Roberta's Story


      A few days ago my daughter texted a request to me.  She set up a blog as a compendium for the Facebook LFS Support Group and she wants to feature stories of people's journeys with LFS.  She wanted to know if I would write the first one.  I was caught off guard.  I texted back that I would consider it, but have always felt a bit of an outsider.  By that I mean I don't know how it feels to be LFS positive or to have cancer.  I did not want to write something that people would read and disregard because my experience with LFS is from a very different angle.  My daughter responded "that's why your side is important, LFS affects everyone in the family.  I know there are others who feel the way you do.  You've seen a lot over the years--lessons learned, how it changes you and the family.  How you go on.  Just write what you feel.  All I ask is that you leave people on a positive note. "
      My daughter's request initially caused some angst.  I am not gifted with  writing like she is.  With my background as a nurse, I many times fall back on a clinical approach when I describe my journey with LFS.  That is because if I write clinically, I can pull myself away from the emotion.  To write non-clinically I must feel and remember and relive some of the worst times of my life.  Some of those times over the years I have chosen to forget. 
      I had just completed a scrapbook for my daughter's Mother's Day gift.  During the making of that book I made a trip down memory lane.  I tried to keep the memories and photos that I displayed as happy memories of happy times.  I cannot help but be proud of the young woman and mother that my daughter has become. 
      My daughter's request comes at a time of year that is still very difficult for me.  I know she has viewed me as a "glass half full"  type of individual.  I don't view myself that way.    I am pragmatic.  I also display my emotions easily when issues are not related to my work.  The month of May means Mother's Day.  May is the month when I lost my son and husband to brain tumors.  May is Brain Tumor Awareness Month.  May is the month that my daughter had surgery for two kinds of cancer.  I can't help but reflect during the month of May.  For years I have always felt guilty for not being able to do more to protect my son or do more to prevent him or my husband from suffering from brain tumors.  I don't like May. It has taken years for me to just get through the month.  I have finally been able to forgive myself for what I felt were my own inadequacies in dealing with the illnesses and deaths of my son and husband.  I had a friend once recommend that I be gentle with myself.  It took a long time to deal with the anger, sadness, the frustrations,  and the aloneness that I felt through their illnesses.    It also took a long time for me to forgive myself for not always being able to provide what my daughter needed during that time.  I did try my best.  Looking back she had to grow up much before her time.  I relied a great deal on her especially when my husband was ill and I needed to continue to work.    Yes,  I never quite felt like a good mom or wife during that time.  
      My daughter's request has caused me to travel into the past and into a time of great physical and emotional upheaval in our family.  Instead of gathering picture albums as I did for her Mother's Day scrapbook, I pulled out and dusted off two personal journals.  One was dated 1991 and the other 1993.     I read through each one.  That is the first time I have done that since they were written.  That's over twenty years and while reading I felt as if I was re-living the experiences I documented.  There are times when it feels like I can never forget and there are times I guess I have been successful in forgetting some of the pain. 
      In 1990 when my son was diagnosed with a brain tumor, I was aware of multiple cancers on my husband's side of the family.  His dad had died in the late 1950's of a brain tumor.  In the 1980's my husband had two sisters who were diagnosed with cancer.  His oldest sister died.  Then in the 1990's my nephew, son and husband were diagnosed with brain tumors.  My husband's brother and another sister were also diagnosed with different cancers.  My youngest sister-in-law was again diagnosed with a new cancer.  I admired how strong my mother-in-law was during that time because all of her remaining four children and two of her grandchildren were suffering with some type of cancer.  The one thing she used to say that stuck with me was " the good Lord never gives us more than we can handle."   We are so fortunate to still have her in our lives and I will always be grateful for the example of courage and strength she has given to me.
      How does a person describe how it feels to be dealing with not just one family member with cancer but multiple family members who all have cancer?  My husband's parents and mine had been best friends.  He and I and his brother and sisters all grew up together.  It was during this time that I tried so hard to research treatments.  My husband and I both worked.  Whether we wanted to or not, we needed to continue to work.  Luckily we had medical insurance.  Financial concerns when one member of a family is sick are tough.  With multiple family members affected and flights across country and long distance phone calls, finances  became more strained.  I felt torn in so many directions.  There was not enough time to do the amount of research needed to find the right medical information or treatments.  There was not enough time just to spend with family.  There was little known about hereditary disposition to cancer, yet we were experiencing first hand this devastating syndrome we now call Li- Fraumeni Syndrome.
      My younger sister-in-law was the first to  learn of the P53 genetic mutation.  It wasn't until my husband was diagnosed with cancer that Li-Fraumeni became a household term.  My son died before we knew enough to have him tested but then we assumed there was a genetic tie-in.  My husband agreed to testing and his result was positive.  He really knew this when he was diagnosed,  but wanted the test to confirm so we would be able to guide my daughter into the future.  My husband had spoken with Dr. Li and I had also.  We learned that there was little known about this mutation and that each child had a 50/50 chance of inheriting it.  We didn't know any other families who were similarly affected. My son, nephew , and husband and another of my sister-in-laws all died within years of each other.  The grief was suffocating.  There were times when I wished I was not the survivor.
      We as a family have lost so much.  Now there was just  my daughter and myself.   The rest of  our family lived out of state.  We needed time to grieve and to heal.  I learned that my daughter and I were two individuals dealing with deaths and illness in different ways.  We were learning how to pick up the pieces and go on a day at a time.  No two people handle cancer and death in the same way.  I had a lot of fear then.  Fear of keeping things going.  Fear of losing my income, and worst of all the fear that  my daughter might have LFS.  I tried to gather as much information on LFS as possible.  I contacted Dr. Li and Dr. Judy Garber at Dana-Farber during my husband's illness.  I received information about the National Familial Brain Tumor Registry, which was all that existed at that time.  There were no support groups- except for one out of University of Colorado Hospital in Denver.  My husband hated the idea and we only went to a couple of meetings.  Afterwards I kept in touch with one of the other wives but once my husband died, we no longer communicated.  I obtained a copy of a video which was distributed by Dana-Farber as part of the Program for Predictive Testing.  Dana-Farber offered to cover a trip there for my daughter and myself if we wished to have her tested and for counseling.  I gave my daughter a choice at the time.  She was aware that she had a 50/50 chance of inheriting the mutation.  She told me that she didn't care to be tested because there was nothing available once the test was done.  She also said that she wanted to live life to the fullest.  She also told me at the time that if she ever decided to get married and have children she might choose to be tested then.  Years later when I asked her,  she did not remember having that conversation with me.  My husband and I had discussed this with my daughter.    We decided that at her age(18) we wanted her to have the right to choose what information she did and did not want.  There were times when I wanted to know for purely selfish reasons.  I did respect her decision not to be tested because she was the person who would have to live with her decision.
      I remember wanting life to be normal.  Time went on and years passed.  Life had resumed and a new normal took shape.  My daughter married and had four children.  I remember trying to forget about LFS and succeeded occasionally except with the birth of each of my grandchildren.  I recall holding my breath each time I learned of each pregnancy.  To this day I know my daughter thinks it was because I didn't want her to have more children, but that wasn't the case.  I held my breath because I was afraid of losing her or them to LFS.  I had experienced the deaths of my son and husband so differently than she had.  I could not conceive of any of them having cancer or possibly dying.  I wasn't sure that I would have the strength it would take to support them if P53 invaded our lives again.  I prayed a lot and wished and hoped that my daughter was P53 negative.
      It was 2008 when I received the call from my daughter that my granddaughter who was 3 1/2 at the time was diagnosed with a tumor.  Subsequently, they also identified a second type of cancer.  During my granddaughter's  treatment my daughter chose to be tested for the P53 gene mutation along with all of the other children.  Of course she had suspected with the diagnosis of her daughter that she was positive.  The test results came back and my daughter and all my grandchildren are P53 positive.  Again, this was an extremely tough time.  My daughter lives half way around the world from me and I could not be there like I would have wanted.  My granddaughter survived 9 months of chemo and is clear according to her most recent PET scan.  She is a survivor.
      Last year, my daughter was diagnosed with two kinds of cancer.  She had multiple surgeries and being a survivor,  she is doing well today.  I continue to hold my breath and thank God daily for her and her children and my son-in-law.  She continues to fight for those with LFS and advocate for screening protocols.   Years ago I encouraged her to write.  I thought that she would go into journalism.  She chose to study Molecular, Cellular and Developmental Biology with a minor in Biochemistry.  She received her Bachelor of Arts from CU and planned to go into genetic counseling.  I believe she is headed in the right direction to reach those goals and more.  She is an excellent writer and I love to read her blogs.  She is a researcher at heart and I am astounded at the amount of information on LFS and Adrenal insufficiency and Diabetes that she has gathered.  I am so proud of the woman and mother she has become.
      LFS has caused us great pain, but at the same time has taught us great lessons.  One of those lessons is that some things are out of our control.  Life is to be lived and enjoyed each  and every moment of every day.  Family and friends are to be held closer and cherished more.  Take the time to stop and tell someone how much you love them or how much you care.   Don't waste time on what you have lost but take the time to be grateful for what you have.  I felt guilty for a long time for not being able to do more to help support others with LFS.  Now I know that to everything there is a season, and a time to every purpose under heaven. (Ecclesiastes (3:1).  My purpose was to be a wife and a mother in a family challenged with LFS.   I am fortunate to be the mother of two of the most courageous children in this world.  My son displayed quiet strength and courage in his life and death.  My daughter started a legacy for her brother and her father.  She has been one of the Co-Founders of the LFSA and the LFS Group on Facebook.   I am so proud to call myself her mother and I am honored to be a part of this very special family of very special people with LFS.

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