2. Decide What's Important to You

How do you want to live your life with brain cancer? Are you willing to take active measures to fight the disease? There's no right or wrong way, but make conscious and knowing decisions so you understand the tradeoffs.

How you fight is different for everyone. Carefully assess what matters most to you. Some may want to fight with standard treatments, some with alternative therapies, some with a combination of the two. There may be a time when you need to consider whether you want a battle at the expense of your quality of life. Get advice from friends and family, but in the end it is your call. Recognize that it is okay to change your mind – it is your health and your decision.

“Enjoy yourself, enjoy your family. Just go out there and do everything you wanted to do. Don’t look back and say … ‘Oh, I wish I would have done that. Why didn’t I do that?’ Just go out and do it. If you want to do something, do it.” –Melanie Kabo, brain tumor fighter

Pediatric patients have different rights to decide their own care than adults do. While most decision-making rights are up to parents, many states have a mature minor exception for minors who are judged competent to make their own medical decisions.[1] Minors can also seek emancipation in order to make their own medical decisions.[2] Children’s rights often trump parental rights when the child wants a standard treatment and their parents don’t, but parents tend to trump children when the minor wants to do anything but the standard course of treatment.

A Positive Approach to Life

Surround yourself with positive stories of survivorship and successful treatment. There is no benefit to putting anything in your mind that is not uplifting. Seek out hopeful books, people, and doctors. Make a conscious effort to remove anything stressful or negative from your life. Think about what makes you feel good so that you can feel the best you can feel. Don’t let statistics get you down. Though there are median survival rates, there are also people who have beaten those odds and live years after diagnosis.

“You are going to instantly want to go back to ‘before my brain tumor diagnosis.’ There is no going back, and it is better to concentrate on getting well, healing, and moving forward. There are more and more people everyday who beat brain cancer, and you can be one of them too.” – Leslie Danelian, brain tumor fighter

A brain tumor can make people feel like they have lost control of their life, so focusing on the things you do have control over, such as diet and attitude, will make you feel better and fight better. Set short-term goals for yourself. This is may be a good time to try a new hobby or get back in touch with someone. It will make you feel good to accomplish a goal.[3]

“It may sound strange, but some feel that their personal lives change for the better after a major diagnosis such as a brain tumor. It does make people re-evaluate their lives, often in a much more positive direction. If you use every minute of the day in a valuable and meaningful manner, there is much to hope for and look forward to.”[4]

Your sense of calm, comfort and well-being is paramount to your treatment. Choose to surround yourself with uplifting people, books, music and entertainment. Humor therapy is an actual science.[5] If you have a faith tradition, lean on it – this is what your faith is for. Make sure that key people in your life know what your beliefs and wishes are. This will be critical for people to respect your beliefs.

If you go into remission, try not to focus on the possibility of recurrence. There is almost nothing you can do to control this, so it’s not worth fixating on. Focus on what you can do: making healthy life choices and enjoying your life. Supporting other patients can also help you feel fulfilled.

“Not to sound at all trite or cliché, it is true that we need to remind ourselves a lot that all of our cancers and other ailments are not what define us, and we can live with our disease.” –Dennis

Many people find joy in helping others who are going through the disease, or in raising money for brain cancer research. ABC2 offers opportunities to get involved by joining an event, organizing an event, or personal fundraising.

Diet & Lifestyle

Consider your lifestyle. Ask yourself if each thing you do is good for your body. If you smoke, quit. Drink less. Exercise to the extent of your ability during treatment, even if it’s just walking around the block. Remember to think about the health of your whole body, not just about fighting your cancer.

Critically evaluate your diet and consider a ketogenic or vegan/vegetarian diet. A ketogenic diet[glossary] is a diet high in fats, adequate in proteins, and low in carbohydrates. Because it is low in carbohydrates, the body can’t rely on glucose as an energy source and it starts converting fats into ketones for energy. Ketosis, an elevated amount of ketones in the blood, has been proven to reduce the frequency of epileptic seizure. New research shows that this glucose deprivation could help to slow brain tumor growth.[6] The effectiveness has been shown to vary by tumor type, and although such a diet can be fairly restrictive, it is an aspect of your health that you can have control of.

People who eat vegan diets have been shown to be less likely to develop cancer than vegetarians, and vegetarians are less likely to develop cancer than omnivores.[7] Many people report feeling more energetic and healthy on vegetarian or vegan diets.

Getting Help

You may also need to consider your living situation. If you do not already live with someone, you might consider moving in with a family member or friend or even having someone move in with you. You should also make sure that you have some people in your life who can drive you to appointments, because many treatments will make it impossible for you to drive.

For your daily needs, take advantage of delivery services such as Amazon Prime and Amazon Pantry, grocery store delivery services like Peapod, Safeway Delivery, delivery apps such as Instacart or Postmates, and restaurant take-out.[8] Consider getting a cleaning service for your house or paying a neighborhood kid to help out with household chores.[9] In your home you might want to install handrails and brightly colored tape on stairs if you are having trouble with balance and coordination.

With family and friends, figure out the best way to get help with your care if needed. Certified nurses can be hired to give care at home, as well as nursing students and caregivers without formal medical training. Contact your local hospital to ask for resources about additional support.

Links

The Median Isn’t The Message an essay by Dr. Stephen Gould about statistics and cancer diagnoses

Corporate Angel Network helps cancer patients get free flights on corporate jets to access the best treatment

TakeTheFight.Org pairs top University students one-on-one with cancer patients to help patients fight more efficiently.

More information about Pediatric Medical Rights

Video: Standard of care vs experimental therapy

National Coalition for Cancer Survivorship is an advocacy groups that represents cancer patients and survivors in efforts to improve their quality of care and quality of life after diagnosis.

Continue Reading

10 Steps: Living with Brain Cancer

Sources

[1] Doriane Lambelet Coleman and Philip M. Rosoff,“The Legal Authority of Mature Minors to Consent to General Medical Treatment,” Pediatrics, March 2013.

[2] “Emancipation of Minors,” Legal Information Institute, Cornell University Law School, http://www.law.cornell.edu/wex/emancipation_of_minors.

[3] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.

[4] “About Brain Tumors,” American Brain Tumor Association, 2012.

[5] “Frankly Speaking About Brain Tumors,” Cancer Support Community, National Brain Tumor Society, ABC2 and the Musella Foundation, 2013.

[6] Angela M. Poff et al., “The Ketogenic Diet and Hyperbaric Oxygen Therapy Prolong Survival in Mice with Systemic Metastatic Cancer,” PLoS One, 2013.

[7] Yessenia Tanamango-Bartley et al., “Vegetarian Diets and the Incidence of Cancer in Low-Risk Population,” Cancer Epidemiology, Biomarkers & Prevention, 2012.

[8] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.

[9] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.