| May 13, 2013
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FREE Kit to Help Manage Side Effects from Chemotherapy

A sample of an Adult Comfort Kit

A sample of an Adult Comfort Kit

We all need a little love once in a while… and if you’ve been diagnosed with cancer and are receiving chemotherapy, you deserve a little extra lovin’. That’s what Peppermint & Ginger Comfort Kits are all about…

 

Peppermint & Ginger Comfort Kits are FREE kits created to help provide comfort and help alleviate some of the more common side effects caused by chemotherapy.  An “Adult Kit” contains peppermint and ginger teas (which can help ease nausea), a soft bristle toothbrush, alcohol free mouth wash and toothpaste and lip balm (to help ease oral side effects experienced as a result of treatment), warm socks and a relaxation CD.  When possible, P&G adds in other goodies as well.  Their “Pediatric Kit” contains hot chocolate instead of teas and it’s contents will vary depending on the age of the patient.

 

If you know of a cancer patient receiving chemotherapy or if you yourself are a patient and would like one of these comforting kits, please click HERE to request one.

Category: appendix cancer, bladder cancer, brain cancer, breast cancer, cervical cancer, colon & rectal cancer, esophageal cancer, for pediatric patients, for young adults with cancer, free services, head & neck cancer, kidney cancer, leukemias & lymphomas, liver cancer, lung cancer, managing side effects, mesothelioma, oral cancer, ovarian cancer, pancreatic cancer, prostate cancer, RESOURCES & ASSISTANCE, sarcoma, skin cancer, stomach cancer, testicular cancer | Tags: , , ,
| May 8, 2013
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FREE Discount Drug Card…. Clip & Save


Category: financial, travel, career & legal assistance, free services, RESOURCES & ASSISTANCE | Tags: , , ,
| May 7, 2013
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Innovative Research + Funding = Hope

 

During the summer of 2009, my husband was diagnosed with pleomorphic rhabdomyosarcoma.  One year later, at the young age of 47, he died.  Throughout that year, we had some of the top cancer researchers in the world working on Alan’s case.  Their efforts gave us hope that we would overcome Alan’s cancer.  This hope gave us the strength to get out of bed every day and enabled us to endure more pain and disappointment than I care to remember.

 

Despite the fact that Alan passed away, I believe that cancer is a disease that can be cured.  Although much progress has been made in the war against cancer, we still have a long way to go.  Medical research that is taking place right now continues to fuel my hope that one day we will live in a world with NO cancer.

 

CONSANO (v) to heal in Latin

 

Meet CONSANO.org, a nonprofit crowd funding platform (founded by breast cancer survivor Molly Lindquist) that enables individuals to donate any amount- small or large- to specific medical research projects they feel passionate about.

 

Here’s how CONSANO.org works:

1. Browse the list of projects & choose one (or more ;-) ) that mean something to you.  All projects have been reviewed by members of Consano’s volunteer Scientific Advisory Board to ensure that a project is legitimate, easily understood, relevant, and has the potential to lead to improvements in patient care.

 

2. Donate any amount directly to that project.  100% of your donation (minus a 2.2% PayPal processing fee) will go directly to support that project.

 

3. Receive quarterly updates from the researcher through the lifecycle of the project.  AMAZING!

 

Also check out the CONSANO blog… It features stories written by patients, family members, and friends- anyone touched by an illness.  By sharing our stories, we can help provide inspiration, hope, and a strong sense of community to others navigating their own journey.  If you’d like to share your story on CONSANO, please email info@consano.org.  To read mine & Alan’s story, click HERE.

Category: IMPORTANT INFO TO KNOW | Tags: , , ,
| May 6, 2013
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10 Things Patients Should Know Before Having Surgery

 

images-1FACT:  Surgeries and hospitals are designed to improve a patient’s health.

FACT:  Although hospitals, clinics, and doctor’s offices take many steps to keep their patients safe, medical errors happen. According to National Cancer Institute, medical errors account for 98,000 deaths per year in the United States alone.

FACT:  The more information and knowledge we (as patient advocates, concerned family members, caregivers) have about an upcoming surgery, the better able we are to help prevent medical errors (wrong medication, wrong surgery, unnecessary procedures) from happening.

The Empowered Patient Coalition suggests these 10 things patients & their advocates should know BEFORE having surgery:

  1. DECIDING ON SURGERY: Why is the surgery needed? How successful is the surgery in correcting the problem and what are the potential short and long term risks? What will the recovery process be like?
  2. CHOOSING A SURGEON: Ask about the surgeon’s experience with this particular surgery and check his or her credentials online. Is the surgeon board-certified in the specialty you require?
  3. WHERE TO HAVE YOUR SURGERY: Check your hospital online at www.QualityCheck.org or www.HospitalCompare.hhs.gov. Does the hospital have an Intensive Care Unit (ICU) and a Rapid Response Team (RRT) to respond to emergencies?
  4. SCHEDULING YOUR SURGERY: If possible, schedule your surgery for early in the day and early in the week. Try to avoid having procedures on major holidays, nights or weekends.
  5. SURGERY AND RECOVERY: Who will actually perform the surgery? Will assistants or residents be participating, and if so, to what degree? Will the surgeon be in town and available in the days after surgery?
  6. ANESTHESIA: Will your anesthesia be handled by a board-certified anesthesiologist or a certified nurse anesthetist? Who will be assisting them?
  7. PREPARING FOR SURGERY: Patients should not shave surgical site for 2-3 days before surgery to prevent small cuts in skin where bacteria can enter. Patients must not eat or drink for 6 to 8 hours before surgery.
  8. THE DAY OF SURGERY: Be sure all information on the patient’s ID band is accurate. Have all pre-operative medications, including antibiotics, been ordered and given? Be sure the surgeon signs the surgical site before the patient is sedated.
  9. ONCE SURGERY IS OVER: Have an advocate present to discuss details and ask if there were any complications with the surgeon after the surgery is over. Be sure the patient is kept warm and ask if the patient needs specific treatments to prevent blood clots.
  10. PAIN CONTROL: If the patient is using a PCA (patient controlled analgesia) pump, be aware that malfunctions can occur and watch for signs of an overdose, including shallow breathing, extreme sleepiness and small pupils. Be aware that pain medications can cause severe constipation so ask about precautions.

 

 

 

Category: IMPORTANT INFO TO KNOW | Tags: ,
| May 1, 2013
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April Awareness in May & Beyond….

This guest post was written by my very favorite Dental Oncologist Dr. Dennis Abbott of Dental Oncology Professionals of North Texas.   Thank you Dr. Abbott for all you do.  YOU are a rockstar Dr. Abbott! xox***

 

Yesterday marked the end of Oral, Head, and Neck Cancer Awareness Month. It was, perhaps, one of the most active awareness months I have been a part of thus far in my career. There were walks, recipe tastings, free oral cancer screenings, and national media attention for great national and local organizations to raise awareness about the sixth most common cancer. But for those with oral or head and neck cancer, every month is April.

People touched by oral or head and neck cancer must learn to live life with a “new normal.” Things that most of us take for granted like eating, speaking, brushing our teeth, or even smiling become challenging and serve as daily reminders of a disease that forever changes normalcy. A new face or a new voice may greet family, friends, and strangers. Eating out at a favorite restaurant may be embarrassing or even worse, impossible. When once upon a time, leaving home without a watch or a cell phone may have prompted a quick return to the house, now that return visit is necessitated to retrieve the water bottle that sits on the kitchen counter.

Those affected by oral and head & neck cancer do not need stares because surgery has changed their outward appearance. They do not need need prejudice from those who try to deduce why they “got cancer.” And trust me when I tell you, those affected by oral and head & neck cancer do not need sympathy. They are survivors! They are adapters! They are inspirations!

What oral and head and neck cancer survivors need is understanding… understanding from those around them how their world has been forever changed by disease; understanding how we can increase health and quality of life for those who met cancer head on, literally, and won; and understanding how all of us can prevent oral and head and neck cancer from happening to others. This is what April was all about…raising awareness, increasing understanding, and coming together to make a difference!

So, although the calendar may say May…it is always April in my heart…because I choose to make a difference in the lives of those who have been touched by oral and head and neck cancer!

Dennis M. Abbott, D.D.S. is the founder and CEO of Dental Oncology Professionals of North Texas, an oral medicine practice dedicated to meeting the unique dental and oral health needs of patients battling cancer. In addition to private practice, he is a member of the dental oncology medical staff at Baylor Charles A. Sammons Cancer Center and Baylor University Medical Center in Dallas. Dr. Abbott is a nationally recognized leader in oral health care associated with cancer care. He regularly publishes articles on the subjects of dental oncology and oral medicine and presents lectures to professionals and patients throughout the North America. 

Category: head & neck cancer, oral cancer, PREVENTION & EARLY DETECTION | Tags: , , , ,
| April 30, 2013
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WTF is a Cancer Coach?

 

I’ve heard of a football coach and a basketball coach– who hasn’t, right?  I’ve even heard of a career coach, a relationship coach, a wellness coach and a life coach… but a cancer coach???   Until recently, I had no idea there even existed such a thing… that is until I met Tambre Leighn, founder of Well Beyond Ordinary. 

 

Here’s the dealio (as my daughter always says)…

Cancer has the ability to affect every aspect of your life.  While some survivors plow through treatment and transition easily into life after cancer, others find it more difficult to do so.  In fact, it is not uncommon for people to feel victimized by cancer.  Some say that it even takes over their life causing previously held priorities and core values to shift.

 

Coaching is one tool that survivors and caregivers can use to reclaim their life after this potentially devastating diagnosis.  A cancer coach can provide you with support and tools to help reduce stress, address fears and create action plans so you feel empowered and in control again.  For a cancer coach, it’s not just about surviving a diagnosis of cancer, it’s about thriving in spite of cancer.

 

As with any profession, there are professionals who are the real deal and others who just pretend to be.  Since cancer coaching is a relatively new concept for many, I asked Tambre to suggest how we might be able to tell the difference between a qualified cancer coach and a wannabee when looking to hire one.  She suggests keeping the following in mind:

 

  • Educate yourself about coaching. Thousands of articles have been written about coaching in the past few years. Search the internet or visit the ICF Research Portal for research articles, case studies, journals, etc on coaching.
  • Interview several different coaches before you decide on one. Ask each about his or her experience, qualifications and skills.  Also ask for at least two references.  (Note: In some cases, confidentiality agreements may prohibit some coaches from giving you a reference.)
  • Look for a cancer coach who stands behind his or her work.  Often times coaches will offer an initial consultation free of charge as well as a money-back guarantee if you are not completely satisfied with the process.
  • Remember, coaching is an important relationship. Make sure a connection exists between you and the coach you choose.

If any survivors or caregivers reading this post have worked with a cancer coach and are willing to share their experiences, please either comment below or email me at robyn@cancerhawk.com.  Knowledge is power… please share the power.

 

Category: patient & caregiver support, RESOURCES & ASSISTANCE | Tags: , , , ,
| April 30, 2013
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Financial Assistance for Families of Children with Brain Tumors

 

The Butterfly Fund (created by The Brain Tumor Foundation for Children) provides financial assistance to needy families of children and young adults with brain and spinal cord tumors.

 

Who qualifies for assistance from The Butterfly Fund?

Families of children and young adults with brain or spinal cord tumors who have an unmet financial need that is a direct result of the child’s brain tumor diagnosis and who are receiving treatment/care at one of the following facilities:

  • All Children’s Hospital – St. Petersburg, FL
  • Arnold Palmer Hospital for Children – Orlando, FL
  • Bi-Lo Children’s Cancer Center – Greenville, SC
  • Blair E. Batson Hospital for Children – Jackson, MS
  • Child Life Institute – West Palm Beach, FL
  • Children’s Health Memorial – Savannah, GA
  • Children’s Healthcare of Atlanta (CHOA) – Atlanta, GA
  • Children’s Hospital – New Orleans, LA
  • Children’s Hospital of Alabama (Birmingham Children’s) – Birmingham, AL
  • Columbus Regional Women & Children’s Center – Columbus, GA
  • Dana-Farber/Children’s Cancer Center – Boston, MA
  • East Tennessee Children’s Hospital – Knoxville, TN
  • Georgia Health Sciences University – Augusta, GA
  • Kentucky Children’s Hospital – Lexington, KY
  • Kids Cancer Foundation – Loxahatchee, FL
  • Medical University of South Carolina Children’s Hospital – Charleston, SC
  • Miami Children’s Hospital – Miami, FL
  • Palmetto Health Children’s Hospital – Columbia, SC
  • Pediatric Oncology Support Team (POST) – West Palm Beach, FL
  • Shands Children’s Hospital @ University of Florida – Gainesville, FL
  • St. Joseph’s Children’s Hospital of Tampa – Tampa, FL
  • T.C. Thompson Children’s Hospital – Chattanooga, TN
  • Vanderbilt Children’s Hospital – Nashville, TN

 

Eligible expenses include, but are not limited to:

  • Assistance with rent or mortgage payments, utility bills, car loan payments, car repairs, miscellaneous household expenses, etc., which a family may be unable to afford due to loss of work at the time of a child’s diagnosis and treatment
  • Items not normally covered by some health insurance plans, such as special medications, long-term or special rehab services, hearing devices, wigs and prosthetic devices, home health services, tutoring, etc.
  • Travel and lodging expenses associated with seeking and/or obtaining treatment at locations outside of the patient’s city or state
  • Funeral expenses

All requests for financial assistance through this program must be made through social worker at any of the medical facilities listed above.  Once a family’s application is completed and signed by appropriate medical personnel, it is submitted to the The Brain Tumor Foundation for Children.  Most applications are approved within 2 -5 business days.  Funds get disbursed directly to the creditor.

Category: brain cancer, financial, travel, career & legal assistance, for pediatric patients, for young adults with cancer, RESOURCES & ASSISTANCE | Tags: , , , ,
| April 28, 2013
3 comments

6 Things I Wish I’d Known About Cancer

Image credit: 123RF Stock Photo

Image credit: 123RF Stock Photo

 

I’m beyond honored to tell you that I am now also blogging for the Huffington Post.  In case you missed my first article that I wrote for them, I am reposting it here on CancerHawk.

 

Wrapping your head around the fact that you or a loved one has cancer is no easy task. After my 46-year-old husband was diagnosed with a very rare and aggressive cancer in 2009, we were in a state of shock and paralyzed with fear. Nevertheless, we had to research treatment options, meet with doctors, schedule multiple surgeries, and start chemotherapy all in a matter of days. Talk about overwhelming! Below are six things I wish we had known at the beginning of our cancer journey:

1. Always, always get a second opinion.

No ifs, ands or buts about it: When it comes to cancer, two heads are better than one. Second opinions will either confirm what you’ve already been told or present different options to weigh. Regardless, second opinions can help to reduce the chance of misdiagnosis and provide greater peace of mind. If the two opinions you’ve received differ, get a third one. Remember, it is a patient’s prerogative to speak with as many professionals as he or she chooses. If you’ve been diagnosed with a rare cancer, I urge you to also seek recommendations from doctors who specialize in that particular cancer.

2. Be choosey.

Being best friends with your doctor is not required. You don’t even have to like your doctor. But you do have to trust their care and feel comfortable talking to them about anything related to your health. If you don’t, find a new doctor immediately. For us it was also important that our doctor be both a realist and an optimist. Eventually, we left our first oncologist for these reasons.

3. Talk to your doctor about molecular profiling.

Two people with the same cancer can and do respond differently to the exact same treatment regimens.Why? Because each person’s cancer is unique. Identifying unique genes, proteins and other molecules (called cancer biomarkers) can provide information about how your particular cancer functions and can be used to help identify potential treatment options. Molecular profiling is especially key if your doctor is choosing between multiple recommended treatments, or if your cancer is particularly aggressive or rare or has limited treatment options, or if your first-line treatment isn’t working. To learn more, visit MyCancer.com and IsMyCancerDifferent.com. Both sites have loads of helpful information on personalizing cancer treatments.

4. Visit a dentist prior to starting cancer treatments.

It’s important to see a dentist who really understands cancer before beginning treatment or as soon after diagnosis as possible. Chemotherapy, radiation therapy and immunosuppressive treatments like bone marrow transplants and stem cell transplants can exacerbate existing dental and oral problems, as well as create new painful and potentially dangerous ones like mouth sores, ulcers, inflections, bleeding, etc. Dentists who are knowledgeable about cancer and its effects on oral health can help minimize these risks before they pose serious problems.

5. Understand the goal of your cancer treatment.

Make no assumptions when it comes to your health or treatment plan. Not all treatments for cancer are given with the intent to cure. Treatment can also be given to help prevent disease recurrence, to minimize symptoms of disease, or to simply prolong survival. Knowing the goal of your particular cancer treatment and the potential risks associated with that treatment will enable you to make the most informed decisions possible about your care.

6. If you don’t know where to turn for help, talk to an oncology navigator.

Until recently, I had no idea there existed professionals who can help a cancer patient navigate their way through this diagnosis. Oncology navigators are skilled in helping cancer patients overcome obstacles to treatment (financial challenges, insurance and employment issues, managing daily life, evaluating treatment options, etc.). They work to help patients get the best care possible.

Where can you find an oncology navigator? Some hospitals and private oncology practices have an oncology navigator on staff. Another option is the LIVESTRONG Cancer Navigation Center, which provides free one-on-one support to anyone touched by cancer, regardless of age or type of cancer. The National Coalition of Oncology Nurse Navigators can also help connect patients to a free navigator in their area. Navigators are very helpful in uncovering resources that you may not know about otherwise.

Although I have no regrets in how we managed Alan’s care, I do wish we had fully understood the extent of what we were dealing with at the beginning of our cancer journey. I wish we had understood the importance of the six tips I wrote about above. If you know someone who has been diagnosed with cancer, please pass this article on to them. Knowledge is power… please share the power!

Category: IMPORTANT INFO TO KNOW | Tags: ,
| April 26, 2013
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Organic or Conventional: the 2013 Dirty Dozen & Clean 15

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Exposure to pesticides in foods has been linked to many health conditions including cancer.  After all, it makes sense that we put both into our bodies and on our bodies affect our bodies.  To help guide consumers on what produce they should really try to buy organic (grown without the use of pesticides), the Environmental Working Group (EWG), the nation’s leading environmental health research and advocacy organization, has released its annual Shopper’s Guide to Pesticides in Produce.  This guide does change slightly from year to year.

 

The Dirty Dozen includes the 12 most pesticide-laden foods.  When choosing fruits & veggies listed on the Dirty Dozen (see below for list), try to buy ORGANIC.

2013 Dirty Dozen List

  1. Apples
  2. Strawberries
  3. Grapes
  4. Celery
  5. Peaches
  6. Spinach
  7. Sweet bell peppers
  8. Nectarines
  9. Cucumbers
  10. Potatoes
  11. Cherry tomatoes
  12. Hot peppers

*Kale, collard greens and summer squash should also be purchased as organic.  Click here for more info on why EWG recommends this*

 

The Clean 15 include the 15 least pesticide-laden foods.  If the fruit or veggie is listed on the Clean 15, it’s ok to buy it as non-organic or conventional.

2013 Clean 15 list

  1. Mushrooms
  2. Sweet potatoes
  3. Cantaloupe
  4. Grapefruit
  5. Kiwi
  6. Eggplant
  7. Asparagus
  8. Mangoes
  9. Papayas
  10. Sweet peas – frozen
  11. Cabbage
  12. Avocados
  13. Pineapple
  14. Onions
  15. Corn

 

*  Keep in mind that the information above is based on produce bought at supermarkets. If you shop at farmers markets, ask about their growing practices. Even if what they sell isn’t certified organic, many local farmers use as few pesticides as possible, making the foods on the Dirty Dozen become good choices, even if they aren’t certified organic.

 

*  The EWG also maintains that the health benefits of a diet rich in fruits and vegetables outweigh the risks of pesticide exposure.  So it’s better to eat conventionally-grown produce than not eating fruits and vegetables at all.

 

*  You can download the Shopper’s Guide to Pesticides in Produce app on your smart phone using these links:  for Android phone; for iPhone or iPad; for Windows phone.   

 

 

Category: NUTRITION & RECIPES | Tags: , , , , , ,
| April 24, 2013
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A Little Shirt Can Go A Long Way

These orange "Strength" shirts brought tremendous comfort to rhabdomyosarcoma warrior Brett Johnston. Brett's best friend & cousin and brother started CancerTees.

These orange “Strength” shirts brought tremendous comfort to rhabdomyosarcoma warrior Brett Johnston which is why Brett’s best friend & cousin (Cory Allen) and brother (Scott Johnston) created CancerTees.

 

In May of 2009, Alan had brain surgery.  I remember sitting in the waiting room of MD Anderson with Alan’s parents and his sisters for 8 hours anxiously awaiting news about Alan’s surgery.  There were tons of other people there also waiting for news about their loved one’s surgery.  Although I have tried very hard to put the memory of that day out of my mind, the one thing I will never forget is Darla.

 

I don’t know Darla personally- I’ve never actually met her.  You see, Darla was one of the people also being operated on that day at MD Anderson.  Her 25+ closest friends and family sat near us in the waiting room.  They were eating homemade pickles & fried chicken (which smelled delicious!) and they were all wearing these bright pink shirts that said “Darla is Kicking Cancer’s Ass.”  They were fun and full of energy and they were making the best of a tough situation.  The positivity, the energy, the hope that they brought to the waiting room that day was wonderful… and it gave me a feeling that somehow everything would be ok for both Darla and Alan.

 

Just last week I connected with CancerTees, an organization founded by 2 guys who have been directly touched by sarcoma.  They sell customized t-shirts (like the ones they wore for Darla), hoodies, sweat pants, blankets & bracelets as well as pre-printed ones with sayings like “Cancer Fears Me,” “Survivor” and “Real Men Wear Pink”.

 

Not only we do have the “sarcoma connection” in common, but I LOVE that a percentage of each sale gets donated to a cancer warrior profiled on the CancerTees site.  Each warrior receives $500 to do with what they choose… pay bills, buy a wig, whatever they need.  If you are looking for a shirt to show your support of a loved one battling cancer, check out CancerTees… you’ll be doing a double mitzvah (good deed).

Category: entertainment, patient & caregiver support, RESOURCES & ASSISTANCE, sarcoma | Tags: ,
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