Six years ago today (November 24, 2014), I was diagnosed with a Brain Tumor. It was a total shock as I had no symptoms. Following the CAT Scan in the small community hospital near where I lived, I was admitted to the hospital to wait for the doctor to let me what he was going to do. Looking back I think it is interesting how when you are thrust into the complex world of healthcare – you trust total strangers with your life. No where else do we do this except in the healthcare system.
When I heard the doctor say – I had a brain tumor – everything stopped. I remember thinking what does this mean? What will happen to me? Who do I turn to? I was lucky, I had two friends/colleagues who came to my aide and who helped me and my husband understand what was going on and used their expertise to get me to the University of Miami where I got the care I needed. I know I was fortunate to have two advocates by my side and I truly believe I am alive today due to their help.
I remember asking a friend; how ‘did this’ happen to me? She said you will never get the answer to that question. I think about how I got a Brain Tumor often and still have no answer. It just happened.
I still see my hematologist, Dr. Lossos every 9 months. This is called active surveillance. The tumor that I was diagnosed with can reoccur so being watched is important so if anything does happen, he can catch it early. But so far – so good.
Six years later, I am tumor free. I do have some residual complications from the chemotherapy I received– but I have learned to live with the ambulatory issues as a result of foot drop and nephropathy. I also have cognitive issues that cause me to forget things especially when I am overloaded. I am retired from full time work but I keep myself busy with projects that give me purpose.
I am thankful to so many people – to my husband, my family and friends who were there for me. To the treatment team at the University of Miami – Sylvester Cancer Center. It is a different life than I expected – but I am adapting and feel at peace.
Thank you for reading my story and following me in my Blog – Nurses Advocates. Thank you for your prayers and for your positive thoughts – they have meant the world to me.
I hope you and your families have a Happy Thanksgiving
Stay safe.
Dearest Anne,
i am so grateful for your friendship, support, confidence, and mentoring for the past 8 years.
I look forward to many more years of your endless compassion and contributions in the healthcare arena and opportunities for us to work together.
Please and Blessings,
Cathy F. Bowers
Thanks Cathy! Happy Thanksgiving
Anne, thank you for sharing your story. I was very pleased to meet you 2 years ago and I marvel at how you have adapted your career to your personal circumstances.
Your example of the tremendous value that Nurse Advocates bring to the healthcare journey cannot be stressed enough. When we become the patient we need to know where to turn for the best care and advice.
I have a story that highlighted for me how much those in healthcare need accurate and reliable support when faced with a healthcare challenge. A physician I know was present with many family members for the birth of a grandchild. The obstetrician came out to speak with the husband but the group decided that the physician should be the one to hear the news as he was a physician. After the obstetrician had finished the family members asked him what the obstetrician had said. He replied “I have no idea. I can’t stop thinking about my daughter!”
In these moments when we are overcome by the situation we all need someone who can be impartial and see through the noise and give it to us straight. In my opinion that is why Nurse Advocates are vital to the patient and their loved ones regardless of their background.
Thanks for comment. Amazing story. Thanks for sharing
I remember the day your illness was announced at one of our conferences. I was looking for you and they made an announcement you were in the hospital. I felt a pit in my stomach, that I could not tell you how much of a mentor and role model you have been for me. You have been a shining light for so many of us in the Nurse Advocacy, Case Management field, and
prayed for you everyday. We have remained friends, and I remember the first time you felt good enough to reach out, and my heart was filled with joy. I know how bad this diagnosis could have been. I have cared for patients and family with Brain tumors as we know there are many types But I truly feel being a nurse, and advocate, for your self, and having others who can advocate for you in times when you can not speak are so important. I am so glad to have you in my life, and I love these blogs and keeping this part of the Nursing profession at the forefront of patient care, and so many other issues in life.
Stay safe, wear your masks, wash your hands, and please social distance.
Thank you Ljuca…..
Yes my best friend , a RN , age 78 was devastating a dementia and she and her husband dealt with our health care system in February right before Covid. She was In and out of hospital 5 x with no diagnosis for severe nausea and vomiting and diarrhea. All exams done plus colonoscopy. She had C difficil a year before. The sad part is she was sent home and was found by her husband deceased 4 days later. They did not want an autopsy and her friends have remained with so many questions. Everyone needs an advocate
My neurologist told me: the info is still in your brain. finding the correct information is just “slow recall”.
Congrats on 6 years.
– My husband from Melanomas made it to just under 5 years.
Thanks Barbara..I have heard that also. Happy Thanksgiving to you and your husband!
Anne-
Thank you for reminding us all of the power of gratitude! Your story reminds us of the true power of advocacy as we help light the path through the darkest of times. As a relatively new friend, I hope to spend many more years sharing stories as we grow old together wile apart! Mazel Tov on your 6th year without cancer!!
Oh, Anne,
I never knew this about you! Congratulations on being tumor free for 6 years! That is so incredible!
I appreciate all of your advocacy efforts and for remaining so involved in such a closely knit, yet vast community. You’ve doubtless touched many lives over the years and seem to have to capacity to lead by example and create the desire to achieve loftier goals in countless others.
Happy Thanksgiving!
Julie
Anne – I know you feel like you are the lucky one who survived with good care… and you are. However, I actually see it a bit differently…
WE, as patient advocates, are the lucky ones to still have you playing an important role in our lives… and PATIENTS are the lucky ones to benefit in so many ways by your continued work on their behalf.
It’s all in perspective 🙂 And so MUCH gratitude to consider during this Thanksgiving. Gratitude which includes continued prayers that you remain healthy and tumor free.
Anne – you are an inspiration to many, me included 😊
You are living proof that advocacy is important. Keep inspiring and mentoring. I believe your attitude is a survivor attitude. May we both continue to live and thrive to help others.