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 ………

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

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?

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 ....

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 ....

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

Lot of updates

Well Hello Hello loyal followers,

There is lots and lots to report on in our lives. Since finishing treatment, Andrew has returned to work full time and is thriving. He had his first follow-up scan which showed a small 7 mm. mass on his right psoas muscle (the muscle that connects from your outer hip to your backbone). There is no sign of re-occurrence in the primary spot of his tumor, his left hip, but this small mass is something the doctors will continue to follow and keep up to date on. He has had one scan since the first initial scan and the mass has not changed size ... so we are on a watch and wait approach up to this point. Of course, this makes everyone a little nervous but we just try and go forward every day and live for what comes ... and not for what comes next.
We also switched doctors again to Dr. Staddon at the University of Pennsylvania Medical Center. Dr. Staddon has proven to be the voice of reason and the positive energy that helps to make our medical treatment family complete. We look forward to our interaction with him in the future. He is also the doctor who treated Mark Hertzlich's, the Boston College Football player with the same disease.
In many ways Andrew has returned to his old self. He has regrown his hair and now has a beard and bushy eyebrows to match!! We are both also enjoying attending as many PSU football games as possible and look forward to this weekends game against Northwestern and JoPa's 400th win!!
I recently returned to work .... which is still questionable and under review. Stay turned for that!! I liked being a stay at home dogie mommy better. And Winston is enjoying his normal routine of sleeping, eating and sleeping some more!!
Andrew and I continue to be grateful to our friends and family members who have stood by us through this most difficult time in our lives. We are better and stronger people for your every present support.
We also want to report that we have collect 522 books and many many magazines for our Book Nook Drive for the Reston Hospital Infusion Center. If anyone is interested in donating any more books or magazines, please feel free to let me know (by email or phone or facebook) and we would be happy to make arrangements to pick them up from you. We are looking forward to getting the bookshelves in place for the patients and their families to enjoy.

Stay warm ......