The drive home was particularly soothing that morning—a soft rocking from one side to the other as the curves wound through the trees, allowing small streams of sunlight to peer through the branches. I allowed my mind to release itself into the rhythm of space and just drive the thirty minutes it would take to get home.
Pulling up to the house felt a bit on the lonely side; everything looked so still, so empty. Opening the door, I was greeted by our dogs,who hadn’t seen me in a couple of days. After each received their personal petting time, I gave them a treat. Then grabbed the stack of mail on the table and flipped through it, looking for anything important. I found a couple of bills, opened them, read them, and tossed them aside with the rest. I can only deal with so much at one time, I thought to myself. I just don’t know how older people with cancer deal with all of this stuff AND their disease.
The hot shower water beating against my body lulled me into a welcomed state of empty mental space. I imagined being nowhere, thought of nothing, allowing my feelings to wash away. I became lost in the soothing waves of water, suddenly able to feel each drop. The mental abyss lying in the bottom of my mind enveloped me, and I didn’t want it to end.
How long I stood there, I don’t know. I finally climbed out of my warm encasement, grabbed a towel, and began drying off. Mateo slipped back into my thoughts, and I reflected back on the many phone calls to insurance people, county social workers, legal agencies, and cancer programs seeking information or assistance on Mateo’s behalf. I had sent copies of Mateo’s medical records and MRIs to be reviewed for new clinical trials. I continued to fight for his insurance that was still in a cancelled status. But I could not shake the thought of him standing up at the County Hospital and announcing that his right side “felt funny.” Common sense told me there was something wrong, and it wasn’t his tumor.
Dressed for the second time, I went into the living room and sat on the sofa in front of another stack of mail that had been neatly placed for me to go through. There always seemed to be more than there really was. Newspaper advertisements lay askew among envelopes of more advertisements, with an occasional letter from Social Services, one from Medicare, and another I hadn’t recognized right off. Slightly tilting the envelope into the light, I could see “Maxine Dunitz Neurosurgical Institute at Cedar Sinai,” printed on the left hand corner. I realized this was a response from a request for a medical review and ripped it open. Inside it read:
Dear Mrs. Sanders:
My name is Surasak Phuphanich, and I am the new Director of Neuro-Oncology Program, neuro-oncologist, who is working with Dr. Keith Black in the brain tumor program at Cedars. Thank you for participating in the Outside Scan Review Program from the Neurosurgical Institute at Cedars-Sinai Medical Center. This is a brief summary of the conversation after our team including Dr. Black reviewed your case and imaging.
As you indicated that your son underwent a brain biopsy on 11/14/06 for astrocytoma with hydrocephalus then received radiation therapy from 1/17–3/1/07 and was treated with Temodar from March 07 for 1 year. He then received Avastin with Irinotecan. We reviewed the MRI from 5/2/08 in comparison to 1/1/08 and we did see less enhancement of tumor in the left brainstem. We agreed that it is not necessary for any operation because there was no growth of tumor. You should continue with current treatment and you may benefit from decreasing dose of Decadron, so please discuss with your physican.
We will consider offering you a new clinical protocol of vaccine immunotherapy if you develop re-growth of this tumor. Further specific recommendations on your case are difficult to make without consultation in our office. If you desire consultation at the Neurosurgical Institute or have further questions, please do not hesitate to contact us …”
My heart jumped, suddently sitting straight up in disbelief before reading the letter a second time. Slowly the words began to sink in of what this letter could possibly mean for my son, I began to question, Could it be? Could there really be someone or something that could help Mateo? Noticing a contact number at the closing of the letter, I took a deep breath, picked up the telephone, and dialed.
After a couple of rings, someone answered. I briefly explained who I was and that I had received a letter from Dr. Phuphanich regarding my son, Mateo. I requested to speak to someone for more information. I was asked to “please hold.”
While I waited, I jotted down a couple of notes on a little note pad sitting close by. I fought being too excited while still allowing myself to feel that there just may be possibilities— that frail thread of hope.
A soft-spoken man soon answered, saying he was one of the doctors involved in the screening process for Mateo. It was Dr. Phuphanich, himself. Not wanting to waste his time, I briefly explained who I was, although he seemed to already know. He began asking questions about how Mateo was doing and what his current treatment was. I gave him a medical update detailing Mateo’s current treatment of Avastin and physical condition, concluding with his current hospitalization. Dr. Phuphanich explained the program of immunotherapy, a process by which they would use Mateo’s own immune system to fight his cancer. During the review, he reported, it was agreed that Mateo, given his age and his positive response to treatment, would be a prime candidate for the program. The program would require Mateo to be on his feet with minimal assistance; however, he could stand to gain five years of additional life from it.
Not wanting to take up much more of the doctor’s time, I thanked him, explaining I would tell Mateo about the good news. As Dr. Phuphanich was about to say good-bye, he reminded me that once Mateo was on his feet, I was to call him and they would bring Mateo in for a physical examination.
Struggling to maintain my excitement, I swiftly gathered a clean set of clothes, ran to the car and drove back to the hospital.
With a bounce in my step and a smile on my face, I entered Mateo’s room ready to announce my good news. There he was, sitting straight up in his bed, a crooked smile on his face.
“Hi, Stinks.” His words were almost audible, and his eyes were noticably wider and brighter. He somehow appeared stronger.
I apologized for having taken longer than I originally said I would. Then I pulled the letter from the small backpack I now carried. With my own eyes wider and brighter, I began explaining its contents and then summarized the telephone conversation with the doctor. Mateo’s eyes lit up even brighter. He struggled to form words. “That’s good . . . five years,” he repeated.
“Now, we need to get you back up on your feet, okay?”
“Okay,” he answered, more determined now.
“You still want to fight?” I already knew the answer.
“Yes,” he said with a sense of renewed strength and optimism.
By Saturday, Mateo was released from the hospital, still having to use a Foley. However, not only did he sit straighter and unsupported in his wheelchair, he was also able to speak more clearly and regained some of the use of his hands, legs, and arms.
For the next week and a half, Mateo received home visits from physical, occupational, and speech therapists. Within the first two days, he was back on his feet with the assistance of his walker once again. Every day, Mateo and I ran through a regimen of strengthening exercises provided by his physical therapist. By the end of the first week, he was swallowing carbonated beverages again without choking and impressing his speech therapist. He was also able to speak more legibly and could move his body around with minimal assistance, though still hampered by the numbness of his right side.
Watching Mateo’s quick progress every day was encouraging. He seemed to be working harder at trying to access the slow numbing muscles that still caused him to struggle. Periodically I would check, “Is it your tumor?” His answer was always the same. “No, it’s my right side”.