

Raising Awareness for Rare Diseases.

Celebrating Sarcoma

There are few good things that come out of Sarcoma, but being part of an organization that allows you access to other individuals and families like yours, gives you a wonderful sense of community.  The Sarcoma Foundation of America, www.curesarcoma.org, is celebrating their 10th anniversary this year.  It's a huge milestone in the fight against the deadliest form of childhood cancer.  Let us know if you want to attend.  We would love the support and the company.

Another Save the Date Reminder:  February 28th is Rare Disease Day.  Remember to wear your yellow in support of Sarcoma.  If  you are interested in doing a work fundraiser, let me know.  An example is: pay $5 to wear jeans or yellow.

Raising Awareness for Rare Diseases ......

Cupid's Arrow

I'm curious as to how all of you out there spent Valentine's Day?  Let me paint you a quick picture of my day.  Woke up, had my coffee, shared my rice toast with Winston (like I do every morning) and worked.

 

Then I spent some time with the most wonderful dog in the world .... through he could have honestly cared less and would have rather I leave him alone to catch up on some much need beauty sleep.  News flash Winston ... those wrinkles won't go away even if you sleep more.

Then after a conference call .... which Winston proceeded to bark through because, heaven for bid, the Fed-Ex man dare ring the door bell in HIS house.  We played a rousing game of steal mommy's water bottle.

 Who me?

 Yes you!!  And after all that energy he exerted, he had to take a nap.

Me on the other hand, I went about my day, working, meeting 'Kidney Stone' Kaylan for lunch and getting a thoughtful Valentine's Day card from my parents.  And since Andrew is so anti-romantic, it was the only one I got this year.

 But that didn't stop me from trying to make dinner as fun as possible.  I made squash lasagna with pasta and ate by myself.  But not before I dropped the pasta I made for Andrew out of the strainer and down the drain to the garbage disposal and burned my hand.  It was a really long dinner, but as you can see, it looked and tasted good.

 But Andrew finally did make it home just in time for my new Dell computer to arrive from work.  Any electronic, his or not, is like Christmas morning to him.  He actually asked if he could open it, he was so excited.  And of course, it's the little things that make him happy.

But Valentine's Day is about being with the one you love.  And even though we didn't do anything romantic, we still got to spend it with our little luv bug!!

So Happy Valentine's Day to all and to all a good nite.


Raising Awareness for Rare Diseases ......

We are almost at lift-off

T minus 8 days until we pack up the car and drive to Norfolk for Andrew to take the Virginia Bar Exam. I hope he doesn't read this post since he is nervous enough. As you can imagine, I have not seen much of him since his study push began in the beginning of February. To keep himself on track, he has been spending his days at his HDP office in Reston and his nights in his new home office. The picture below is about how much I see of him daily. The back of his balding head!!

To keep the sanity, since I am working from home now, we have turned the 2nd guest bedroom upstairs into his office. I have retained guest bedroom #1 for myself.

And as you can all imagine, I have organized it and made it 'girly' and all Penn State for me!!

And of course there is a place to Winnie too. This is his go-to stop. The futon in my office.

I'm sure that you also noticed that I have re-vamped the blog. Just trying to give it a little face-lift. Maybe one day it will return the favor. You may also have noticed that I added a 'Dog' tab to the page as well. Winston will now be contributing his own thoughts and pictures (added by me) . Believe it or not, he has a lot to say and has a very expressive face!!

We look forward to hearing your comments and always remember to keep Andrew in your thoughts. He continues to do well and amaze me daily.

Also ... if you are not a Follower on this page yet, sign up!!! I know I have more Followers than 43 .... let's raise that number while we raise awareness for rare diseases!!

Raising Awareness for Rare Diseases ......

On the Horizon

Today's forecast; snow, rain and ice. All the things that make February in DC what they are. We are to far south to only get snow and to far north to only get rain ... so we get the crap in between. Luckily February is a short month.

As for our lives, Andrew and I went to Philadelphia about a week ago to check in with his specialist Dr Staddon at UPenn. All is well with Andrew, besides a torn MCL (good job slugger), and he does not have to return to UPenn until May for a follow-up appointment. All good news from the doctors prospective and from ours as well.

Andrew is diligently studying to take the VA Bar exam again in February. Most of you know, he only missed the cut by a few points so its back to the drawing board and studying for a few more weeks. He is taking the Bar in Norfolk on February 22 and 23. Think good thoughts for him, he needs them right now.

As for me, I have left my position at George Mason to continue to develop my real passions in life. I have become the part-time Chapter Director of the Northern Virginia National Ovarian Cancer Coalition and the Virginia Chapter Leader for the Sarcoma Foundation of America. Both are already keeping me busy to raise money for 2 areas very close to my heart. I look forward to see where this chapter in life takes me next.

Stay tuned ...

Raising Awareness for Rare Diseases .......