With flying colors

Dear Friends and Family .... and loyal CPW readers,

I am happy to report that we just found out today that Andrew passed the remaining portion of the VA Bar, so he is a full Virginia attorney.  He is very excited!!!

Thank you to everyone for your overwhelming love and support...

Raising Awareness for Rare Diseases ...

A Man on a Mission to Cure Ewing's Sarcoma

I feel fortunate to have been lucky enough to talk with Dr. Jeff Toretsky, about Andrew's cancer in 2009.  Dr. Toretsky is an associate professor of oncology at Georgetown Lombardi Comprehensive Cancer Center in DC.  He no longer sees patients and only works on research, which I couldn't be more thankful.  Dr. Toretsky was recently awarded a grant from the National Cancer Institute (NCI) for $4.37 million to advance his laboratory work in the treatment of Ewing's Sarcoma.

http://gumc.georgetown.edu/news/stories/197937.html

Our journey and path in life can begin with just one chance encounter and can alter that path forever.  Dr. Toretsky's college friend who lost his battle to Ewing's altered his life's path just as Andrew's Ewing's has changed mine.  Sometimes cancer can change your life for the better .....

Raising awareness for Rare Diseases .....

Appreciate the Patience

Hello Loyal Followers,

Thank you all so much for your patience and understanding.  Andrew and I are both doing well.  We are currently doing a massive overhaul to The Diary of a Cancer Patient's Wife blog and turning it into a website.  We hope to have some of it up and running within the next week or two.  In the mean time, we appreciate all of your patience.  The new site, when its ready will be www.cancerpatientswife.com

Raising awareness for rare diseases .....


Amy and Andrew

Pain in the Amy ...

Well it's official, I have a demanding and dominating personality.... which probably comes as no surprise to anyone except for me!!  Today was my first day at the National Conference for NOCC in Dallas and after a work personality test I learned that I can be a big P-I-A.... Pain in the Amy!!!!  So I guess I'm going to have to work on that one.  

But the conference is going great and I'm really learning a lot about fundraising, awareness, diseases, dealing with volunteers and about myself.  Sometimes it honestly hard to hold back the tears when you think about it and how many people can benefit from knowledge.  It makes me want to go door to door and educate people not only on Ovarian Cancer and Sarcoma, but cancer in general.  Even though I've gone through everything with Andrew, I am still amazed at the number of people who cannot read their own bodies and tell that something is wrong.  You have to be your own advocate and lobby for your health.  You knows you best.

Today was also National Rare Disease Day!!!  Uplifting Athletes named Jordan Culbreath of Princeton University the 2011 Uplifting Athletes Rare Disease Champion following his inspirational battle with a rare disease and his return to the field.  Congratulations Jordan!!!
To read more, check out the article on the Uplifting Athletes website: http://www.upliftingathletes.org/ua-news/jordan-culbreath-named-2011-uplifting-athletes-rare-disease-champion





I'm excited to see what tomorrow brings and hold tight to the thought that maybe one day rare diseases ... and cancer in general .... will be talked about in the past tense.  Cancer and Pain, will become, never again.

Raising Awareness for Rare Diseases .....

Crazy Sexy Yellow

What I realized today is how much cancer has given me.  It’s given me the opportunity to meet so many amazing people, travel to many amazing places and learn so much about myself.  Right now I’m on a plane to Dallas, TX to attend the National Ovarian Cancer Coalition conference for the week to hear more about this disease.  Though it has nothing to do with Andrew’s Sarcoma, it’s a cause near and dear to my own heart and to the hearts of the people around me.  I’m sad not to have Andrew joining me on this trip and I’m worried about him being able to take care of Winston for the week all by himself, but he was able to do it before we got married; so I’m sure that he can handle himself now ….. but if any of my friends who live close read this, give him a call this week to make sure both he and Winston are alive and eating (more than just cereal).

I know I’ve said many times before that I’ve made cancer my career and don’t think it’s a bad thing for now.  I’m reading an amazing book right now by Kris Carr.  She did a documentary back in early 2002, after being diagnosed with a type of sarcoma herself.  She’s also speaking at the conference that I’m about to attend.  I wish that I would have been given this book when Andrew was diagnosed.  She gracefully and humorously explains how to navigate your way through treatment, insurance, doctors, love, relationships and telling everyone you have cancer; with a brave face and a smile.  She’s really inspiring and a pioneer who puts a better face on the Big C word as she calls it.  Though I hope none of you need it, check out Crazy Sexy Cancer (the series). 

On the Andrew front, I think I’m finally getting him back after taking the Bar Exam.  He’s less stressed and ready to take on the world.  Though he now has to wait until the end of April to find out if he passed or not.  I like to think that this time the glass is half full and that he will pass …. I mean really, give us a break.  Doesn’t he at least deserve this one!!  He will find out right the results right before his next 3 month check-up with Dr. Stadddon, taking place in mid-May.  If I had to choose, of course, I would rather have his health, but really, can’t we get this one too!!!  But for now more wishing, hoping and praying …..

Tomorrow is also a holiday that we hope all of you will celebrate with us.  February 28^th is National Rare Disease Day so please wear your Yellow in support of Andrew and for all patients and their families suffering from and dealing with Sarcoma.  This year we get to celebrate Rare Disease Day as another great milestone for Andrew.  He’s going on month 8, clear and free from cancer.  So wear your yellow -- -loud and proud. 

Raising Awareness for Rare Diseases ….

The Hangover

Today is like a bad hangover.  You can't remember how you got here, why you did what you did, and know that you never want to do it again ..... and by the way, I didn't even take the bar exam.  I can tell you that we have done our best to enjoy our time in Norfolk, but its time to return to our home, our dog, and our life.....  Andrew is in the last hours of taking the Virginia State Bar Exam and we hope to be our way home around 5 pm tonight. I'm continually amazed by Andrew's progress since completing chemo only 7 months.  He's stronger than ever and is looking very confident and lawyer-like in his suit.  I'm very proud of him, but hope that we never have to do this test again.  And allow me to remind you again .... I'm not even taking the exam myself.

And though we are not home with Winston at the time, we have been receiving daily pictures of what he is up to why mommy and daddy are out of town.  For your daily Winston fix, here he is in the snow.
PS:  He hates the cold weather and prefers the spring and the fall when he can sprawl out on the back patio and bark at the neighbors, who are making too much noise for his comfort.

Continue to think good thoughts for Andrew as he finishes the bar exam.

Raising Awareness for Rare Diseases .....

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 .......

Just Breath ......

Move over David Blane ..... Amy Waxman is here to show you what it really means to hold your breath. According to the guiness book of world records, Blane holds the record for holding his breath under water the longest, 17 minutes and 4 seconds. Though I find this an impressive accomplishment, I have to say that as a cancer survivors wife, I have him beat. Not a scan takes place that doesn't cause my heart to skip beats while I hold my breath waiting for the results.

Though Andrew's second 3 month appointment with Dr. Staddon in Philadelphia is not until Friday, we have read and reviewed the scans with Dr. Felice and Andrew is still all clear. This is the greatest news that we could be given. And even the small spot that showed up on a previous scan as questionable has shrunk in size. As you can all imagine we are elated with the news and continue to move forward checking this 3 month appointment off the books. Andrew will continue to have scans every 3 months for the next 5 years.

Up next is trip to Disney that we are planning with Linda and Pete, Adam and Nikki for the beginning of May. We know that the next 3 month appointment will happen around that time as well but we continue to focus on the positive and plan for this trip.

So David Blane, you may be able to hold your breath and break a record, but I hold my breath all the time, just waiting ..... for the shoe to drop or the rainbow to appear. But at least for now, we've found the pot of gold and continue on the yellow brick road of life.

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