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 11 – Unclear

Continued from Part 10

Just before we had gone to the oncologist’s office, Dad and I were sitting in his room at the rehab facility, and the Pushy Radiation Oncologist returned.  He chatted casually with Dad for a couple of minutes – Dad perkily told him he was “Feeling good, thanks!” when the doctor asked how he was doing that day.  Then Dr. Pushy turned to me and said he would be setting up a session for the radiation to start at the rehab hospital early the next week.  Um, no.

I’ve had lots of instances in my life with my children that my Mother Bear instincts have come out, and now my Daughter Bear protection was out in full force.  I let the radiologist finish talking and then said, “Evidently you're unclear on this, so let me spell it out:  you are not to consult on this case, you are not to come into this room or to have anything to do with  this case unless you get explicit instructions to do so from my mother.  Do you understand?”

“Sure, no problem,” he said as he hastily retreated.  I thought my mission was accomplished until I turned and looked at Dad, who was looking at me with the most terrified expression I’d ever seen on his face.

“Did I do something wrong?” he asked me.  “Why were you so mad at that guy?” 

“No, Dad!  You didn’t do anything wrong!” I said.  “He just didn’t understand that he isn’t your doctor.”

“I don’t understand that either,” Dad said. "I'm really unclear on everything that's going on."

“It’s ok,” I told him. “That’s why one of us will always be right with you.   All you have to worry about is doing everything you can to get stronger.  We'll take care of everything else.”  

And that’s what my mom, my sisters, and I set our minds to doing at that point: following the initial visit with the oncologist, we became laser-focused on accomplishing two things as quickly as possible:  getting Dad through the rehab program so he could get stronger and getting him an appointment at the Brain Tumor Clinic at Duke University.  

There were lots of things happening on the sidelines at the same time, of course.  I coordinated the Get Dad To Duke Mission from home while my younger sister and Mom took shifts with Dad.  My middle sister frantically researched legal and financial issues from her home in California, including disability insurance coverage, medical insurance and sick days through Dad’s employer, Medicare, and the availability of VA coverage and/or services.  She also looked into home health care resources.  We both continued to investigate other treatment options and treatment centers, just in case the Duke Program did not work out; we even set up a website as a clearing house for all of the information we were collecting (www.guest.portaportal.com/IronmanBill).  We sent a flurry of emails every day between us regarding the details of Dad’s care, what was going on at the rehab facility, research on possible medications including Avastin and other physicians, and insurance coverage.  We exchanged emails and phone calls with other oncologists and others in the field of brain tumor research/treatment and seemed to keep hearing that Duke was the place to go and that Avastin was the drug that we needed to get for Dad.  

On the day after the oncologist appointment, the Case Manager came by to meet Mom and Dad and said she would help with legal paperwork (medical power of attorney, etc.) and also with coordinating services for after discharge.  She told Mom that the team would meet the following week to decide how much therapy Dad would need after discharge and whether they recommended that he get therapy at home or in an outpatient clinic.  That night, the Rehab Director told Mom that the team was recommending that Dad stay at the facility for about three weeks.  Mom questioned him about that since we had previously been told the length of stay would be for a week to ten days, and the man told her he felt Dad needed extra time and that he would just talk to me about the specific recommendations when I was there on Monday.

When Mom conveyed this message to me, I was stunned that the team had met without input from us.  In my professional and personal opinion, Dad had not had the opportunity to do his “best” due to the way the therapy sessions kept being cut short or missed due to schedule conflicts and due to the lack of management of medical issues Dad continued to experience – primarily the lack of sleep, the effects of which were exacerbated by the insanely early morning wake-ups by the nursing assistants who came by around 5 a.m. daily to help Dad get ready for the day.  I tried to contact the Case Manager by phone but kept getting her voice mail and did not get a returned phone call despite leaving repeated messages.  I spoke to the Rehab Director by phone, but he insisted that he and I discuss the details including the long-term and short-term goals for Dad, early the next week.   What was going on there was both unclear and maddeningly frustrating; Dad had made little if any progress at all in the five days he had already been there, and we could see the sand flowing through the hourglass every second that passed.  

Over the weekend, therapy services were sparse despite the fact that we had been told before admission that patients like Dad who were there for short-term stays would get 6-7 days of therapy per week.  He was very restless, despite the company and intentional distractions family members provided him.  My aunt took Dad all around the hospital in his wheelchair, which was technically against the rules but was good entertainment for him.  The doctor granted Dad a “grounds pass” on that Sunday so he could go outside for a little while to get some fresh air.  One of my mom’s friends brought my parents’ two greyhounds to the courtyard so Dad could spend time with them there, which he seemed to enjoy.  Dad was anxious to get on with things, though; he wanted to get better and he wanted to go home.

He continued to experience severe heartburn (which we later learned was related to the massive dose of steroids he was taking), fluctuating blood sugar levels, and headaches and to have lots of trouble sleeping despite pervasive fatigue.   There were lots of inconsistencies among the staff as to how to treat Dad’s pain, elevated blood sugar, and insomnia; every day there seemed to be another plan and none of it helped much if any at all.  

In the meantime, my husband and my middle sister’s husband came in from out-of-town to get my parents’ house set up in anticipation for Dad’s discharge from rehab.  I asked for advice from the therapists at the rehab center on this but was told we should "wait and see," which didn't seem reasonable to us since we expected Dad to come home within the week.  I consulted with my physical therapist and occupational therapist friends to help the "Men At Work" figure out at what height to mount the grab bars. They installed grab bars in the bathrooms by the toilets and in the shower, rolled up throw rugs for safety when Dad used the walker, and rearranged furniture to make the house more accessible.  We wanted to have everything 100% ready for Dad to come home.

Dad seemed to be excited about watching the Auburn football game and the NYC Marathon that were going to be on TV that weekend; however, his short attention span and fatigue hampered his enjoyment in things like this that he usually would have savored.  

Late one night that weekend, Dad was getting stir-crazy from not being able to sleep and asked Mom for a book to read.  She handed him the latest John Grisham book that he had gotten for a birthday gift the week before, “The Confession.”   Mom closed her eyes to rest for a few minutes, but after a short period of time she heard Dad say, “Oh my God!  This guy has a brain tumor and he’s going to die!”  In that moment, the weight of the realization of the severity of his own diagnosis hit Dad like a ton of bricks; it was the first time he seemed to fully understand the direness of the situation.  He was, understandably, devastated, angry, and afraid.  He suddenly had lots of questions about his diagnosis, and he was desperate for answers.  Mom dutifully wrote down Dad’s concerns in the Notebook and assured him that they would find out the answers from the doctors as soon as possible.  She did her best to refocus him on the fact that we were fervently working to get him a treatment so “cutting edge” that it had a CURE as a goal and that we believed that he was just the person who could beat the odds.

Next in the story … Part 12 – "Real Cancer"

Part 9 - Going to Rehab

Continued from Part 8 

When we got to the rehab hospital, we checked in and got Dad settled in the bed in his new room.  He was happy because his incision had finally healed enough for him to wear his reading glasses (the staples were close enough to his ear that there had been concern previously about the ear piece possibly dislodging them), and so he relaxed in the bed reading the newspaper while Mom and I unpacked.  

Dad, reading the paper in bed just after we got to Rehab

The Rehab Director came by and did an initial assessment, with the focus being on Dad’s cognition and safety awareness.  I reiterated that we were seeking a short-term stay of about a week so that Dad could get intensive therapies to get him started in his recovery.  He said that the therapists would all do their initial evaluations and then the team would report back to us regarding their recommendations.  With a rehab background, I felt like I understood the process and told him that we would like to have input into the plan and to get recommendations about equipment needs so that we could get the house set up as soon as possible.

Two more physicians came by that night after I'd left to drive the three hours back home; both spoke to my aunt, who was sitting with Dad while Mom went home to change clothes before she spent the night with Dad.  Dad immediately liked the neuropsychologist (I think it was because the guy looked like a runner.); they talked for awhile about the benefits of inpatient therapy and agreed to talk again in a couple of days.  The next doctor was a radiation oncologist who informed my dad that he would be getting the initial phase of radiation at the rehab hospital, after which he could be treated at a facility closer to my parents’ house.  My aunt told the doctor that she thought we had been in contact with another radiation oncologist and that he should come back at another time to speak with my mom.  Dad was somewhat confused about the whole conversation; he wasn't clear about the fact that he had been diagnosed with brain cancer, much less that he was supposed to get radiation in the near future.  

Around 5:30 a.m. the next morning, the nursing tech came into the room and announced that he was there to assist Dad in getting bathed and dressed for the day.  As usual, Dad hadn’t slept very well the night before, and so Mom asked if the shower could be delayed.  “Nope,” nursing tech said, “We have about 40 patients to get ready for the day, and we have to do it before shift change at 7 a.m.”  Hmmmm.  In that case, Mom told him, she would help Dad get ready a little later.  The tech presented her with Dad’s therapy schedule for the day before he went on to the next room.  

The therapy schedule board at the Rehab Hospital

Waiting for therapy to start

It looked like it was going to be a busy day, just the kind that Dad typically would have appreciated and the kind we were expecting as part of the short-term rehab stay.  The schedule said that Dad would get OT, PT, and Speech Therapy (to work on memory) back-to-back starting at 8 a.m. and then more therapy that afternoon.  Good plan, except the OT showed up 45 minutes late, which threw off the entire schedule.  In what became a pattern during Dad’s stay there, the therapists juggled things around to try to fit Dad in, and oftentimes Dad and the family member who was with him were not informed of the changes or the scheduled ended up not being able to be adjusted and some of his therapy got left out.  Dad did a lot of waiting, and, as par for a brain injury like his, he was having trouble dealing with schedule changes or uncertainty.  He asked many times what was next, but the answer didn't seem clear to anyone around.

Mom asked the OT about equipment recommendations during that first session, and the OT said we shouldn’t worry about that yet since she expected Dad to progress so quickly.  About mid-morning, my aunt came again to stay with Dad, and Mom went home for a wardrobe change.  During that time, the facility's radiation oncologist again paid Dad a visit; he told my aunt that he had been told he would be handling Dad’s radiation treatments at that facility.  My aunt told him that was incorrect, that we would be taking Dad to a specialist recommended by Dad's oncologist.  A few minutes after the first guy left, the rehab director came in and told my aunt that patients typically stayed in rehab there for a couple of weeks or more and that they would have a plan to present to the family in the next couple of days.  My aunt passed the info on to my mom and to me; I was uneasy about both of the communications because they were different from what I had heard when I was there just the day before.  In what became another unfortunate pattern in Dad's treatment, there were details to be ironed out with what was going on in this facility, and it was impossible for someone who was off-site to do any ironing.  

Next in our story … Part 10 – First Appointment with the Oncologist