The Diary of a Cancer Patient's Wife

With flying colors

2011-04-20T16:07:00.000-04:00

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

2011-04-04T22:48:00.000-04:00

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

2011-03-28T22:29:00.000-04:00

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 ...

2011-02-28T23:06:00.001-05:00

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

2011-02-27T22:52:00.000-05:00

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

2011-02-23T14:41:00.000-05:00

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 .......

2011-02-22T16:02:00.000-05:00

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

2011-02-18T15:40:00.000-05:00

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

2011-02-17T20:05:00.000-05:00

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

2011-02-16T16:51:00.002-05:00

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

2011-02-14T23:25:00.000-05:00

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

2011-02-13T13:25:00.007-05:00

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

2011-02-01T12:40:00.002-05:00

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 ......

2011-01-12T15:00:00.003-05:00

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 ........

All I want for Christmas ....

2010-12-16T21:40:00.002-05:00

Dear Diary,

No matter how hard I try or how many times we return to Dr. Felice's office, I still get an

indecisive pit in my stomach when I walk through the front door. One of the greatest gifts I have is that I have a gut feeling about everything. My gut can tell me if PSU is going to pull out the win or if I'm going to be offered a job or even if the steak is done on the grill without really even looking. My gut and a bit of common sense has gotten me far in life, an undergrad degree, a masters, a marriage .... but now nothing.

Cancer has weakened my greatest super-power and has made a crack in the foundation of my house of cards. I can never predict what Dr. Felice is going to say from month to month. Cancer is so unpredictable and I'm afraid that no amount of gut or common sense can change that.

Though Andrew had a good appointment today and his chem panel blood tests seem normal, Dr. Felice is still sending out Andrew's labs to be further analyzed because of his never-ending fatigue. Dr. Felice has also ordered an MRI for Monday to rule out any further cancerous activity that could be contributing to his exhaustion. But all of this is really being done to just be overly cautious.

Of course going to any doctors appointment, at this point in our lives, adds anxiousness and stress to the day but we continue to think positively. My gut tells me that everything will continue to be stable but my brain always stops me and tells me to just take it one step at a time. And if Santa is listening, I would really really really like to have a crystal ball that predicts the future. Life is hard enough without this stress every 3 months.

But as for Andrew, he continues to be a mountain man .... see picture above. Dr. Felice even gave Andrew an early Christmas gift by teaching him one of his famous card tricks. My gut tells me that Dr. Felice only reserves his card trick secrets for really special patients. And I know Andrew falls into that category .... and for that I will forever be grateful.

Raising Awareness for Rare Diseases .

Love, Hugs, Kisses, Awareness and Hope ~ Amy

Holiday Wish List

2010-12-07T14:34:00.004-05:00

Some days I cannot help but be nostalgic and think back to last year at this time. Andrew had finished radiation and was continuing on with chemotherapy. The end of treatment seemed so far away and normalcy was a thing of the past. But we managed (and I'd like to report, that just like last year I am already done with the holiday shopping :) ).

Though Andrew's cancer is a thing of the past, I sometimes find it hard to believe. Andrew and I both look at life and what is important a lot differently than we did in the past. We don't stress the little things, find joy in mundane activities and enjoy whatever comes next in life.

During this holiday season, we hope that our loyal readers will do the same. The holidays can be a stressful time, especially for those going through life-altering experiences. We ask everyone to do their part to find joy in every task, big or small, they encounter over the holidays. Spend time helping others who need assistance and take time out of your day to make someone else's day special.

There are many things you can do from volunteering; helping to wrap gifts; giving to the less fortunate; or just donating your time. We hope that you can all add something like this to your holiday wish list.

Have a safe, happy and healthy holiday season.

Raising Awareness for Rare Diseases .....

What does my health insurance plan mean for me?

2010-12-01T18:03:00.000-05:00

Health Insurance has changed drastically over the past 30 years and has become more of a luxury than a given. With the country in an economical recession, employers are looking to make cuts and unfortunately, health insurance with its high premium costs are the first to go. But even with cuts, health insurance companies are offering more and more options to their plans. So what do they all mean?

In general, health insurance can be broken up into 4 categories: Traditional Indemnity plan (often called fee-for-service plans); PPO or Preferred Provider Organizations; POS or Point-Of-Service plans; and HMO or Health Maintenance Organizations.

A Traditional Indemnity Plan or Fee-For-Service (FFS) plan is probably an option that is not as well publicized as the other plans on the list. They do not have a contracted network of health care providers; instead, they decide on a set amount that they will pay for each service. The way the plan usually works is that a patient may have a procedure done at the hospital that costs $2000. The FFS might only reimburse for $1500 of that procedure. That means the patient is responsible for the remaining $500 plus whatever may be charged for any doctors or office follow-up visits. The plan does allow for a lot of flexibility to see whatever doctor or specialist the patient would like to see, the downside is that the cost could become drastically higher than being with one of the other 3 plan options.

Choosing the Preferred Provider Organization (PPO) as your health insurance option allows you the flexibility to receive medical treatment ‘in network’ (a database of doctors already preauthorized to treat you as a patient for a fixed cost determined by the doctor’s office and the health insurance company) for a fixed fee or ‘out of network’ (not under the rules above) for a higher premium cost. PPO’s are also more flexible and do not require a Primary Care Physician.

The Point-of-Service (POS) plan is a cross between the PPO plan and the HMO plan. Like an HMO plan, a POS plan requires that you have approval from a Primary Care Physician before seeing a specialist and will cover almost all charges as long as you choose someone with the network of prescribed doctors. But similarly, the POS plan is also flexible like the PPO plan in that you can choose to see a doctor out of network for usually a small co-pay or fee.

And a HMO or Health Maintenance Organization is a form of health insurance where the hospital and health care provider will work out an agreement to provide the most affordable form of insurance to the insurer. HMO companies work with hospitals and doctor’s offices to outline the specifics of what they will and won’t pay for services rendered– with no exceptions. For this reason, persons with HMO coverage must only use doctors and hospitals ‘in-network’ to receive treatment or they will be charged fully for the services provided. HMO patients must also have a Primary Care Physician approval before having any specialist treatment.

Different companies and different employers may offer variations on these 4 categories, so it is important to fully read your health insurance options before choosing the one that is best for you and your family. Remember to contact your benefits representative in your office to ask any questions, question charges from procedures or medical bills, and voice any concerns you have about your current coverage. Also ask scenario questions about each of the health care options available to you. What you would if, what do you do when, who do you contact if ….. It is important to know the in’s and out’s of your policy before something happens so you can be prepared for what to do next. Also, keep a paper-copy of your policy available if ever needed in case of emergency.

Each year companies have the option to change or maintain the same plan structure, so speak up if you feel something could better benefit you and your fellow employees.

Raising Awareness for Rare Diseases …..

Vote Coach John Troxell!

2010-11-29T15:51:00.000-05:00

Vote Coach John Troxell!

To work or not to work .... that is the question.....

2010-11-29T15:14:00.001-05:00

Hearing that you have cancer, can be hard enough to swallow, but thinking about what to do next in terms of your every day life can be a challenge. If you are anything like Andrew, who is a work-a-holic, it will be hard for you to stomach the fact that you may not be able to continue to work full-time or at all during your treatment. Every person is different and each family has to take the time to figure out their own financial situation before making any rash decisions that may alter their lives forever.

Once you have a firm diagnosis, you should take the time to sit down with your human resources representative to fully understand what options are available for you. Knowing your legal rights about your job status, paid days off, medical insurance plan, long term and short term disability.

After speaking with your HR representative and understanding exactly what is expected of you if you were to need time off or special accommodations during your treatment, make sure you are aware of your legal rights under the Americans with Disabilities Act (ADA). The ADA is a federal law that prohibits employers from discriminating you in all phases of the employment process. he law protects an employee or a job applicant during the application process, testing, hiring, medical exams, promotions, layoffs, benefits, compensation, and leave time. The ADA also protects persons who have disabilities.

A cancer diagnosis is not automatically covered as a disability under the ADA. Individuals with cancer may have a qualifying disability if they can show a substantial limitation on a major life activity (even when an impairment is episodic). Individuals may also be protected under one of the other two prongs of the ADA—namely, that they have a history of an impairment or are being regarded as having an impairment.

The Family Medical Leave Act also protects the person effected with the disease and their spouses' job if they are unable to work and need to provide full-time care to the sick party. The law requires employers to provide employees with up to 12 weeks of unpaid job and health insurance for protected medical leave during a 12-month period. The FMLA applies to employers with 50 or more employees, and employees must have worked for the employer for at least 12 months in the past seven years and to have worked 1,250 hours during those 12 months. Leave time under the FMLA can be taken as a 12-week block of time or can be taken in intervals, such as taking every Friday off to visit the doctor or receive treatment.

In addition, two federal laws help people with preexisting conditions maintain their health insurance coverage after leaving a job: COBRA and the Health Insurance Portability and Accountability Act (HIPAA). In addition, the new national healthcare reform law also contains protections and possible resources for individuals with preexisting medical conditions.

If you have questions related to the legal issues attached to your cancer diagnosis, reach out for help. The Cancer Legal Resource Center (CLRC), a joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles, can provide valuable assistance. Established in 1997 in direct response to the legal problems encountered by many cancer patients in the wake of their diagnoses, the CLRC provides free information and resources to cancer patients, survivors, caregivers, healthcare professionals, and others coping with cancer, through educational seminars and conferences, national community outreach, and its telephone assistance line: (866) THE-CLRC [843-2572].

Who .... What ..... When .....

2010-11-25T21:59:00.011-05:00

Coming to terms with the fact that you have cancer can be hard enough, but trying to figure out Who you need to see, What help that physician will be to you, and When to go and see them is the tricky part. Though there are many different areas of oncology, i.e., breast cancer, peds, rare diseases etc, the specific specialty areas stay the same across the board.

It is important to speak to your regular oncologist/hematologist at the beginning of your diagnosis as to when you should start to research and begin to set up appointments with other specialists besides him/herself to keep the progression of your treatment on track. Ask your current oncologist to help you to research other specialists in your area and health plan that would be of benefit to you and who will work with the already existing chemo plan you have in place.

Who to see?...... Besides your regular oncologist/hematologist, who will follow your chemotherapy treatments, regular blood work and office visits, there are also 4 other forms of oncologists who may be factors and partners in your treatment: Radiation Oncologists, Surgical Oncologists, Gynecological Oncologists and Pediatric Oncologists.

What help will these specialists be to me in my ultimate quest to be free of cancer?

A Radiation Oncologists is a physician who specializes in treating cancer though radiation therapies and methods. Radiation Oncologists investigate the use of x-rays, electrons and gamma rays to destroy cancer. Radiation therapy is used on most types of cancers including breast cancer, lung cancer, prostate cancer, skin cancer, brain tumors, some sarcomas and others.
Surgical Oncologists are surgeons who specialize in the surgical removal of cancerous tumors. Surgical Oncologists do not train as an internist, like most other oncologists. A surgical oncologists is a general surgeon who does additional training in oncology and removal of tumors.
A Gyn/Onc specializes in diagnosis and treatment of cancers of the female reproductive system, including ovarian cancer, cervical cancer, uterine cancer and more. Gynecological oncologists are doctors who trained in OB/Gyn and then choose to sub-specialize in oncology, by completing additional fellowship training.
Pediatric Oncologists specialize in diagnosing and treating individuals under the age of 18 years of age who are suffering from cancer.

And when would be the best time for me to see these specialists? Depending on the type of cancer you are diagnosed will depend on when and what specialists you will need to see. For example, Andrew had Ewing's Sarcoma in his left hip. The protocol was to start chemotherapy for 4 rounds and then take a break to either have radiation treatment or surgery to remove the tumor and then to continue with about 8 to 10 more months of chemotherapy treatment. Since this protocol was very specific, it was important that after feeling comfortable with a Ewing's specialists, we began to immediately meet with Radiation and Surgical Oncologists to talk about Andrew's options, risks and possible outcomes from each of the options.

As a whole, it is important to get more than one opinion for any answer you are given to make sure you are doing what is right for you and what you feel most comfortable. But it is also important to keep a balance as well. Too many opinions can make you even more confused. Andrew and I (along with his family) saw at least 4 doctors in each of the respected fields. After all of the data was collected, we decided to choose radiation since the outcome results and further risks of cancers were no better than the surgical option, which would have left Andrew with a shorter left limb and other disabilities that would be unlikely reversible.

No matter what you choose it is important to be open-minded and to listen and take notes on all options presented to you. Also ask each doctor the same questions so that you have equal information to work with when you make your decision. A few questions that may be helpful to ask each doctor to explain:

the cancer diagnosis and its stage
discuss the treatment and the treatment options available to you
how they will be delivering the care of the treatment to you, ie, techs, nurses, staff, etc you will be dealing with
who will be the point of contact if you have more questions
what the side effects of the treatment will be
why do they recommend their way of treatment instead of another avenue of treatment
what is the expected timeline of treatment
what is the expected recovery time (if any)
what are the short term and long term effects of the treatment
ask about your ability for reproduction (if applicable)
and how much experience they have treating this type of cancer with this sort of treatment they are recommending.

Good luck, stay calm, be alert and take good notes and you will be able to make an informed decision that will serve you in the best way as you continue through treatment.

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

How to be Thankful for Cancer.....

2010-11-24T22:19:00.003-05:00

One of the most frequent questions that I’m asked by friends and family is how we were able to make it through the past year and still smile. To be honest, some days are easier than others but in general we are thankful for the past year. Yes, Thankful. And today, on Thanksgiving 2010, we have a lot to be Thankful for. First off, we are thankful for the positive outcome of Andrew’s health after 60+ treatment days of chemotherapy and 30+ days of radiation. We are also so Thankful for our supportive friends who keep up-to-date on Andrew, call regularly, send cards, gifts, come to visit and never ask for anything in return. There are no words to describe what your friendships mean to us and how we could never repay you for your kindness and love. We are also thankful to our parents and brothers who never hesitated to drop everything to drive hours and hours to clean our house, do our laundry, cook dinner, watch the dog, hang new doors, replace our flooring and attend what seemed like never-ending doctor appointments with us. I’m sure our brothers will find a way to have us pay them back …. manual labor of some type or something to those effects …. But as for our parents, we know Andrew’s health is enough repayment for now.

We are also Thankful for the amazing medical team at Reston Hospital on the 4^th floor oncology wing and the Outpatient Infusion Center. Nursing is a Thankless job but we know that this outcome would have been possible with your understanding, care and patience. And one of the biggest people we are Thankful for is Dr. Felice, Andrew’s oncologist. I am almost positive that Dr. Felice lost as much sleep during this past year as I did. We are Thankful for his proactive and open approach to medicine and this ability to leave his ego at the door and see the greater outcome, Andrew’s overall health and well-being.

Believe it or not, we are also Thankful for the cancer itself. Not for the disease but for what the disease stands for. Most people never get the chance to practice or carry out their marriage vows, at least not this early on in life. We understand what it about to stand by someone for better or worse, in sickness and in health, and for that we are Thankful.

So today be Thankful for everything that life has given you no matter how good or bad. Life has a funny way of making you Thankful for even the most devastating and life-changing events … and for that, we are Thankful.

Raising Awareness for Rare Diseases ………

How to make an M.D. ........

2010-11-23T21:48:00.023-05:00

Having a day job as an academic advisor to premed students gives me a little insight into the psyche of a potential M.D. candidate in the making. The most common thing I hear from students, is that 'they were born to be doctors.' I hate to break it to pre-med students but becoming a doctor is not like being born into a family business. Doctors train for years and years to hone their craft to see patients. Becoming a doctor is also an on-going academic endeavor that requires total commitment and dedication of putting someone else needs in front of your own. So I hate to break it to premed students but the only thing you were born to do was eat, sleep and poop!!!

So what does it take to become a well respected M.D.? Finding a doctor that fits your needs and the needs of your family is no small task. Here are a few things to know about the medical and academic training associated with your doctors name.

When it comes to finding a doctor, it is good to know the terminology that comes along with the person who is about to care for your medical needs. Not all doctors have everything in common when it comes to their specialties or years of training but a lot of their schooling is the same. A doctor that takes care of cancer patients is called an oncologist. Not all general oncologists are specialized in every area of cancer treatment. When it comes to rare diseases, some general oncologists may go their entire medical career and not see a case.

All physician have at least an undergraduate degree from an accredited university, have taken all of the prerequisite courses needed to apply to medical school (Biology, Chemistry, Physics and Math) and completed the MCAT's. All doctors have also gone through the medical school screening process of applying to the schools of their choice, sending in letters of recommendation, transcripts, resumes and a personal interview process held on the medical campus of their choice.

After those 4 years of medical school, all medical school students receive their M.D. (Medical Doctorate) and also have to complete a residency that lasts anywhere from 3 to 7 years of postgraduate education and training. Physicians also must pass a licensing exam to practice in their state. Each state or territory also has their own procedures and general licensing exams for physicians to complete.

Dependent on the specialty area the physician would like to practice will also depend on how many years further of schooling and training will be needed. For example, to become a board certified medical oncologist and hematologist (the treatment of malignancies of the blood and blood-forming tissues) a physician needs to complete the mandatory additional education and training in the dual sub-specialty of medical oncology and hematology. Oncologists must also be board certified by The American Board of Internal Medicine (ABIM), www.abim.org. But this is just one example of one type of oncologist. There are many other specialties and numerous other board certifications that need to be completed in other areas of oncology.

To learn more about your doctors specific certifications, please check out The American Board of Obstetrics and Gynecology, www.abog.org; The American Board of Pediatrics, www.abp.org; The American Board of Radiology, www.theabr.org; and The American Board of Sugery, www.absurgery.org. All physicians must also maintain their certifications on a regular basis by re-examination on a state and speciality level.

Becoming informed and armed with the background education needed to find the correct physician for your medical needs, will make the process of finding the right doctor for you a less stressful endeavor. Never feel embarrassed to ask your physician about their background, their medical training or their certifications. Any trustworthy physician will gladly share this information with you to help put your mind at ease. Also remember to Google your doctors name and come prepared to your appointment if you have questions about their training or skill sets. Knowledge is power and remember to use your voice.

Raising awareness for rare diseases .......

What's in a name?

2010-11-22T22:07:00.003-05:00

To even be classified in the rare disease category, the disease can only have effected less than 200,000 patients. Defined by NIH, rare diseases are "life-threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them." In total there are about 6,800 rare diseases that affect about 25 million to 30 million Americans in total.

In the world today, there are only about 50,000 cases of patients who are living with a Sarcoma related cancer. Of that population, about 12,000 new cases are diagnosed each year and about 5,000 patients lose their battle each year as well.

A Sarcoma is a rare cancer in adults (1% of all adult cancers), but rather prevalent in children (about 15% of all childhood cancers). It is made up of many “subtypes” because it can arise from a variety of tissue structures (nerves, muscles, joints, bone, fat, blood vessels - these are collectively referred to as the body’s “connective tissues”). Because these tissues are found everywhere on the body, sarcomas can arise anywhere. Thus within each type of the “popular” cancers, there is the occasional surprise for the medical pathologists (e.g., breast sarcoma, stomach sarcoma, lung sarcoma, ovarian sarcoma, etc.). But the most frequent location are the limbs, since this is where the majority of the body’s connective tissue resides. It is often hidden deep in the body, so is often diagnosed when it has gotten too large to enable a hope of cure.

Researchers have made considerable progress in recent years in figuring out ways to diagnose, treat and even prevent a variety of rare diseases. Still, much more remains to be done because there are no treatments for the vast majority of rare diseases.

The Orphan Drug Act of 1983 provides incentives for drug companies to develop treatments for rare diseases. In the 25 years since the Act was signed into federal law, the U.S. Food and Drug Administration (FDA) has approved more than 340 treatments for rare diseases.

Recently, the National Institutes of Health (NIH) launched a new effort, called the Therapeutics for Rare and Neglected Diseases (TRND) program, to create an integrated research pipeline to jump start the development of new treatments for rare and neglected disorders. The NIH Office of Rare Diseases Research (ORDR) handles oversight and governance of TRND. The laboratory work for TRND will be performed in a facility administered by the intramural program of the National Human Genome Research Institute (NHGRI).

To provide patients and their families with timely and reliable information, ORDR and NHGRI have created the online Genetic and Rare Diseases (GARD) Information Center. GARD offers a searchable, frequently updated Web site located at: http://rarediseases.info.nih.gov/GARD. Users can also contact GARD's information specialists directly by e-mail, telephone, FAX, TTY or postal mail.

In addition to GARD, there are many non-profit groups that provide information and support, promote research and advocate for policy issues related to various rare diseases. Among the groups that span a broad range of disorders are the National Organization for Rare Diseases, http://www.rarediseases.org, and the Genetic Alliance, http://www.geneticalliance.org.

Also, Uplifting Athletes, http://www.upliftingathletes.org/, partners with collegiate football teams raising awareness through outreach, research, education and advocacy for rare diseases.

To learn more about specific rare diseases, please check out the National Institutes of Health, Office of Rare Disease Research, http://rarediseases.info.nih.gov/Default.aspx.

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

Abnormal is the new black ....

2010-11-22T13:32:00.003-05:00

Initially I started this blog to help our friends and family members track Andrew's progress through his year-long cancer treatment. But more recently I have been receiving phone calls and emails from friends and family members about their own life-changing medical experiences, that I thought I would broaden my topics to help my loyal audience understand how we managed Andrew's overall care, health and well-being and our own sanity throughout this ordeal. And how we continue to deal with issues as they arise on a daily basis ... here is our story.

As much as I think our married life is 'normal', I have come to realize that my perception of what is 'normal' may be a little off base. About 2 months ago I started a new job at a university in the Northern Virginia Area. Meeting new colleagues and learning a new routine has its' own challenges but trying to explain why I have not been working for the past 10 months, and that I didn't have a baby and wasn't laid off by the economy or the recession, has left me to question about the normalcy of our past year.
Anyone who has gone through a major life-changing experience can relate to the awkwardness that occurs when colleagues ask, "So what were you doing before you came here?" Any normal, warm blooded mammal would want to respond honestly, that is of course your first reaction, but not all recipients of the answer can handle the truth. I have been delicately walking the line between the truth, 'I have been taking care of my husband who was battling cancer for the past year'; and a canned less truthful answer, 'I was at another university and then took some time off for the past year to deal with personal matters.' No matter which answer I give, eyebrows raise and in most cases curious questions follow. Saying that you have been away from work on personal matters usually gives people the impression that you, personally, were locked up in a padded room, for some time ,and only given foods that could be eaten with a spoon while rocking back and forth humming to yourself .... Kinda think about it, maybe I should have chosen that option this past year!! But using the C word ... Cancer ... always makes people stop in their tracks. When I say cancer, I can see people's reaction. They tense up and give me that 'deer in heads lights' look so commonly associated with the shock of hearing that someone Andrew's age was struck by this disease. And usually after the initial shock leaves their body, a wave of pity follows with a follow-up question of, "So is he ok now?" I find myself laughing at that question now and one day I'm going to be brave enough to answer back, "That depends what your definition of ok is? If your definition is that we live our life every 3 months to 3 months just waiting to see if his most recent scans are clear from cancer or if it has reoccurred and wondering what we will do next if it has ... then yes, he's just fine!!" But my normal response is, "yes, he's fine."
For most people, it is hard to fully grasp the concept that someone who seems very healthy on the outside, actually has cancer on the inside. Something that I've learned first hand is that cancer does not care who you are, how much money you have, if you are a good person or not, or if you can handle the disease. It can strike at any time and without warning. And no one is immune to its deadly path of fury.
So here are a few things to remember when someone tells you that there life, loved one, or themselves is or has been affected by cancer:

1. Be supportive, but not intrusive. Ask if you make dinner; take the kids for an afternoon; drive them to an appointment; do the laundry or clean the house. Name specific things you would be happy to do instead of putting the 'ball in their court' to call when they need something.

2. Even if you are upset to hear the news, be respectful of others feelings too. It is hard enough for some people to say they have cancer without having to console you.

3. Listen without always needing to respond or add your own personal story to the conversation. Cancer patients and their caretakers sometimes need to vent their fears and frustrations without judgment or comment.

4. Treat the person affected by cancer as normal as possible. No one wants to be treated like they are sick all the time, so allow the patient to back-out of plans only if they want to.

5. Don't be afraid to talk about the illness but don't always make it the topic of conversation. Being inquisitive and concerned is natural but being overbearing can become a burden.

6. Be honest with the person who has cancer if you cannot handle hearing about their disease. Not everyone can bear to see and hear about the patient for their own personal reasons, but being honest upfront is always the best policy. In that case, sending cards or emails is a great way to show you care.

No matter what, always be mindful of what the cancer patient and their families wishes may be but always be supportive in any way possible. Cancer does not always have to mean the worst and with new research being discovered every day, maybe one day soon, we will see a cure for this senseless disease.

Raising awareness for Rare Diseases ....

Raising awareness for rare diseases ....

2010-11-22T09:58:00.000-05:00

Today begins my own personal journey of writing more blogs, less about mine and Andrew's personal day-to-day activities and more about the broad topics that we have encountered over his year of treatment. I get calls all the time from friends and family members who are dealing with their own life-changing medical events and they ask how to find the right doctor; keep up-to-date on the latest medical articles; organize their medical records; and how to deal with insurance. This is a good time for me to write about how I made it through this time, kept my sanity (which is obviously up for debate most days) and came out the other end with a smile. I am aware that not all life-changing events turn out with a positive outcome like ours, and I will touch on more sensitive topics as well.
I look forward to receiving feedback from my loyal followers and hearing about questions you would like answers. And as always, thank you for your love and support.

Raising awareness for rare diseases ......
xoxo,
Amy