One rainy spring morning in Paris, I woke up with flu-like symptoms and decided to take a "me" day from work. Little did I know, I would never return. Three months later -- exactly one year after graduating from college -- I found myself in the oncology ward of a New York City hospital, undergoing my first course of chemotherapy.
Back in France, my doctor had attributed my symptoms to burnout syndrome, an umbrella diagnosis that might well apply to any sleep-deprived college grad in her first year out in the "real world." He sent me home to the U.S. with orders to rest. But when I continued to feel unwell, I did the thing many doctors tell you not to do: I typed my symptoms into Google. There were hundreds of matching hits but the word cancer jumped off the screen. I can remember the momentary chill I felt in seeing that word. But I promptly dismissed it: life-threatening illnesses, after all, only happen to other people.
My Internet search proved ominous at my next doctor's visit: "Acute Myeloid Leukemia," my doctor said, his voice quavering. I could not stop crying. Most people, while peripherally aware of their mortality, are unprepared to receive direct word of it from a man in a white coat. In the time it took the doctor to utter those three words, my life felt like a house of cards, ready to collapse on my dreams for the future. I was 22 years old. My friends were busy starting their lives, and I was worried that mine might end before it had really begun.
Everyone told me how difficult chemotherapy would be. The doctors and nurses prepared me for what to expect, gave me pamphlets explaining the disease and its treatment, and guided me to websites and support groups. I learned to accept that when it comes to the medical treatment itself, the role of the patient is limited: you have no choice but to trust the wisdom and instruction of the doctors and hope for the best.
Today, as I prepare for a bone marrow transplant, I've learned that my biggest challenge might not be physical. It is enduring the boredom, despair, and isolation of being sick and confined to a bed for an indeterminate length of time.
There have been remarkable advances in cancer treatment over the past few decades, but there is no magic pill to cure the emotional distress of illness. In this regard, I have discovered that it is up to me to help myself.
Through much trial and error, I am creating a roadmap for emotional health and spiritual well-being. The way I spend these long hours in bed holds remarkable power over the way I feel, both physically and psychologically. In the hope of helping the many others who share the struggle of a long and uncertain convalescence, I've decided to share my experience -- the good and the bad, the deflating and the inspiring.
Suleika Jaouad writes a blog about her experience with cancer at Secrets of Cancerhood. You can follow her on Twitter at @suleikajaouad. Email questions and comments to her at secretsofcancerhood@gmail.com and/or make a comment below!
Follow Suleika Jaouad on Twitter: www.twitter.com/suleikajaouad
David Casarett, M.D.: Overtreatment in Cancer: Common Sense Medicine
Hollye Harrington Jacobs: Silver Linings and Chemo-Sobby During Cancer Treatment
Red Room: Lori Hope: Everything I Need to Know I Relearned From Cancer
Chemotherapy might improve your chances of survival marginally if you are lucky, and destroy much of what is left of your body after that. Trying to cure cancer with toxic poisons is generally not a good idea.
Go to the Internet and research alternative cancer cures. Try all of them. Juice. Take every anti-cancer supplement ever discovered. Flood your cells with healing energy and nutrition. Your chances of a long and healthy life will improve "remarkably".
Write. Write often. It will help others. It might help you. I will pray for you and your getting well quickly.
I discovered such human love and kindness throughout the ordeal.
Suleika dear, I wish you the very best throughout this ordeal, and trust that you will be ever-stronger for having gone through it. Thank you for writing and sharing these thoughts and feelings. I'm sure you give immense strength to others in similar situations, and incredible hope to others like myself.
In a perfect system, well educated patients would collaborate with competent, caring doctors and agree on a diagnosis and treatment plan. In the vast majority of cases, the doctor will have more total medical knowledge than the patient, but it is not uncommon for a patient to have more knowledge about his specific disease. What I was originally criticizing was the belief that a patient has no say in the actual treatment process. The best defense for a patient against poor treatment is a sufficient level of education to determine if the doctor's suggestions are appropriate, and involvement and understanding of every step in the treatment process.
For the record, I happen to think that there are more 15 minute googlers than truly educated patients, but the number of blindly submissive patients greatly exceeds either. No patient should be made to feel powerless regarding treatment decisions when it is the patient who has everything at stake.
His 7 year old brother was the bone marrow donor. He presented every horrible side effect of the chemotherapies - much of it experimental - and fought off graft vs host disease.
My nephew will soon turn 26 years of age; he has been cancer free since 1988. His calm ability to look death in the eye and say resolutely "It's up to me to fight this, and I'm going to win" has remained a true inspiration to me.
I wish you the very best. I understand what you will be going through and you certainly have my prayers. As do your family. Thank you for the courage in sharing this.
www.marrow.org
I underwent a course of chemotherapy. There have been horror stories about what that feels like, but......I went into this presuming that was THEM and it didn't have to be ME, and it wasn't. Sure I was mildly nauseated at times and definitely fatigued and my hair fell out. Big deal. I was lucky.....and lymph nodes shrank (shrunk?) right away and I have been in 'remission' ever since. If enough time passes, they will change that word to 'cure.'
Conclusion: It is better to experience things first hand for one's self, than to interpret experiences through second-hand accounts (especially if those are negative and scary.)