Don't Overshare Your Cancer Journey

     When faced with cancer and all of the stress and tough decisions that come along with a diagnosis, you want to know what family and friends think, but too much input can be harmful and influence you against your own beliefs and in some situations shame you or make you feel unworthy of the decision making process.  Sharing all of the details in your medical life may feel empowering and a way of releasing stress and worry, but you might be oversharing. Sometimes it is hard to know if what you are sharing is enough or too much.         

     Take stock of the people in your life that you are the most open with about your cancer and your personal life.  Who are they?  Your siblings, parents, coworkers, friends?  When you talk to them about your choices and ask them about whether to do chemotherapy or radiation, to remove one or both breasts, to seek alternative medicines and treatments, are they really supporting you or do they have their own agenda?  If you have someone that is always argumentative, won't listen and gives you advice that doesn't align with your treatment or beliefs, you really don't have their support.  Support from your inner circle should include listening without judgement and respecting your decisions.

     As a person dealing with any stage of cancer, it is alright to choose a couple people in your life that you trust and that support you unconditionally.  Stop telling everyone your business, especially if it incites arguments or negativity.  If you constantly bump up against the same reaction from someone, you are oversharing and you need to take a different approach with them.  If someone that is not supporting you asks how you are doing, tell them you are trying to get some space from always talking about your cancer and change the subject.  You don't have to tell everyone your business.

     If you need someone outside your inner circle of friends and family to listen to your dilemmas with treatment, your fear of side effects or you just want to get it all out, find a cancer center in your area.  It is so freeing to voice your concerns with other people that know exactly what you are going through.  Sitting in a room with other people in varying stages of their cancer can be so enlightening and comforting. 

     When I was in the middle of breast cancer treatment, I realized that only a handful of people were there for me all the time and I could rely on them and share my journey without fear of criticism.  I bumped up against several other people that did not agree with my choice to do chemotherapy and actually told me that it would kill me.  They got dumped out of my inner circle and I remained polite with them, but no longer talked about my cancer in detail.  Do you have someone that is not supporting you, but you keep telling them everything?  You don't have to do that.  Stop oversharing with those that are not supportive. Choose to keep yourself in a place that is filled with positive people that reflect back love, kindness and understanding. You deserve that.  

Cancer & Loss

I am 1 year and 1 month out from my breast cancer diagnosis and the losses are adding up exponentially. I have lost both of my breasts, I have lost my business, I have lost my hair, eyebrows & eyelashes, I have lost my mother and grandmother to cancer, I have lost numerous friendships, I have lost my identity, I have lost a whole year of my life, I have lost my peace of mind, I have lost thousands of tears, I have lost numerous friends that did not survive their cancer...I have lost so very much that I could just keep going, page after page, of all of the loss that has come as a result of my breast cancer diagnosis in November 2015. But I don't want to focus on all of the loss, I want to focus on what I have gained.

As I write my book about my breast cancer journey, it reminds me that with all of the pain and loss I have experienced, I have also been rewarded with so much. I have my life. I have the distinct sense that death is always near and can come at anytime and I am no longer afraid of it or so I tell myself. I have accepted that I will die, maybe from breast cancer, I don't know, and I don't need to know. I will stay in the present moment as often as I can, pulling myself out of the grief that comes with a cancer journey. I will cherish all of the moments I spend with my husband and son and all of my family and friends. I will smile and feel joy and cry when I feel pain. I will live as fully as I can for as long as I am here.

I will spend time with other women that have cancer and share with them all of the lessons I have learned on this cancer journey. I will honor myself and my loss. I will also honor you and your losses to cancer. I am here for you, to support you and your loved ones with cancer. I will also honor my limitations. I cannot bring a cure for cancer, but I can bring love and compassion. I will continue to write my book and share all of the intimate photos of my breasts that my husband Wiley took on our journey, from beginning to end, if it will help even one woman make peace with the changes that breast cancer inflicts. I will remember my friends that fought cancer so bravely and lost. I will hug my family and friends and tell them how much I love them this holiday season and I encourage you to do the same. Life is short and so precious. Enjoy every moment of this gift of life that you have been given.  Happy Holidays!

 

Setting Boundaries

Learning how to set boundaries when you have cancer is so important. Cancer takes a toll not only on the body, but the mind. It sucks the energy out of you physically and mentally and unless you have been diagnosed with cancer or a serious, life threatening illness, it is very hard to understand what that person is really going through. If you have cancer, you must be realistic about what you can and cannot do. You have to protect yourself as your immune system can be compromised by treatment and you need to focus on healing which includes a lot of downtime.

If you have cancer, some boundaries that you might consider setting include:                            

  1. Saying NO to events where there will be large crowds of people.
  2. Saying NO to things that obligate you to a task, like carpooling kids to school everyday.
  3. Saying NO to lots of visitors at one time.
  4. Saying NO to hosting people at your house.  
  5. Saying NO to anything that involves travel while you are in treatment or recovering.

As a patient you will need to realistically weigh requests for your time and effort and say NO when anything feels like a burden. Be gentle with yourself and accept your limitations.   

If you know someone with cancer, you need to be very mindful of any requests that you are making on them. You need to realize that they may want to participate in an event or task, but they are not well enough to participate and don't know how to say NO. Some boundaries that you may want to consider with a friend or family member that has cancer include:                      

  1. Don't ask your friend or family member for any favors or to complete any tasks for you.
  2. Don't invite them to an event unless you are willing to accept that they may not attend.
  3. Don't guilt someone with cancer if they say NO, be understanding and compassionate.
  4. Don't invite yourself to visit a person with cancer for lengthy amounts of time.
  5. Don't give treatment advice that is contrary to what they have decided, even if you don't agree with their treatment. 

Setting boundaries in our lives is difficult even without a serious illness like cancer, but we all need to do it. Whether you are the patient or not, cancer will require you to slow down and really think about what you are asking or being asked to do.

Check out my next blog: Cancer and Loss 

Compassion and Cancer

My year long breast cancer journey has taught me so many lessons, but one of the most important lessons I have gained is one in compassion.  When you are facing the fear of your own death, it is easy to become angry, depressed, closed off from your own feelings and from those that love you.  I have had to reach deep and find compassion for myself and my journey.  My friend and Kingston's Candy Co. landlord advised me early on "to be gentle with myself".  That advice has really served me well and I have drawn on it in moments of fear and desperation.

The definition of compassion is a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering.  Having gone through a total double mastectomy, two breast reconstruction surgeries, three months of agonizing chemotherapy treatments, countless bad reactions to medicines, and a year of roller coaster emotions, developing compassion for myself was a priority.  Cancer has given me a strong sense of wanting to provide women with cancer that same compassion and hope I had to learn for myself.  There are countless men and women right now facing the same battle and they need my compassion and yours.

It is not always easy to be compassionate.  I think it will be a life long pursuit for me.  The recent elections touched off strong emotions and I am not the only one in the country that felt a deep sense of loss and fear.  I have had to change the way I look at the election, the country, and the people in it, just as I had to change the way I looked at my body, my identity and my sense of loss from cancer.  I am human, just like you, and I am not perfect, but with or without cancer we all need to develop our sense of compassion toward those around us, especially those that we do not understand or feel the least compassionate towards.  There is no such thing as too much compassion.

I spent a morning recently at The Lavender Inn here in Ojai, with eight brave women who all have cancer and were attending the INNcourage cancer retreat.  The women were all so brave and loving toward me, I felt so much compassion for each of their stories and so grateful to be welcomed into their group.  I brought each one of them a Survival Satchel and I was nervous, because they were the first group of women to receive them.  It felt a little like Christmas as the women pulled items out of the satchels and I explained who had made or donated the item. These women are all fighting for their lives, but they had compassion for my journey and they were so grateful for all the gifts they were being given.  I left them with a big smile on my face, so grateful to everyone that had donated to Survival Satchels and feeling energized with the goal to do it all again in February at the next INNcourage cancer retreat.  

Compassion is so necessary right now, so I encourage you to first practice compassion with yourself.  You deserve it, then expand your compassion outwards to those you know and love, then reach just a little deeper and expand your compassion to those you don't know.  Just imagine what kind of world we could have if compassion was practiced in small ways every single day.

Stay tuned for my next Blog:  Setting Boundaries...

 

Making a cancer binder with your medical records...

I feel so grateful to be living in a town that has a cancer support center.  Ojai Cares provides their services to cancer patients and their families free of charge.  They have been a wealth of information and education for me on my breast cancer journey.  One of the very first things that was suggested to me by the director, Susan Kapadia, at Ojai Cares was putting together a binder with all of my cancer information and medical records.  At the time, I wasn't sure why I would need such a thing, but as the number of appointments, tests and specialists increased, I realized that it was an absolute must have.

I used one of my son's old school binders and created tabs for each doctor or specialist.  I also created tabs for insurance information, education material I was given, business cards I received and all test results.  The binder combines tabs, plastic sleeves and pockets.  At every single appointment, I ask for copies of the results I received that day along with any medical notes or permanent information.  All of that information gets filed right into the appropriate section and is there if I need to look something up.  

On a recent appointment to a new specialist, I found out after checking in, that none of my records had been sent over by my referring doctor as promised. I had waited weeks to get into this very busy and popular specialist.  Without my medical records, the specialist would not be able to see me and I would have to reschedule the appointment.  Luckily, I had brought my medical binder with me.  I ran to my car and got it.  The receptionist was able to make copies of the test results and other records, and my appointment went ahead as scheduled.  I got the information I needed that day to go back to my oncologist to make some very important treatment decisions.

I highly recommend putting together a medical binder that you can take along to every appointment.  Having an organized medical binder at your disposal will also help to relieve fears and remind you of information that you may have forgotten.  My 2 inch binder is stuffed full with every single piece of my year long breast cancer journey.  It is all in there and I use it frequently.

Stay tuned next Monday for my next blog:  Compassion and Cancer