All I want for Christmas ....

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

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?

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!

Vote Coach John Troxell!

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

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 .....

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.....

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 ………