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

Part 5 – Surgery

Continued from Part 4

The surgical team came to get Dad very early on the morning of the day of the surgery.  The technical name for his surgery was a biopsy and debulking; the neurosurgeon wanted to get a sample of the tumor for diagnosis and remove as much of it as possible, which he said would relieve many of Dad's symptoms for the time being.  We had tried to get as much information as we could about what to expect so that we could be as prepared as possible for just before, during, and after the surgery, but many of our questions had gone unanswered and at that point we were all just fighting off sheer panic.  It was like that saying about the appearance of a duck:  we were calm and in control in front of Dad but paddling like hell beneath the surface just to keep afloat.  My mom, my sisters, and I made a pact that we would not cry in front of Dad before the surgery; our strategy was to exude calm confidence around him so that he would take that with him into the surgery. 

Right after they entered Dad’s room in the ICU, the surgical prep team very quickly disconnected the wiring that was hooked up to the monitors, hung the IV bags on the railing and unlocked the wheels on the bed, and rolled Dad’s bed out into the hallway.  “Tell your family goodbye,” the surgical nurse told him.  Fortunately, he was facing away from us at that point because with those words we were all fighting back tears with all of our might.  Whether it was intentional or not, though, Dad was casual; he gave us a wave and then started chatting up the nurse about how he thought it would be a great idea if hospital patients were allowed to have dogs sleep in their beds with them.  "I could have my dog Buddy right here with me," he told her, as he patted the empty spot in the bed by his legs.  

I remember watching his bed be rolled to the end of the hall and then turned so that he was out of our sight.  My eyes filled with tears that I couldn’t stop from spilling over.  I wanted to run after him and say, “STOP!  This is all a mistake!” or at least to give the surgical team a pep talk before they cut my dad’s head open.  I wanted to control what was happening, but there was no control to be had.  I turned to go back into his ICU room and was dumbstruck by the emptiness; I hadn’t realized that they would take him and his bed out of the room that now had almost nothing left in it.  It seemed so harsh, so foreboding, so threatening, and so sad.

My mom, my sisters, and I gathered our things and headed to the ICU Waiting Room, where we had been assured a phone call would come to let us know when the surgery had started and to update us every hour while it went on.  We were on High Guard; our stomachs were in knots as we paced and fretted over the next several hours.  It slayed me that we didn’t even know where in the hospital Dad was during that time; we had been directed to wait in that particular waiting room and so we didn’t even know on what floor the OR was located.  

It was the only period during the time Dad was sick that we had nothing to enter into the Notebook.  Time seemed to move at the pace of a snail, with one desperate hour dragging into the next.  One of my brother-in-laws set up the Care Page so that we could more easily update friends and family members on what was happening, and we tried to create an entry in the waiting room while we waited on an update on Dad, but the Internet connection and the cell phone signal in that part of the hospital were awful.  Actually, it was pretty symbolic for the way the communication between the surgical team and us was going – it was spotty and sporadic at best.

Waiting in that ugly, cold room that day, there was a tenseness that did not go away.  It was just too difficult to imagine what we could lose and so we only dealt with it in bursts.  We took turns holding it together and falling apart; I am sure that in my pacing I covered at least five miles within the walls of the hospital that day.  The sense of desperation and dread were palpable.

The phone in the waiting room did ring many times that day, although not all of the calls that came were for us.  We would literally jump out of our seats each time it rang; I am certain I broke my personal speed record each time I raced to answer the phone.  The updates were all sparse but good; things seemed to be going according to schedule even though for those of us waiting time seemed to be almost standing still during those hours.  Finally, at 1:15, the voice on the other end of the line told us the surgery was over; Dad was in recovery and the neurosurgeon would be up soon to talk to us.  We breathed a collective, tentative sigh of relief. 

However, for some reason the neurosurgeon didn’t appear until 4:15.  An hour before that, I had gone back into the ICU to ask Dad’s nurse in there to call and see what was wrong.  She reported that Dad was off the ventilator but still sedated and that she didn’t know why the surgeon hadn’t been up to see us yet.

When he did show up to usher us into the Room of Doom (You know you’re not going to get GOOD news when they take you in THERE!), he told us that Dad did indeed have the most aggressive and most difficult to treat type of brain cancer and that the prognosis was not good at all.  He told us that he had “managed to remove 80% of the tumor" and said the remaining part was “buried too deep in the brain.”  He offered us the name of a colleague of his, an oncologist whom he said was active in many clinical trials.  I wrote down everything in the Notebook and, when I had run out of things to write, I fell apart.

Continued here… Part 6 – Standing By

The Beginning - One Day While On a Run

On Saturday, October 23, 2010, my husband picked me up at the airport as I returned from a business trip, and as soon as I was seated in the passenger seat he said, "Your dad was running this afternoon and had to be taken to the hospital by ambulance."

I need to give a little background to this:  my dad, an avid runner/biker/swimmer since before I was born, had had lots of accidents over the years related to his workout regiment.  I guess my family had become somewhat desensitized to it after so many close-calls and even a few "hits;" my dad was hit by a car while running at least twice that I know of and while biking at least three times, not to mention the many of emergencies like falls, sports injuries, and other things like heat exhaustion he'd had.  Like a cat with nine lives, somehow Dad always ended up ok after something happened to him, although a few times he'd ended up with broken bones and needing stitches or at least debris picked out of his skin as a result.

So the first thought that went through my head after the news was delivered was the question of whether he'd injured himself or if someone else was involved.  My husband told me the rest of the news that he had at the time, basically that Dad had some trouble on a run, had not been able to get in touch with Mom because she was out of town, had given out my aunt's phone number so she could be called, and then an ambulance had taken him to the hospital where he had had a seizure and a "large mass" had been detected in his brain.

Instinctively, I wanted to hurry to the hospital where he was, about a 3-hour drive from my house.  I frantically called my aunt, my Mom, and my siblings to see what everyone else knew and what they were all planning to do.  Somehow we decided that one of my sisters was going to drive Mom from where she was to the hospital, where they would meet my mom's two sisters, both of whom were at the hospital with Dad already.  My sister that lived in L.A. was going to get a flight the next morning so I would pick her up at the airport and we would go together to the hospital.  At the time, I was convinced that the findings were wrong or at least that if there was a mass in his brain it would turn out to be easily treatable; in my mind, it was a short-term emergency that we would just add to the list of things that he pulled through, and he would be back running in a few days.

I don't remember much of that night or the drive the next day.  I do remember that, as I was taking things out of one suitcase from the previous trip and throwing them into another that first night, I tossed in a spiral notebook because I'd read one time that when someone is in the hospital, everything should be recorded to watch for mistakes and to keep a log of things.  I remember thinking how completely surreal everything seemed as I picked up my sister at the airport and we drove to the hospital.  The shock was all-consuming; it was easy enough to move forward because we didn't really think this stuff was happening. Dad was awake and alert and evidently had been planning to play a joke on us, and so when we walked into his room in the Neuro-ICU, he acted like he didn't recognize us.  Our other sister and our mom recognized that we were about to panic, and they "busted" Dad.  It made us feel good, though, to see that he was up to his usual pranks, even though he seemed a little confused as to what had happened that resulted in his ending up in the hospital and very noticeably did not have any sensation in his left arm or leg.

We were told that the neurosurgeon would be doing a biopsy in a few days and thus began the waiting and the slow-motion panicking as we tried to find out everything we could about what was happening and what was going to happen.  We were told by the surgeon that cancer was suspected and even told what type of cancer he thought it was, glioblastoma multiforma.  Denial had its arms wrapped tightly around us, which was comforting and helpful in many ways at the time.  "THIS IS NOT HAPPENING, OR IF IT IS, THEY ARE WRONG IT ISN'T CANCER" became our mantra.

We didn't want anyone to be negative in front of Dad; he asked over and over what was wrong with him and what was going to be done about it, at one point even saying "I get that it's a mass in my head, but I know it isn't cancer!  I'm way too lucky to end up with brain cancer."  We agreed with him wholeheartedly!


To read about what happened next in our story, click here.