Part 12 - “Real Cancer”

Continued from Part 11

Monday, November 8, started with the best news we’d heard since this whole ordeal had begun:  I got a phone call from the neuro-oncologist who is the leading researcher in the GBM clinical trials at the Brain Tumor Clinic at Duke University.  I had spoken to his secretary and filled out some preliminary paperwork to try to get Dad an appointment with the team there, and the doctor was calling to tell me that he would consider accepting Dad into a trial once we submitted more paperwork, a copy of the post-surgical MRI scan, and pathology slides from the biopsy from the surgery.  I was at work when I got the call and cried tears of joy when I hung up the phone.  I left work and called Mom and the other family members to let them know, and then I hit the road to drive to see Dad.

By the time I got to the rehab hospital that evening, Dad had had half of the 36 staples at the site of the surgical incision in his head removed.  I got there just in time to speak with the Rehab Director, who told me the rehab team felt that Dad needed to stay there through November 19, which would be a 20-day long stay instead of the 7-10 day stay we had anticipated.  He insisted that with the extra time Dad would be “much more likely to achieve the team’s goals of supervised/modified independence,” which in rehab terms means that a person goes home able to take care of himself with special equipment (like a walker and a shower bench) but would need another adult to be nearby in case he needed to ask for assistance.

I saw the distance we needed to travel to get Dad closer to his previous level of functioning, I really did, but I didn’t like the plan.  I felt like the therapists and medical staff there could be doing more to expedite things.  This wasn’t what Dad – or we – had signed on for – NONE OF IT!  I was disappointed, frustrated, and worried about so many things that were going on.  But, like anyone who loves someone who is sick, I was willing to do WHATEVER it took to help Dad – to have him stay longer in rehab, to arrange for “adult supervision” when he went home, to beg/borrow/steal to get him into the program at Duke, and even, if it came down to it, to figure things out if Dad couldn’t get back to 100%. 

I also went to the Case Manager’s office that evening, but she wasn’t there so I left a note imploring her to contact me to discuss discharge arrangements and equipment and legal/medical paperwork as she had promised to help us with.  I had left several messages on her voice mail over the past several days, and so I was starting to get annoyed that she was so inaccessible.

Dad, with the "Lance" book before he got sick

I spent the night at the rehab center that night with Dad, and we talked a lot about past races we had run together and how we hoped to be able to do that together again.  Dad had starting re-reading Lance Armstrong's book, It's Not About The Bike, which he and I had both read when it had first come out, and we talked that night about how Dad could set new goals and priorities if necessary.  

The next day we were scheduled for our first visit with the Radiation Oncologist, whom we had met briefly in the hospital and who was teamed up with our oncologist and was aware of the different treatment protocols we were considering.   As we wheeled Dad through the lobby of the hospital where the Radiation Center was located, he looked over at one of the waiting areas and saw several people there who appeared to be getting treated for cancer.  In what was more heartbreaking than embarrassing at the time, Dad loudly said, “Wow!  Look at those people!  I’m so glad I don’t have real cancer!”  We hurried him into the elevator and headed to the basement for the appointment.

We checked in there and sat in that waiting area.  Dad immediately said that he had to go to the bathroom, and so I wheeled him into the handicapped-accessible restroom, locked the wheels on the wheelchair, and went to stand outside the closed door.  I waited for a couple of minutes and then said loudly through the door, “Use the grab bars!  Let me know when you are sitting back in the chair so I can come in!”  He didn’t say anything back, and after another minute I heard a loud bump against the wall in there.  “I’m coming in!” I said, thinking he had fallen against the wall, but when I entered the room I saw that he was in the wheelchair, with the wheels still locked, trying to get to the sink by moving the chair with his feet, which caused the footrests of the chair to knock into the wall.  “Dad!  I told you to wait for me,” I reminded him.  He shot me a look that said it all:  he was not happy that I was implying that he needed help and that he felt his privacy was being invaded.  I let the subject drop, and we went back into the waiting room where Mom was filling out the stack of required paperwork.

Dad wanted to read the newspaper but kept dropping it, and finally he just gave up.  Luckily, we didn’t wait long before they called us back into a treatment room.  The nurse came in and pointedly asked Dad what the reason for the visit was (ah, the orientation questions again!).  “I just had surgery on my head,” he told her, “but I’m not really sick.”  She threw a not-so-subtle look at Mom and me which Dad completely missed.  She made a note in the file (probably a big red “X”) and hustled on out.  

When the Radiation Oncologist came in to see Dad, Dad tried to stand up from the wheelchair to shake the guy’s hand (of course, without locking the brakes on the wheelchair).  Fortunately, the doctor saw what was about to happen and beat Dad to the punch; he stepped forward quickly and stuck his hand out so the handshake could occur at “seated” level for Dad.   I liked the guy right away.


Using easy-to-understand language and even drawing on the dry-erase board on the wall for visual support as he talked, he very patiently reviewed the history of what had transpired over the past 18 days.  When he was done talking, he asked Dad if Dad felt like what he had said was accurate.  “If you say so,” Dad said, very seriously.  He then asked if Dad had any questions for him.  I was fully prepared for Dad to ask something like when he could run again or even where the guy had gone to medical school, but he cut right to the chase and asked, “Have you ever treated anyone or have you even heard of anyone who has had the same cancer I do who has survived?”

The doctor fielded the question well; he told Dad that he had treated others and had heard of many others with GBM who, with treatment, had survived for varying amounts of time.  Dad took in that information and then we moved on to discussing the proposed protocol for the radiation treatment.  The doctor gave us lots of details about what he thought the protocol would be but stressed that he would defer to the Duke protocol and would work closely with the local oncologist and the neuro-oncologists at Duke should we go that route.  We agreed that the doctor would communicate with our oncologist once I let the oncologist know what we heard from Duke so they could determine how to proceed.  

After Mom, Dad, and I drove back to the rehab hospital, we were informed that Dad had been “bumped” from the therapy schedule because they “knew” Dad would be exhausted after the off-site appointment with the radiologist.  Actually, he was very tired, but we were on a mission, and we did not appreciate the cancellation without even so much as a conversation.  The Rehab Director apologized for the missed sessions.  He said that he would be back the next day to remove the remaining 18 staples, after which Dad could get a haircut for the first time since the surgery, which excited Dad much more than the idea of the many more therapy sessions to come in the days ahead. 

Dad, ready to get the staples out 

The week continued, with therapy in full force and the "team" on the sidelines getting what was required sent to off to Duke.  With as fast as we knew the remaining cancer cells were growing and multiplying, we had to put our eggs into one basket and we had to do it FAST.  This was REAL CANCER and we were dedicated to proceeding full-steam ahead to get Dad into that program at Duke.  

Up next … Part 13 – The Quest For Foster