My journey - battling lymphoma

Recently I celebrated my 46th birthday. I love celebrating birthdays! Then I participated as a co-captain for our local "Quabog" Relay For Life and the Pack 57 Rocks! Cub Scout Team. This was the time frame that I had discovered an uneasiness in my stomach and growth in my spleen and stomach. After weeks of monitoring, my husband Steve took me to the doctor who felt the lumps and ordered a CT scan. The CT scan showed a massive area, my spleen enlarged to twice its size and an additional growth lower in my stomach. Next was the localized CT guided biopsy and subsequent PET scan. The biopsy showed positive for lymphoma and most likely Diffuse Large B-cell Lymphoma.

This is my online journal sharing my experience through battling this cancer that has abruptly entered my life for no apparent reason. The story is documented here if you want to start from the beginning, you can check the archives on the side bar.

As a top competitive master athlete this year winning my age group at the Marine Corps Marathon and placing 3rd in the New England Trail Running Championship I have been truly excited with my results of late and am a truly driven athlete. Driven by goals.... my goal right now.... to beat this "thing"!

Saturday, September 4, 2010

Have hope. Find hope. Take control.

This past week someone close to our family was diagnosed with cancer.  Where do you start?  How do you advise someone --- cancer is so big --- so many diagnoses, so many treatments, so many different types of insurance and lack of insurance.  Working for the American Cancer Society I would advise that they should call the 800-ACS-1234 (800-227-2345) number and our call center is equipped to handle all calls in all situations and can direct you to an answer that meets your needs at the time.  They are amazing.  I have visited the National Call Center 3 times in my 15 years to see the training, the Quitline and how many calls they handle 365 days / 24 hours a day.  The other ultimate resource for answers is which has just been changed for easier navigation and updated --- these are resources for everyone, all the time and are so phenomenal -- you need to see it for yourself.  

But - when you actually have cancer, you don't really know what you need to know, what you need to look out for or what you need to ask.  So many people face this disease alone, without a true caregiver or someone to help and guide them along the way.  I am so fortunate with my background in the Society and having such an incredible supportive husband, colleagues, friends and family -- well I am set up for success in so many aspects.  But most are not.  Family will be there and try to help - and yet, they may not know where to start.  

Ask - what type of cancer, what is the diagnosis, the prognosis and be sure that you get the best care.  Find out what your insurance allows to be aware of the financial burden and be sure that you get all that is "covered" for your plan and you follow the guidelines that they have set so that you get the maximum benefit without the stress of trying to back track with rebuttals and more paperwork.  For someone who never gets sick this was huge for me to understand the process.  Call the insurance company, get to know your case worker and nurse if they assign you one.  Make sure that they are getting the information they need to be able to move forward, especially when you are trying to make this all happen fast.  Keep track of what is approved, denied, and paid.  Then keep track of any bills that may come in after.  This has been so hard for me -- I have a notebook and was real good at first, but keeping it all organized it tough.  Be sure that when you go to a doctor "out of plan" that it is approved and if possible have the letter in hand of what from that treatment is approved.  It takes the stress out later -- believe me.  

Bottom line -- this is my advice ...
1. Take control of your care.  Be sure you are happy with your doctor and feel that you are getting the right care and direction.  Hopefully have someone at your side to help you!
2. Get a second opinion.  Get the right diagnosis.  Get all the tests done early and wait for a diagnosis and not jump into a treatment plan.  Once they start it is more difficult to make any changes if at all possible. 
3. Clinical trials?  If there is a clinical trial available you need to get some phone calls in early to see if you are a candidate.  This needs to be decided right away.  Not all cases of cancer have clinical trials associated with them.  But if you are a candidate this is another source of HOPE.
4. Find and have hope.  Seek support and guidance.  Ask for help.  You are not alone.

Celebrate you -- celebrate your friends and your family.  Live each day to the fullest. Care for others that care for you.  Be a friend. Celebrate your community.  Celebrate life.

Remember that every day is a blessing.  Remember those you may have lost to cancer or who have had influence on your life and your health.    

Fight Back.  Take charge of your health.  Make the first step today.  Be healthy.  Get started on an exercise plan  Make a difference in your community.  Relay For Life is a great support system...  there are more than 5000 events nationwide.  

Fight Back. 

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