dianetavegia wrote:I can't ever take FOLFOX again and probably others due to the severe CNS damage. It took me a full 2 years to calm down quite a bit from my health anxiety. I went back at tax time and counted how many times I went to the doctor (especially walk in clinics) the 2nd year after my HR and it was 82 times! Only 3 times out of 82 did I have something wrong with me! Two UTI's and the real flu.
I think your true quest is to find a level of monitoring and surveillance that will allow you to live your best life without the heavy burden of anxiety that engulfs you.
When my brother was 15 years of age, he was unexpectedly diagnosed with a Grade IV glioblastoma multiforma - a highly malignant brain tumor. The year was 1984. Recognize that there were no advanced imaging techniques (no CT scans, no MRIs, no PET scans) in 1984. Neurosurgical techniques were simplistic and crude in comparison with today's advanced surgical capabilities. Chemotherapy was not able to cross the blood brain barrier. My brother underwent incomplete surgical debunking of a wispy, spider-web type tumor that occupied a tangerine-sized portion of his left parietal-temoral lobe. Tissue pathology was forwarded to Memorial Sloan Kettering, Stanford University, and MD Anderson. Physicians had nothing to offer. My parents were advised that my brother's prognosis was terminal with a 3-4 month time horizon.
My brother come home from the hospital after a 26 day stay due complications of leakage of cerebrospinal fluid. As a family, we prepared ourselves for what seemed to be a horrible inevitable. We hunkered down. And waited.
This story has a "happy" ending. My brother did not die. My brother survived a Grade IV glioblastoma multiforma diagnosis, repeatedly confirmed by tumor tissue samples from the debunking surgery. There was full agreement among each of the leading medical centers of the tumor's histology. Current imaging shows the titanium clips in his brain and an empty/cavernous area previously occupied by the tumor.
That my brother is alive cannot be explained by medical science. Physicians theorize that his immune system unilaterally identified and eradicated the tumor. My brother was his own immunotherapy before the naming of the emerging science that we see today.
My brother will tell you that he never felt that he was going to die. He is very quietly mannered in his discussion about his cancer and survival.
He is not without permanent deficits from the tumor's presence. He has uncontrolled grand mal seizures and right-sided spasticity that affects his gross and fine motor coordination.
My brother does not agonize about follow-up scans and the thread of a recurrence. He maintains a philosophy that he is living time that he was not otherwise projected to actualize. He lives his life as a genuine gift. Whatever his is actual fate may ultimately be, that he is living today was never a certainty. He has traveled the world - from the Antarctic to the North Pole, from South America to St. Petersburg, Russia.
My brother deeply influenced my own life.
I became a physical therapist after watching physical therapy transform his weakened physical frame. As a physical therapist, I specialized in neurological rehabilitation. I have worked with severe head and spinal cord injury - individuals who have been robbed of the ability to walk, who can no longer scratch their nose when it itches, incontinent of bowel and bladder function. I have worked with individuals with progressive neurological disorders - ALS, MS, Parkinson's. Observing the horror of people trapped in failing physical bodies with intact cognitive thinking skills and awareness. The cruelty of disease quite evident.
My own life's trajectory has been troubled by loss of health. A former marathon runner and work-a-holic, I am a shell of my former self. I have been on Palliative Care for 4 years as my health insidiously withers away. I experienced a profound near-death experience when my intestine perforated. The near-death experience has deeply affected my views on death and
dying.
My fear is not about dying. My fear is about losing my functional independence and living a life with essential no/low quality.
Less do I want quantity of life, less do I want a long life. More do I want quality to my life, more do I want a meaningful and
engaging life.
I life a simple life limited by fragile health. I depend on a hefty cocktail of narcotics to keep severe pain at bay. It requires tremendous effort to retain the ability to walk. Going out to a movie or dinner are memories of a past time. Living with compromised health is not restful, it is exhausting.
In this narrative, Diane, my advice to you is to live your best life now, in the present.
While you are rightfully concerned about a cancer recurrence, it may be that a health condition totally off of your radar becomes an active problem in the years ahead.
In worrying about a cancer recurrence, you are giving cancer power over your life.
Talk with your new primary care physician about what YOU need in terms of survelliance to give you peace of mind and power
over your life. You deserve to have peace of mind. Ask yourself: "What will give ME peace of mind?" Knowing that you may never be 100% anxiety free, what type of surveillance and what frequency of surveillance do You need? You are your own
unique person and your needs may be different than that recommended by a statistical study.
Best to you in your decision,
- Karen -
If your current oncologist is as insensitive as you mention, find a new one. There is no reason to stay with someone who injects negative power into your life.
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.