Myself and five colleagues each took part in our own ways.  Three members of our team ran in the race and one came in third in his age group.  Two of us passed out water for the runners and walkers.  And one of my colleagues captured everything in photos.  We all handed out gift bags with information about mesothelioma, the dangers of asbestos and our initiative to ban asbestos in the U.S.   We spoke with victims, families, advocates and anyone who wanted to learn more.  It was an amazing event and a good reminder of why we do our work everyday.

I’ve included a couple of photos of the team during the event and I’ll be posting a couple of guest blogs this week from my colleagues.  We are looking forward to participating in more events in the future.

Here are the Run / Walk Details:
When:  7:30am February 14, 2010
Where:  Spanish River Park in Boca Raton ( A1A @ Spanish River Blvd.)
Registration:  Active.com or Accuchiptiming.com

Myself and a team will be attending this event to show our support for this important cause. Victims suffering from mesothelioma and other asbestos-related diseases need increased research for better diagnostic tests and treatment options.  Raising funds through events like this one are a way to assist in these efforts.

We hope to see some of you there!

Visit the website for more detailed information:  http://www.southfloridamilesformeso.com/

Changes in taste and smell may not be life threatening, but you shouldn’t ignore these side effects if they happen to you. If food smells and tastes funny or bad to you, eating can become difficult or unpleasant. This can lead to not eating enough, which leads to weight loss.

Weight loss during treatment isn’t a good thing, and it’s important to do your best to keep your weight stable. Losing weight can worsen side effects, decrease immune function, and make it harder for your body to bounce back between treatments.

Fortunately, there are some steps you can take to keep eating well despite changes in taste and smell. With some creative food choices, you can work around taste changes and get the nutrition you need during mesothelioma treatment.

Tips for Coping with Changes in Smell and Taste

Follow the instructions your health care team gives you for mouth care. Use any mouth care medications or solutions exactly as your doctor or nurse has instructed. Use mouth rinses as prescribed too.

• Try to avoid strong food smells. Smells can kill your appetite and make food taste worse when you do eat. If possible, have others help you prepare food, so you can steer clear of the kitchen and the food smells.
• If you experience a metallic taste when going through mesothelioma treatment, try using plastic utensils to eat.
• If you don’t have mouth sores, try flavoring your foods with tart flavors such as lemon, citrus, vinegar, and pickled items. Avoid these foods and flavors if you do have mouth sores, because they will make the pain worse.
• Try different temperatures of food to see what works best. For example, you may find cold foods such as frozen grapes or watermelon, frozen juices and fruit nectars, cottage cheese, and smoothies or shakes work well. Or you may find that you prefer soups, stews, casseroles and other warm foods. Experiment to find what you like best.
• If things taste too sweet, try sour and tart flavors. For example, try a smoothie made with frozen cranberries.
• Some people find that liquid nutritional supplements taste too sweet. You can cut the sweet taste by combining one-to-two teaspoons of finely ground decaffeinated coffee, ice cubes, and a chocolate or vanilla liquid nutritional in a blender.
• Try rinsing your mouth with cool black or green tea, lightly salted water, or baking soda and water. These liquids can “freshen” and cleanse your taste buds before eating.
• Try flavoring items such as chicken, fish, beef, or pork with savory or sweet spices, such as rosemary, thyme, mint, basil, oregano, or cumin.
• Be open to new foods and flavors. Foods you normally don’t like may taste good to you now. Things you normally like may not be appealing. Try different foods and flavors to find what works best.

Finally, be sure you address other symptoms or side effects that may be contributing to difficulty eating. For example, if you have uncontrolled nausea or vomiting, you need to better manage these symptoms before you’ll be able to eat anything. Keep the lines of communication open with your doctor and ask for help if you need it.

Guidelines for physical fitness for most cancer patients and survivors:

• Aerobic exercise for 20-60 minutes 3-5 times per week  (walking, running, swimming)
• Anabolic exercise for major muscle groups 1-3 times per week  (weight or resistance training)
• Flexibility exercises for major muscle groups 2-3 times per week (stretching, yoga, pilates)

Changes associated with regular exercising include:

Increased-

1. survival rate
2. quality of life
3. muscle mass, strength and power
4. cardiovascular fitness (healthy heart)
5. immune system capacity
6. physical functioning ability
7. flexibility

Decreased-

1. nausea
2. fatigue
3. body fat
4. heart rate
5. blood pressure
6. depression and anxiety
7. psychological and emotional stress

Remember to consult your physician or health care provider.  Start small and work up to increased levels of activity.   Every step helps.

More information on Exercising and Mesothelioma

People will choose different ways to spread awareness and advocacy.  Some will have large events like 5K run/walks, dinners, and bowl-a-thons.  Some will spread the word in their communities by handing out literature and talking about their experiences during festivals and events.   Some will contact their local radio stations to play Warren Zevon songs and talk about mesothelioma.  And others will contact their government representatives to encourage recognition of this day and to introduce legislation for an asbestos ban.  However you choose to participate in Mesothelioma Awareness Day – good luck and continue your great work.  It is the many voices combined that will be heard.

Increased awareness and advocacy about the long term affects of asbestos exposure such as mesothelioma, lung cancer, and other asbestos-related diseases is still needed.  Raising awareness can lead to increased funding for research; which in turn can lead to improved diagnostic and treatment methods.  Ultimately this will benefit those victims currently suffering from mesothelioma, their families, and people who may develop (be diagnosed with) mesothelioma in the future.   Lastly, a ban on asbestos in the US and worldwide could eliminate people suffering from these diseases associated with asbestos exposure.

Every effort helps.  Spread the word about mesothelioma and how is has impacted your life.  Join with others who have similar experiences.  And remember working to increase awareness is important all year long.

Find more information:  Raising Mesothelioma Awareness

Below are a few caregiver tips:

1. Be realistic about this disease and it’s process.  Mesothelioma is different than other cancers and the process is different in each patient.
2. Set realistic goals for yourself and accept help from others.
3. Find someone you trust to talk about your feelings and frustrations with.  Share your experience of caring for someone with mesothelioma and what that means to you.
4. Allow yourself time spent away from your loved one.  You need a break too.
5. Remember taking care of yourself is a necessity, not a luxury.

Talking to and sharing with other caregivers can be helpful because they are dealing with similar issues first hand.  Other caregivers can share what has worked for them.  You can incorporate their ideas and your own into your own coping strategies.

In a past blog I listed the Caregiver’s Bill of Rights – I think reading them is a good reminder to take care of your needs as a caregiver.  You can also find more information on the Caregiver Tips page of this website and on the Caring for the Caregiver page at the National Cancer Institute website.

Possible members of your team:

1. General Medical Doctor (MD) or Primary Care Physician (PCP)  (This is usually your local doctor who provides your general medical care and makes the initial diagnosis.)
2. Oncologist (This doctor specializes in cancer and chemotherapy.)
3. Surgeon (The doctor in charge of any surgical procedures.)
4. Physician’s Assistant (PA) or Nurse Practioner (NP)  (The PA or NP typically work closely with the doctors and will often be your point of contact with the doctor.)
5. Radiologist (Oversees your x-rays, CT scans and MRI’s.)
6. Social Worker (The SW may be assigned to help you with support and resources.  The social worker may connect you to support groups, financial assistance, counseling services, life planning services, hospice and other resources depending on your individual needs.  They may assist you in getting organized and communicating with your medical team.  They may also help you to cope with your diagnosis and treatment.)
7. Nurse Case Manager (A case manager may be assigned to assist with coordination of care.  A case manager will often be a point person between medical providers.  He/she may also be able to help with understanding the medical facility and it’s procedures.  They could also help with outside services such as home health or hospice.)
8. Research Nurse (If you are participating in a clinical trial, you may be assigned a research nurse who will ensure the study requirements are met.)

Each facility works differently, so I encourage my clients to ask questions about who is on their medical team and what roles they play.  Your team may also differ depending on your diagnose and treatment needs.

They also choose to remember Warren Zevon, a talented musician, who passed away from mesothelioma (an asbestos-related cancer) six years ago.  Warren’s son, Jordan Zevon, has been an active advocate and spokesperson for ADAO and an asbestos ban.

View ADAO’s 2 minute slideshow “Asbestos Kills” featuring Warren Zevon’s song “Keep Me in Your Heart”

Signs and symptoms to be aware of:

• shortness of breath
• fatigue
• persistent lower back, shoulder, or chest wall pain
• weight loss (for no apparent reason)
• sputum (mucus and other matter brought up from lungs)
• crackling noise in the lungs
• abdominal swelling
• fluid in the abdominal cavity or in the chest lining
• clubbing of fingers
• discoloration of skin

If you are experiencing symptoms or have questions about your symptoms contact a medical provider.  I also encourage clients to contact a medical provider that has experience working with asbestos-related diseases.

When you and your family are faced with a diagnosis of mesothelioma or other serious illness, remember you are not alone.  You may be able to rely in different family and friends for support.  If you need additional support, I recommend reaching out to a social worker, clinician, medical, or spiritual advisor during this challenging time.

Read the article:  When Patient’s Don’t Want to Know