Two Years Ago

Today I am remembering my family's Journey of Hope exactly two years ago, when we took my dad to The Preston Robert Tisch Brain Tumor Center at Duke University Medical Center in search of a treatment - or maybe even a cure - for brain cancer.

After Dad had gotten his first round of chemo and the "Magic Bullet" drug Avastin there, we spent the night in Durham, as we'd been told by the doctors that we had to do after the treatment in case Dad had any side effects after the first round that required medical attention.

We hadn't planned on staying that night originally; we had been told that we could get to Durham on the Monday before Thanksgiving, go to the first day of appointments at Duke on Tuesday, meet with the advisory team of neuro-oncologists on Wednesday morning, and then hit the road to travel the 500 miles back to my parents' house, in time to make it home that night so we could be there for Thanksgiving.  Our Back-up Plan was to drive part of the way back on Wednesday, spending the night at a hotel along the way and then getting up early on Thanksgiving Day to drive the rest of the way home.

But we also hadn't expected for the team to recommend that Dad start treatment there at Duke, right then.  And, since part of the deal for his doing that was that we stay in the area overnight, we agreed to stick around.  While I sat with Dad in the clinic as the medicine dripped into his veins, my mom and my sister Jennifer met with a hospital social worker to go over insurance coverage issues and other things; the staff at the Brain Tumor Center seemed much more well versed on several important matters like that than did the people with whom we had been dealing at the local oncologist's office.  My brother-in-law, Peter, who had taken a red-eye flight from California the night before to be with us in Durham, hastily searched the city for a hotel that had a suite-style room or two adjoining rooms - one of which we needed to be wheelchair accessible - available for that night.  Evidently, the night before Thanksgiving is a big night for hotels in that area, though, and the only hotel with enough available space for all of us to be in close proximity was not set up for handicapped access.  It was what it was, though, and so after a flurry of text messages back and forth between all of us, Peter booked the rooms and drove back to the hospital to pick up Dad and me, as Mom and Jennifer will still in a meeting there.

Once we got to the hotel, we got Dad situated in the wheelchair, and then I pushed him and Peter carried the luggage up to the room.  Dad wanted to sit in an armchair by the window in our room and watch TV ("It's way too early for bed," he said, as much to himself as to anyone.).  Peter went to the vending machine and got Dad a big bag of peanut M&M's and a Diet Coke, which he poured over ice into a styrofoam cup.  He put the goods on the table next to Dad, and then he and I took a look at the set up in the hotel room bathroom; I was very apprehensive about the fact that there were no grab bars (and essentially nothing else for Dad to hold onto) by the toilet, and, to make matters worse, the toilet seat was low, which would make it even harder (and more dangerous) for Dad to get up and down.  Peter and I decided that he would go to a drug store to try to find grab bars that could be installed temporarily; that seemed to be our only option at the time.

In the midst of our conference by the bathroom door, we heard a noise from the bedroom area where Dad was.  We hurried in and saw Dad nonchalantly sitting in the chair watching TV, with most of his drink and the majority of the M&M's spilled all over the floor.  "What happened?" I asked him.  "I didn't try to get up," he responded, which made me think that either he did and didn't want to admit that he couldn't do it, or he had no idea that I was referring to the fact that there was stuff spilled all over the floor next to his chair.  Peter grabbed towels from the bathroom, and, as he and I cleaned up the mess, I noticed that the table where the drink and candy had been was on Dad's left side, the side that was his dominant but in which he had impairment in sensation and strength because of the tumor.  It was evident that he had either accidentally knocked over the stuff on the table by just moving his arm, or he had reached for something on the table and knocked it over, or he had tried to get up out of the chair by pressing down on the only thing around him - the table- and then the table had tipped slightly, causing him to have to sit back down and the stuff on it to spill.   In any case, he seemed to have forgotten that anything had happened.  When he saw us cleaning up the spill, though, he started asking questions: "Did I do that?" and "Where is Vicki [my mom]?" and "When are we going home?" - and - the one that I thought was the most alarming - "Am I going to get chemo today?"  Shit, I thought.  I had been so hopeful over the last few hours as we heard from the Duke team about the benefits of their treatment protocol and then as I sat beside Dad in the Chemo Room watching him get the Magic Bullet treatment.  Now I was just scared, because with him not noticing or not remembering how he'd spilled and then with those questions, it seemed like he was getting worse.

But, as we had been doing during that time, Peter and I exchanged a look of concern, but we held it together and moved on to the next task at hand: while I sat with Dad in the hotel room, Peter drove to pick up my mom and Jennifer at the clinic.  He dropped off my mom back at the hotel and then he and Jennifer went on a quest for the safety rails, which, as seemed to be par for the course for us, turned out to be not nearly as easy as we'd thought it would be.  Traffic was nightmarish, and none of the drug stores in the area had what we needed in stock.  My sister tried to look up medical supply companies on her cell phone as Peter fought the traffic, but cell phone signal was sketchy.  Finally, they found a little hospital supply store that had the rails; they paid for their purchase and made their way back to the hotel.

Once back in the room, Peter and I looked at the directions for installing the grab bars and realized we needed a screwdriver.  He called the front desk and got connected to the hotel maintenance guy, who agreed to let us borrow one.  Peter handily removed the toilet seat, fastened the frame that was connected to the grab bar to the toilet, and replaced the seat.  Good to go.

The sun was just going down by that time, and Dad was already fighting sleep.  Like every night, he talked us into helping him into the bed and then talked about how he wasn't hungry but would try to eat something for supper and how he knew it would make for an odd sleep schedule to go to sleep that early but he was so tired he didn't think he could help it.

We let him sit up in bed watching TV as we came up with a game plan for what to do for supper. Peter volunteered to sit with him while Mom, Jennifer, and I went downstairs to the hotel restaurant, and we said we would bring food back to the room for the two of them.

I remember sitting in the restaurant thinking about just how surreal the whole situation was, from the fact that my dad had brain cancer, to the way his treatment had been started much more quickly than we'd anticipated, to how we'd been directed to stay in the area for an extra night, which meant we wouldn't make it back in time to join in on the Thanksgiving feast with the rest of my large extended family who had been expecting to celebrate with us after our trip.  As we ate, we talked about what a whirlwind the trip had been, how grateful we were that the Duke team seemed to be in our corner, and how hopeful we were that the treatment would help.

After we'd gotten back to the room and Peter and Dad had eaten, Dad announced that he was going to sleep, which was a cue for Peter, Jennifer, and me to retreat to the hotel room next door.  We positioned the door between the adjoining rooms so that it was almost closed, so we could hear if we were needed in my parents' room but so that we could whisper in our room and not disturb my parents.

As usual, Dad had to get up a few times during the night to go to the bathroom, and we were glad for the grab bars each time.  Because he had been started on the chemo pill just after he had the IV treatment that day, we had been instructed to be sure that the lid of the toilet was closed each time before he flushed and to make sure he thoroughly washed his hands after using the bathroom to protect him against toxic chemicals (Doesn't it seem weird that they were having him ingest the chemicals but he had to take extra precaution to avoid being exposed to them externally?).  We tried prompting him through the bathroom door to remind him, but, because he didn't always listen to us before he did something like flush or try to stand up by himself, eventually my mom just started going in there with him to be sure that he was following the safety procedures.

The next morning, on Thanksgiving Day, everyone but Dad woke up early and packed up our gear; we were eager to get started on the drive home.  We had a hard time getting Dad up and getting him ready; he wanted to have his face shaved, and it took major negotiating to skip it so we could just load up and go.  It was quite the antithesis to his usual tendency when it came to starting out on a road trip; every other time, he was the one getting up early and urging the rest of us to hurry.

Many restaurants and even some gas stations were closed along the way on the long drive home, and, by the time we finally made it back to my parents' house that night, we were hungry and exhausted.  We ate leftover Thanksgiving food that had been packaged up and put in the refrigerator for us after the big family meal that we'd missed.  Dad ate a little turkey and dressing and then went to bed; as usual, though, even with as tired as he said he was at the beginning of the night, he had a hard time sleeping and battled a headache all night, finally falling into a medicated sleep just before the sun came up.

The ringing of my parents' telephone woke us up early the next morning; it was a nurse from the nursing home where my grandmother was calling to tell us that Grandmom had taken a turn for the worse.  My siblings and I hurriedly got dressed and drove to the nursing home to be with Grandmom, and the challenges continued all day long.  A cold front had come through overnight, and it was very cold and windy outside, which added to our problems, especially during the family photo shoot.  

When I think back to that day, one of the most difficult days of my life, I remember the brutal cold, the confusion, the fatigue, and the extreme concern about Grandmom, but what I remember most is how hard Dad worked to take part in what was going on around him - and the feeling of love between all of us.  I remember noticing how difficult it was for Dad to tolerate the cold weather as he was helped out of the car, as he sat in the wheelchair for pictures to be taken, and as he was helped back into the car so he could get back home.  Like a lot of things going on then, the photo shoot seemed almost dreamlike: for as much as I was in denial about the prognosis of the brain cancer, I guess some of the reality had sunken in because not long after the news of his diagnosis had been given to us I scheduled a family photo shoot for the day after Thanksgiving, knowing (desperately hoping?) that the whole family would be together then so that we could have our picture taken, all together.  

We made it through the photo shoot and through the next couple of days, trying to keep all of our spirits up as we watched over Dad and Grandmom.  

I don't remember a lot from the time my dad was sick, including the details of what else we did over that weekend, but I do remember that I felt a sense of unease (even more than usual) when I left my parents' house that Sunday.  I really wanted to be present when the "magic" we had been promised happened; I envisioned Dad suddenly standing up from the bed or his recliner, steady on his feet and with clarity in his eyes and a smile on his face.  But more than I wanted to be there to witness first-hand the miracle, I just wanted one to happen.  I wanted to see the fulfillment of the cause-and-effect; I wanted the promise of the hope that we had to be realized.  It had been a whirlwind past few weeks, especially the one leading up to Thanksgiving, and I was exhausted both mentally and physically, but I was so very thankful for the love and the time together that we had.

The Fight Against Cancer

When I was in college, my grandmother (my mother’s mother) was diagnosed with breast cancer.  She had surgery, went through chemo, and made it into remission for awhile.

After I graduated from college, I lived with her and my grandfather for a few months while I did one of my internships at a hospital near their house.  At the time, my grandmother, then out of remission, was struggling through her second course of chemo, which did not do its job that time around.  She held on long enough to give her input during the planning of my wedding and to hold her youngest grandchild in her arms for the first time, and then she went on ahead, two weeks before I got married.  And thus begun my membership in the I Hate Cancer Club!

Spurred on by this over the years, I’ve participated in at least 25 runs benefiting organizations involved in the fight against cancer, including the Race for the Cure, the St. Jude Marathon and Half-Marathon, and various other races.  Each time, I was proud and humbled to be part of the effort and excited to be part of the extended cheering squad for those involved in this war.

Last August, I participated in the Avenue of Hope 5K benefiting the American Cancer Society in honor of Cindy, a friend of mine battling cancer.  It was a small, local charity race, my favorite kind, full of meaning and spirit and camaraderie.  A group of my friends also completed the race in honor of Cindy as well as many other loved ones who are fighting or have fought this terrible disease.

Cindy with her "team" at the ACS race, August 2010

 Only eleven weeks later, taking part in the fight against cancer took on a whole new meaning for me and the rest of my family. 

Last weekend, I ran the Avenue of Hope 5K again, this time with my younger daughter Molly, who proudly wore her grandfather’s racing shirt in his memory and who won her age division.

While my dad was sick, one thing that irritated him was, as he termed it, “too much talking.”  I could never figure out if it was because of the fatigue from which he suffered because of the incessant insomnia caused by the medications he was taking, because of the tumor in his brain, because of the emotional stress he was under, or because of something else that he couldn’t tolerate chaos or noise during that time.  Many times he asked us to be quiet, even though oftentimes he himself would later break into the silence by asking a question or making a comment.  Most of the time, he just couldn’t tolerate someone talking about the same thing for too long or asking him too many questions, and he particularly disliked it when several people around him were having a conversation and when other people were taking what he considered to be too long to figure something out.  He just didn’t see the need for inefficiency, something to which I can certainly relate.  As we talked about schedules and plans and details that we felt needed to be ironed out, Dad often chimed in by saying, “Don’t worry – just hurry!” meaning he thought there should be less discussion and more action.  One of my nieces even paraphrased Dad at one point when we were talking about something we were going to do later in the day and said, “Let’s quit talking about it and just do this thing!”

As much as I am honored and motivated to continue to participate in events to raise money and to promote awareness for this worthy cause, though, and as much as I take notice of the bumper stickers and related paraphernalia for awareness of different types of cancers, I’m pretty sure everyone is aware of cancer and the devastation it leaves in its wake at this point.  What I want - what we really need in this fight - are prevention and a cure.  Now let’s quit talking about it and just do this thing!

The Writing on the Wall

One of the things I am asked most often about my dad’s illness is if he had any symptoms prior to the day of his fateful run.

As I’ve written in previous entries and as anyone who knew him was aware, Dad was a long-time competitive athlete who thrived on pushing himself to the limit (and sometimes beyond).  He had a very high threshold for pain, which sometimes did not serve him well as he did not always know when to call it quits.  

Dad, getting medical attention after running his fastest-ever time in a marathon

One thing about him I haven’t mentioned, though, and something about himself that he readily admitted was that he was fairly uncoordinated, a fact that was especially surprising considering he was such a talented athlete.  Maybe it was because of this clumsiness or because he was often in a hurry to get somewhere (he hated to be late!), or maybe it was because the amount of time he spent on the road on his bike or running upped his odds statistically of having accidents and mishaps, but either way it wasn’t that unusual for him to have a scraped-up knee or a bloody elbow from a spill that he had taken. 

Dad did have a wreck on his bicycle about a week before he was diagnosed that resulted in some pretty impressive Road Rash on his left knee, shoulder, and arm.  He had taken a spill with the bike tipping to the left side, which frustrated him so much that he had taken his bicycle to the shop the next day to get them to check it to see if it was out of balance.  As we found out a short while later, it was actually Dad who was out of balance; he had left-sided weakness due to the tumor in his brain.  However, at the time, he chalked up the wreck to something being wrong with his bike or to the usual stuff with him, not paying attention to what he was doing, being in a rush, being a bit of a klutz, and/or heat and fatigue due to a very intense training regiment.

Dad, taking an ice-pack break during an ultra-marathon (Note the supplies on the table.)

 Dad had entered three shorter distance triathlons last summer as part of his preparation for the Ironman Triathlon for which he was registered in November, and in all three he did not feel well at the finish, which a doctor who checked him out in between races attributed to heat exhaustion and dehydration.

 

He finished the last tune-up race in mid-August by staggering over the last mile of the run portion and then falling across the finish line, at which point Mom took him over to the first aid tent where he got some fluids and a stern lecture from the medics there about the dangers of dehydration.  They told him he absolutely had to drink at least 10 cups of water daily in the days leading up to a big race when the temperature and humidity were as high as they had been.  Apparently, after drinking some Gatorade in the tent, Dad perked up enough to jokingly ask one of the medics if beer counts as a fluid, which they did not find funny.  And, as was typical for him, despite the finish line drama, he won his age division in this race, too, which he felt was a good indicator that he was right on target in his training program to get ready for the Ironman.

Dad, after again pushing himself to the limit

 Even though Dad was bald-headed for decades, in personality he oftentimes functioned like a Dizzy Blond.  He had been known to pull up in a parking lot or driveway, put the car in park, get out, and come into the house or his office, all without noticing that he hadn’t turned off the engine of the car!  So, if he was doing things like entering the house without closing the front door behind him or losing his wallet, it wasn’t really something we noticed as a Red Flag because of his past actions.

In late August, my dad went to visit his mother, who was ill and living in a nursing home near my parents’ house.  Not long after he got back home, the telephone rang, and it was one of the nurses at the nursing home letting him know that he had left one of his shoes there.  Evidently, he walked out of it in the hallway of the nursing home and, without noticing, walked to his car in the parking lot and drove home.  Again, we chalked it up to Dad just being Dad, not paying attention and being in a hurry to get somewhere.

A few weeks later, Dad drove my mom and one of my sisters to a restaurant near my parents’ house.  It was pouring down rain, and so, after Dad parked the car in the parking lot, they ran from the car to the door of the restaurant.  Once they got inside, Mom noticed that Dad didn’t have a shoe on his left foot.  She pointed it out to him, and he ran back to the car and found his shoe there.  Again, something that might have been alarming for someone else, but not that out of character for Dad. 

According to the resources we were given on brain tumors, the first symptoms are usually things like headaches, blurred vision, memory loss, behavioral changes, or seizures, all of which can be attributed to increased pressure within the brain.  Other symptoms (depending on the location and size of the tumor) can be nausea, drowsiness, weakness or impairment in sensation on one side of the body, or language impairment.

Even with the 20/20 hindsight that we had once the diagnosis was made, of these, the only symptom that Dad had before the day his tumor was diagnosed was impaired sensation on the left side of his body.

Out on his run that day, he got disoriented and had trouble finding the words he needed to respond to questions he was being asked by people around him.  He was taken by ambulance to a local hospital, where a CT scan revealed a “large mass in his brain.”  He was then transferred by ambulance to a large teaching medical center with a Neuro-ICU, and, en route, he had his first seizure.  The paramedics stabilized him and got him to the second hospital, where the medical staff quickly took him to get an MRI; however, during the test he suffered a second seizure, stopped breathing, and had to be resuscitated and put on a ventilator to help him breathe.

Even once the diagnosis had been made and we had read all about the Warning Signs, we still weren’t able to see The Writing on the Wall; even looking back with 20/20 hindsight, we still couldn’t identify what went wrong and when it had begun. 

No headaches, vision changes, etc.  He was still functioning at his 100%, which was equivalent to most other people's 150%.  We later found a To-Do List in his home office and noticed a slight difference in the legibility of his handwriting, which might have been related to the tumor since he was left-handed.  His typical writing style was of the Chicken Scratch variety, though, and so, as much as the falls and forgetting of the shoe were hard to definitively identify as a symptom, it was even harder to connect those dots, even given what we knew.  Literally, there really was no discernible Writing on the Wall.

We were told by several of Dad’s doctors that the type of brain cancer he had is extremely fast-growing; in fact, this type of tumor usually doubles in size about every three weeks.  The doctors said that the tumor very likely started to grow just a few months before the diagnosis.

And, while it seems like it would be somewhat comforting for us to know that there was no chance for prophecy, there wasn’t something there that we missed, and there was essentially no opportunity for early detection, it really isn’t comforting, because nothing is.  The only thing I see written on the wall is that it sucks and it isn’t right or fair, and I want my dad back!