Two years ago those were the words that changed my life forever. I remember the moment so clearly it seems both yesterday and a thousand years ago.
It was 7:00 on a Tuesday afternoon and I had been waiting in the office of the clinic just above the Airport Express station since 5. The week before I had visited a doctor at the clinic believing I was having migraines. Since I had no history of migraines the doctor scheduled an MRI and I was now awaiting the results. I remember being terrified that the cause of my headaches had been an eschemic attack, a type of stroke that my father had had previously.
After 2 hours of waiting, as the clinic was closing I was finally admitted to see the doctor. He pulled out my MRI and pointed to a section on the right side that showed the expected white curls amid black space and said ‘this part looks normal’. He then pointed to the left side which was a cloud of white and said ‘this is not normal. I advise you to go to a hospital immediately.’
He then read me the MRI report that indicated I had 3 lesions on the left side of my brain with an initial diagnosis of either CNS infection, primary CNS lymphoma or primary CNS tumor. I was chilled to the bone.
I remember leaving the clinic in central in a panic. I tried to call Nicole but she was in her yoga class and I could not reach her. I walked down to the taxi stand and looked at the huge line. My mind was racing a million miles an hour and tears were streaming from my eyes as I faced the crowds at the MTR station and finally decided just to walk home. I don’t know how many messages I left for Nicole.
At that time I honestly did not know what to do. I had been told to go to the hospital immediately and was close to getting into a taxi and telling them to take me to the hospital when Nicole finally called. She calmed me (albeit a tiny bit) and told me not to go to the hospital until she could make some phone calls. I agreed and continued walking. By the time I got home she had called her brother in law and sister and said we should go there to eat something. When we got there I could at least try to distract myself with my niece and nephew. At the same time her brother in law was helping me to set up 2 consultations with neurosurgeons for the following day. As it turns out, that may have been my savior. The second consult was with Dr. Fung, the former head of neurosurgery at Queen Mary Hospital (the best place in Asia for brain tumors), who was able to arrange to have me directly admitted to the neurosurgery ward that evening.
It’s hard for me to put words to how I feel tonight, 2 years later. By all rights I should be dead already, and to be here now writing this, feeling well and with real hope of recovery I feel blessed beyond my ability to comprehend. Each day since I heard those words I have lived with a greater appreciation of my life, my family, my friends and everything and everyone that has supported me and enriched my life. A friend of my who is a brain cancer survivor told me that even with all the treatment and torment he would not have given up his experience because of the perspective he had gained. I’m not ready to say that yet, and doubt I will be until I am 10 years in remission, but I understand what he meant.
These last 2 years have burned away a lot of my pride and pettiness, have slammed an inescapable mirror in front of my face and forced me to accept all my faults, failures and fears. I could no longer ignore those parts of myself and my life that sucked life and energy from myself and those around me and could see how pointless those behaviors and habits truly were, yet at the same time I was able to accept the good and the worth in myself in a way I never previously had. I found in myself forgiveness for everyone grudge I had ever held with another, and in doing found forgiveness for myself.
Next week I will have another MRI, and though I am as nervous as always there is reason for hope. The last 2 MRI’s were extremely positive and if I can stay on that trajectory next week I will feel that I can truly look towards the future.
A few weeks ago I had the opportunity to go to the Burning Man festival in Nevada (pictures are posted on my Flickr site) after a 2-year absence. Being there was an affirmation of life for me, and I went to the Temple and wrote the following on the wall:
I am not dieing of brain cancer.
I am living with brain cancer.
Hope is strength
Family is strength
Friends are strength
God is strength
I am strength
(I had t-shirts made with the same words and wore them all week, giving away several to others who either were suffering with cancer themselves or suffered with afflicted family members)
At the moment I wrote those words and thought about where I was, alive in the Nevada desert instead of dead beneath it, I cried because I realized that for the first time in 2 years I was thinking of living rather than thinking of dieing. Hopefully next week will sustain that feeling.
Thank you to everyone who has cared for and about me, or supported and enriched my life in any way. I wish all of you health and happiness, wisdom and perspective, long life and freedom from hardship and harm.
-TC