The Marker

Before my dad went on ahead, I’d never really considered the way that the birthday of a loved one can transform from something that fills you with anticipation and excitement to something that seems so sad.  It seems so odd to me the way that happens; certainly I still want to recognize and celebrate the birth of one of the most important people in my life, even when he isn’t still here to celebrate himself.  I think for my family, the sense of enhanced sorrow and grief that comes with this week is exacerbated by the fact that it was the same week that he was diagnosed with the brain cancer that took his life only ten short weeks later.  That, as much as his absence, makes it seem counterintuitive to celebrate.

For me, in fact, it feels like salt is being rubbed into a wound, and a lot of the emotions that are usually just hanging out beneath the surface on a typical day seem to be bubbling up and threatening to erupt with the week when everything changed for my dad, for my family, and for me.  The annual marker, which I prefer to avoid thinking of as an anniversary since I tend to think of anniversaries as happy and worthy of celebration, approaches without hesitation and haunts us without regard to our ongoing pain. The week represents such a major shift - an ending of things as they were and an awareness of what should have been.

I long for just one more hour, one more conversation, one more hug, one more anything with him.  I want to push through the pain and focus on the importance of the day of the year on which the man who means so much to me came into this world; the challenge to do so is far greater than I ever imagined it would be. There are so many things that my dad will not get to experience now, things he would so love to be a part of or to know about or to see.  His presence in my life continues to shape me on a daily basis, and I do celebrate that fact as much as the grief will allow. Sometimes though, especially when I can’t avoid the what if, the should have, or the should be kind of thinking pattern, I am overwhelmed by it all, missing him so much that I struggle to move through the ache. The only thing that seems to be of comfort to me when I think about those things is to remember the life that he led that I know he considered to be a great one, to recall the way he was filled with such joy and gratitude, and to recognize the fact that I know if he knew anything at all for certain during the days of his illness it was that he was loved.  Happy birthday, Dad; you are loved and you are missed.

The Shift

It always feels strange to have something significant going on in my life that people around me aren’t aware of.  I’m sure that’s true for most people; one common example of this is when it’s a person’s birthday and most of the people with whom he or she crosses paths that day don’t know that it is. Whether it’s something good or bad, oftentimes it seems like the information just isn’t comfortable or appropriate or relevant enough to share.  In many cases, I think it would feel awkward, somehow attention-seeking  or maybe even like bragging, to tell the people around me, and in some cases I don’t really even want them to know for various reasons – but it still feels odd, as if I am driving on a side street or an access road alongside the main highway.

That’s how it feels to me going into the week that marks three years from the time my life – and essentially my perspective and my bearings – shifted, the week that holds the series of days during which my dad was taken to the hospital by ambulance, when we found out about the mass in his head, when he had surgery, when we got the definitive diagnosis – and his 67^th birthday which we spent hunkered down in the Neuro-ICU, in shock and in terror.

There is such a maelstrom of emotions and thoughts going on in my head right now, a source of confusion that makes it difficult to know how to identify my feelings or what needs to be done to get me through the time ahead, by me or by anyone else.  Over and over, I wonder in shock how a span of three years has passed already.  I wonder how we got through those days that seem even more unbelievably difficult from my perspective now than they did at the time.  I wonder when each of the series of shifts in me occurred after that first shift – and when, if ever, the process will slow down or come to a halt.  I wonder whether it is better to try to forget about the panic and the pain of the days of my dad's illness or to let the remaining sadness and the swirl of other emotions that goes along with the anniversary of that first week play out; I wonder if sharing my feelings and my perspective is the right thing to do.  

Remembering what was happening at this exact time three years ago is oddly both grounding and disconcerting.  Thinking back about what my dad and the rest of my family were doing in the weeks and the days leading up to the beginning of the trauma, it was as if we were on an airplane right before the plane hit an air pocket causing a sudden drop.  In regards to the significance for me of the upcoming days, a lot like the people around me now, back then I had no idea that a shift was happening, that something was occurring in those days that was affecting someone close to me and that would eventually change everything.

My dad, helping his youngest granddaughter across a rocky path, just weeks before his diagnosis

Memories on April Fool's Day

Twenty years ago today, my then-fiance and I went to the County Courthouse during our lunch break and got our marriage license.  We had intentionally planned to get our license that day: I've always loved April Fool's Day - even if I don't have a good idea or an opportunity to pull a prank on someone, I love the idea that I COULD - and also it was the only day that we could coordinate our schedules to make it downtown during business hours before our wedding date less than three weeks later.  

It's a good thing we did it that day, because, as it turned out, on April 2, the next day, my grandmother died.  

My maternal grandmother was the grandparent to whom I was the closest at the time; I saw or tried to see some of myself in her - or I guess I should say I tried to see some of her in me.  Anyway, even though she had been sick for awhile as she struggled through a relapse of breast cancer, I was shocked by the news.  I was grateful that my grandmother had hung on long enough to meet my husband-to-be and to hear about my wedding plans - and most importantly to meet her youngest grandchild, whom she held in her arms not long before she went on ahead, but I was so saddened by the loss that I could hardly put one foot in front of the other.  It was the first death that I had experienced of someone to whom I was close, and I was at a loss of how to even try to cope.  

Needless to say, the next few days were a blur as we made our way to the city where she lived and gathered together as an extended family to pay our respects.  I remember that I didn't think I would be able to sit through the service in the church without bolting for the door because I was afraid my cries would be too loud.  I remember hardly being able to bear the pain of looking at my mom, at my two aunts - one of whom had a two year-old and a two-week-old baby - and most especially at my grandfather, whose sky-blue eyes held such endless sadness that there seemed to be no possibility of ever being able to comfort him.  I remember that I stood with one of my cousins and my fiance long after the rest of the people had gone back to their cars at the cemetery; the funeral director had dismissed us after they'd lowered the casket into the ground, but I just couldn't bring myself to walk away before I'd seen her body buried, one final thing I felt I could do, if not for her than in her honor.  We stood there by the headstones of the other graves around her plot, and I looked for four-leaf clovers while the dirt was placed over her beautiful silver casket, adorned with beautiful tiny daisies.  I remember that I was a little bit comforted by wearing one of my grandmother's sweaters to the funeral; it was the only thing I had of hers besides the opal ring she had given me - "October birthday girl to October birthday girl,"she'd said - when I celebrated my sixteenth birthday.  Years later, I pulled that sweater from the back of my closet and wore it to the funeral of a friend, and in the pocket I found the handkerchief that my dad had given to me at my grandmother's funeral, a reminder of both the tears I had shed and of the love my family shared as we tried to support each other through those rough days.  

I knew my grandmother well enough to know that she would absolutely have wanted "the show to go on," and so, just a couple of weeks after we laid her to rest, my dad walked me down the aisle and I said "I do" to my new husband in front of many of our family and friends, at sunset on the banks of the Mississippi River.  I wore the gerber daisy wrist corsage that was intended for my grandmother during the ceremony; I felt my her absence profoundly that day as I have many days since. 

Wearing the corsage meant for my grandmother

Today, when I think back on that April Fool's Day at the Courthouse, to the days afterwards leading up to the wedding, and to the wedding itself, so many emotions run through me.  I feel lucky, I feel loved, I feel happy for what I have learned and shared and survived.  Twenty years, wow.  Pretty incredible.

My grandfather, at my wedding, just two weeks after he'd lost his wife.
"I'm here for two," he said, and I knew just what he meant.

Getting It Right

One thing that I always admired about my dad was that he never seemed to take the easy way out.  He never made excuses to avoid doing something or, as he termed it, to let himself off the hook.  He viewed anything that he wasn't naturally good at or that scared him (or both) as a challenge.


Of course, there are countless examples that I could give of this trait involving athletic pursuits.  But one obstacle that he had to work to overcome that didn't involve physical tenacity is something that may surprise some of the people who knew him, maybe some who even knew him well:  Dad had a fear of giving speeches.  At one point in time, having to talk in front of a group of people made him very nervous, and until sometime around the time that he took the job that would become his last, he sometimes let this fear get the better of him.  In fact, one of the details I remember most clearly about my wedding day is listening to my dad rehearse his "one line of the day," as he called it, over and over, and watching him stress out about potentially making a mistake when it was time for him to speak during the ceremony.  As usual, when he was nervous, he made jokes, and those of us around him during that time heard lots of entertaining renditions of what he jokingly hoped out loud he wouldn't say in error when the minister asked him his Big Question in front of everyone at the wedding, "Who gives this woman to be married?" 

"What if I freeze up?" he asked me, "or what if I accidentally say something like 'Me and her momma' or 'Her momma and me' or 'Your momma'?"  We laughed because we knew that he knew the proper etiquette of what to say.  But the more he kidded around about what he hoped he didn't inadvertently say, the more nervous he got about getting right what he was actually supposed to say, and it seemed the greater the potential for him to make a mistake.  By the time he and I were in ready-position at the far end of the aisle as the music began and all the heads turned our way, he had worked himself up so much about it that neither of us were laughing.  When we got to the Big Moment (for him, and for the rest of us who knew about his nervousness), when he was asked The Question, his eyes went a little wider and I saw him take a deep breath before he responded, but he pulled it off with his typical style: he said, "Her mom and I do."  Not exactly the line from the Miss Manners Wedding Day Book, but just right anyway, if you ask me.

Just a few months later, he told me that he was thinking about branching out in his career but that there was one thing he really needed to work on before he could really consider make a change: he said he needed to get better at public speaking.  And so, like every challenge I'd ever seen him take on, he dove right in, and he practiced until he got it right.  


As part of getting comfortable speaking in front of a crowd, Dad joined a group of people who also wanted to improve that skill; I'm not sure if it was the Toastmasters International Club but at least it was something similar to it.  Periodically, people in the group were given topics about which they were supposed to write and then deliver speeches, to practice and to improve their comfort levels.  One of the assignments was for each person to talk about how they'd gotten their name, whether they were named after someone, if they had a nickname, or whatever information related to that topic they wanted to share.  


Dad said that one came to him easily; he gave me the written out copy of his speech when I was visiting at my parents' house during that time period, and I was enlightened and entertained by what he had written:


Some people dream of singing in a rock band, winning the Daytona 500, or being a great warrior in an epic battle.  Myself, I have always wanted to be an adventurer.  I am afraid of heights, but I read every book I can find about climbing Mt. Everest.  I have dreamed about biking across the country in 14 days and winning the 48 hour run across Death Valley.  Sailing across the ocean has appeal for me, but it doesn't make my final cut for that list because I'm afraid of sharks.


At this point in my life, I have not failed totally in my search for adventure.  There are a few running and biking tales I could share with you, but I will spare you the details.  There is one outdoor adventure I would like to tell you about, though.  It wasn't my greatest, but it might have been my most memorable.  It took place when I was eight years old, and this is what happened:


For some reason my parents chose to name me William but decided to call me Billy.  However, I've always hated to be called by that nickname.  I think it's because when I was a kid my friends said it sounded sissified.  On my 8th birthday, I decided I'd had enough, and I asked my mom to please start calling me Bill instead of Billy.  I told her that if she didn't I would run away and never come home.  We lived in a small house surrounded by woods, just on the edge of town.  It was a good place to run away and hide, which is exactly what I did on the afternoon of my birthday when it became clear that my nickname wasn't likely to get shortened into the version I wanted. I tucked into a place I found in the woods where I could see if someone was coming but where I couldn't be seen.  As I remember, I didn't go unprepared - I took my silver canteen and something to eat along with me.


I had already figured out how to go to the bathroom in the woods.  My friends and I were often out of washroom range when we were playing cowboys and Indians, and we'd learned to make do when nature called by using leaves or moss or whatever was available at the time.  Unfortunately, that day I made the mistake of using poison ivy leaves for you know what.  It didn't take long for the itching to begin, maybe an hour or two, and not too long after that, I decided that maybe it would be best for me to go home - besides, it was getting dark outside.


As my mom always told the story, I was soon race walking around the house, and I couldn't have sat down if my life had depended on it.  I wound up with such a blistering case that I was taken to the local doctor for some kind of shot.  The doctor also prescribed an ointment that made the itching feel better, at least temporarily.  The bad news is that my mom had to put it on.  God, was I embarrassed.  Not at all the birthday that I'd imagined.


My mom keeps things forever.  She has a log of my childhood illnesses, and on October 26, 1951, the entry in her notebook says, "Bill - poison ivy, lower trunk, really bad."  Amen to that!  At least she'd started just calling me Bill though.

Dad, giving a speech, after he overcame his fear of public speaking.  (Note the guy who can't keep his eyes open!)

Part 20 - Birthday Chemo

Continued from Part 19

Part Three of Our Trip To Duke/Our Journey of Hope 

My middle sister’s husband took a red-eye flight overnight to join us on our third day in Durham.  As happy as my mom, my sister, and I were to have him there for reinforcement, I think Dad was even happier; he was really grateful for some male company.  The weather had gotten chilly since we’d gotten there; my brother-in-law had worn a hat and had brought a matching one for Dad, which Dad put on as soon as he got it.  It was my sister’s birthday that day; we sang Happy Birthday to her in the hotel room before we left for our second day of appointments at the Brain Tumor Clinic.  

The birthday girl with Dad, who's wearing his new hat

Since we had additional support that day, we decided to forego the Shuttle Ride From Hell and have my brother-in-law drop us off at the clinic for our mid-morning appointment so that he could get a couple of hours of sleep in the hotel room and then pack up and check out before picking us up so that we hit the road after the appointment.  

We made it to the clinic in plenty of time and were called back into a conference room just a few minutes after our arrival.  Doctor #1 from yesterday entered the room along with Doctor #2, the guy who was actually in charge of the clinical trial with Avastin there.  They got right down to business, filling us in on what a thorough review of Dad’s records and test results had revealed:  “The MRI from just before he left rehab,” Doctor #2 said, “showed that the tumor had more than doubled in size since the debulking four weeks prior to the scan.  There was essentially very limited surgical benefit.”  

The room was quiet for a minute while we took in this information.  I couldn’t stop myself from quickly calculating in my head that if the tumor was originally approximately 4 cm in size and about 80% was removed during the surgery, what was left was about 0.8 cm.  Now they were saying that that had more than doubled in only four weeks, plus another five days had passed since the MRI, and so the tumor was probably close to 2 cm in size at this point.  And, even more alarmingly, in less than another month, it could potentially be back to the size it was when it was originally discovered.  Back to Square One.  Damn.

My next thought was how to bolster Dad’s spirits, since at this point I didn't think I could protect him from the news that had just spilled out like a toxic gas leak in the room.  I looked over at him and saw him flipping through a magazine that had been left out on the conference table.  I couldn’t tell if he'd heard what had been said or not, and I couldn’t decide if I thought it was worse if he had heard it and was in shock or if he was so off-task that he hadn’t even heard the news.

I told myself that we had to focus on what could be done, not what had or hadn’t been done or anything else, and so I charged ahead:  “What do we do now?” I asked these men, who were reputed to be some of the leaders in research and treatment of brain cancer in the country. 

Their answer was simple:  “Let’s get the nurse practitioner in here to explain the details to you and let’s get Avastin going.”

Well, OK.   Nurse practitioner came in with a neatly organized 3-ring binder full of info about Avastin and the two types of chemotherapy Dad would be getting according to their protocol.  She went over it all in detail and also explained how we could get in touch with someone at their office should we have problems or questions.   Just after she finished talking, another nurse stuck her head in the room and said she had just gotten a phone call from the nurse practitioner at Dad’s oncologist’s office at home, who said that since Avastin was not covered by Medicare, they had cancelled the appointment for Dad to get the Avastin and chemo there on Monday.  WHAT???  There was some back-and-forth on this between the staff there; finally the nurse practitioner left the room to try to get in touch with Dad’s oncologist to see what was going on.

While she was gone, the two doctors asked if we had any questions about anything for them (heh!) – um, just a few, yeah!  We tried to be succinct, but we felt like it was our one-shot at getting a lot of information that we needed to know.  They were extremely gracious and patient.  We found out that the team at the Brain Tumor Clinic at Duke saw about 750 patients with newly diagnosed GBM yearly (in comparison to the 5 or fewer cases most oncologists saw annually, even in major cities).  We discussed alternate treatments that my sister and I had read or heard about and why the doctors felt sure that Avastin was a better option for Dad at this point.  We asked about complementary types of medicines like melatonin and other supplements, calcium channel blockers, and Accutane, all of which have been shown in some studies to enhance the positive effects of chemo on this type of brain cancer.  Over and over again we heard them say that Avastin was The Magic Bullet for GBM and that, especially paired with these two types of chemotherapy and followed up by radiation as per their protocol, and that they expected us to see good improvement in function for Dad and significant tumor reduction in a relatively short period of time.  “It’s the one treatment that can shrink this type of tumor and improve neurological function, sometimes in a matter of days,” Doctor #2 said.

As far as I could tell, Dad wasn’t paying attention to much of what was being discussed in the room during this time; he was still browsing through a month-old copy of Time Magazine (WHY was that even in THERE?  Irony, anyone?).  When one of the doctors asked him directly if he had any questions, he said, “How did I even get this?”  The doctors launched into an analysis of several things that are being researched as possible causation factors for a person with a “predisposition” for this type of cancer – farming chemicals, environmental pollutants, and one that really caught our attention:  Agent Orange exposure from time spent in certain areas of Vietnam during the Vietnam War.  The doctors said that one of the residents in their clinic was gathering information as part of a long-term study of possible causation factors for GBM and asked if Dad would like to participate.  Dad immediately said, “Yes!”  I asked what participation would entail, and we were told a blood sample and a DNA sample would be taken, and an interview that would take about an hour and could be done over the phone later would be conducted.  Dad was eager to sign the papers to give his consent for that, and then we moved on to the next topic:  the treatment protocol.

The Duke regiment for GBM treatment involved getting Avastin and the stronger type of chemo called CPT-11 by I.V. once every other week.  For five days every month, the other type of chemo, Temodar, was also administered in pill form.  This cycle would repeat over the course of four months, after which the CPT-11 would be discontinued, daily radiation would be added, and the Avastin/Temodar would be continued for another month.  And then we would see how things were looking.  

The doctors said that Dad could have only one beer per day during chemo because his liver would already be working overtime to process the chemo.  ("I guess I can live with that," he said.)  They said that the steroids should be tapered over the next few weeks under the direction of the at-home oncologist and that if sleep problems persisted Dad should just take Tylenol PM to help him sleep at night instead of something stronger.   We asked about supplements as part of the treatment, and the subject of the use of medicinal marijuana came up.  “I’d say you should try to get some of that,” Doctor #1 said.  “It can help with sleep, anxiety, and nausea.”  Diving right in, my sister asked where we were supposed to get it.  “Oh, you know,” Doctor #2 said, “just go to a bar and see who looks like they might have some for sale.”  Hmmmm.  We weren’t sure about that option, but I wrote down “marijuana” on our to-do list, and the discussion moved on.

They handed us a prescription for nausea, just in case, and they said we should keep something on hand for diarrhea, which was often a side effect of the CPT-11, too.  At that, Dad perked up and chimed in, “I HOPE I have diarrhea!  Not being able to exercise in weeks is giving me the opposite problem!”  Everyone laughed.  The doctors encouraged Dad to avoid napping during the daytime and to exercise as much as he could “on the recumbent bike or just walking around the block.”  Mom, my sister, and I exchanged looks on that one – Dad had been struggling to get from the bedroom to the den and back a few times daily, using a walker and with someone right beside him for supervision, and so we couldn’t really even imagine him making a loop around the neighborhood.  “Just wait!” Doctor #1 said after he saw our exchange.  “I predict that by Monday he won’t even need the walker to walk.”  OK, sign us up!!

In the midst of the Q & A session, the nurse practitioner came back in and said she had spoken to Dad’s oncologist, who had told her that as far as he knew Avastin was not covered by Medicare for initially-diagnosed GBM, and, at $20,000 a pop, he didn’t want to order it for Dad until the financial end of things was cleared up.  After more back-and-forth on this, Doctor #2 left the room for a minute and then came back in and said, “I want him to get Avastin as soon as possible, and so let’s do it here, today.  Our financial secretary says that Medicare just started covering it for cases like this last week and that it shouldn’t be a problem, but if it is, our clinic will eat the costs for this dose of it and then your oncologist’s office can have the next two weeks to figure out how they are going to get it covered or paid for before you need it again.”  

Wow.  It took about 30 seconds for that to sink in, and then Mom, J, and I were in tears.  J said, “Thank you!!!  It’s my birthday, and this is the best birthday present I’ve ever gotten!”  There were smiles all around.

“You’ll need to stay in town another night just to be sure he doesn’t have any unexpected side effects.  The chemo lab has one opening left for today, and it’s in ten minutes.  Can you stay an extra night, and can you get him right upstairs?”  Um, does a bear live in the woods??

With all the commotion, Dad hadn’t really caught on to exactly what had transpired, and so I just gave it to him in a nutshell:  “You’re going right now to get the medicine that is really going to help you!”  

“Well, let’s go!” Dad said, and we were off to the chemo lab.  

By the time we got upstairs and had filled out the paperwork and then gotten called back to the chemo room, Dad was very anxious; he wasn’t sure what was happening and was very overwhelmed.  The nurse decided to give him a sedative as soon as he had been hooked up to the I.V., which she did in a flash.  She gave us some pamphlets and talked about possible side effects of the treatment.  “It's very likely that you will lose your hair,” she said somberly.  Dad perked up at the mention of that; he very animatedly said, “How soon will it come out?  I hate that I haven’t been able to get my head shaved lately, and I want my head to be completely smooth!”  The nurse said that was the first time any of her patients had actually gotten excited about the likelihood of going bald!

Just before Dad drifted off to sleep, he looked at me with wide eyes and said, “I know the doctor said this stuff is really expensive.  How am going to pay for it?”  I told him that he shouldn’t worry about it because his insurance would cover it, and, with half-closed eyes, he mumbled, “Thanks for the Medicare, Obama!”

While the toxic chemo and Avastin The Magic Bullet slowly dripped into Dad’s veins, he slept so deeply in the chemo recliner that he actually snored a little.  Huddled in the corner beside him, I conjured up thoughts of Pac-Man gobbling up the cancer cells (I’d read that this could be helpful and figured what the hell!).  Mom and J went back downstairs to meet with the social worker to learn about possible benefits and programs for which Dad might qualify.  The nurses bustled around busily, but the room was quiet.  The space felt sacred.  I focused on the high-dollar juice dripping from the bags on the IV pole and thought, “Bring on the Magic!”

Continued here … Part 21 - Erring on the Side of Hope 

Part 17 - Going Home

Continued from Part 16

My middle sister spent the night with Dad at the rehab facility the night before he was to be discharged; Dad was very anxious and antsy, as he put it, "to get the show on the road."  When Mom arrived the next morning, she and my sister took turns loading the car, supervising Dad, and getting the last-minute discharge papers and instructions.  The amount of stuff that had been amassed over the 20-day stay was incredible.  Excitement (and fatigue) was in the air as they took off down the road for the 45-minute drive home.  

As I’ve mentioned, some necessary changes had been made to my parents’ house over the past month while Dad had been away.  My brother-in-law and my husband had mounted safety bars in two bathrooms and had re-arranged the furniture in the den including removing or taping down rugs for smoother transitions.  I had taped reminder notes for Dad around the house; for example, one on the door from the garage into the house said “UP with RIGHT LEG FIRST” to indicate how he should safely get up the single step into the house on the walker.  Dad pretty much barreled in; he literally couldn't wait to get settled in his favorite recliner in the den with the newspaper and a Foster’s.  

Dad had a headache pretty much all the time at this point; he would occasionally mention it, but generally he only admitted that he was in pain when he was directly asked.  He was on some pretty strong pain medication that we had been told would make him drowsy, but we noticed that it actually hyped him up most of the time, although at the same time it didn't cut through the constant exhaustion that followed him around.  

My husband, my daughters, and I drove from out of town to join my parents and my sister and her daughters before suppertime that day.  I remember thinking that everything looked so normal on the surface when we walked in the door of my parents’ house.  As I cut off the hospital bracelet still on Dad’s wrist, I held back tears of gratitude that he was home and silently made a wish that he would never have to wear one again.  

The physical therapist at the rehab center had suggested that we get a recumbent bike for Dad at home, and so we bought a slightly-used one and set it up in the dining room.  “I’m so ready to get back on the bike!” Dad said, although he begged off when we asked if he wanted to try it right then.  As I watched him give it his all to go from the den to the bedroom on his walker, it hit me that Dad might possibly never be able to go upstairs in his own house again.  That was an easy enough bargain, though, I thought, as long as he could start feeling better and get some better quality of life on the ground level.  To accommodate all of the spend-the-night guests there, we rearranged Dad’s upstairs office into a makeshift bedroom.  We moved things around just a little that day, just as our ideas for our family’s future were shifting a little at a time.  

Spaghetti was served for supper that night, but Dad said he wasn’t hungry; he ate only some of what was put in front of him and then later that night kept asking his granddaughters to please bring him “just a little piece of chocolate,” which they delighted in doing, over and over, per his request.  He was glad to have my husband join him in having a beer after supper (we allowed him two beers that day - it was a special occasion!).  Sitting at the kitchen table pouring over the discharge instructions from the rehab facility,I created a checklist listing all medicines, their dosages, and at what time each was to be taken each day, and I felt like I actually had some control over what was going on for the first time since Dad had gotten sick.   

On Saturday morning, Dad’s long-awaited reward arrived:  Foster the Cat!  Foster took a couple of laps around the house to investigate and then settled in on Dad’s lap.  He seemed to instinctively understand that he was Dad's cat, and Dad was his person.  He didn’t seem to mind the two greyhounds at all and was quite content with his new home.  Dad said, “This cat is so adorable!  He’s perfect!”  The kids picked out an orange and blue cat collar and other necessary feline supplies at the store.  When they showed Dad the collar, for some reason he thought it was a bracelet for him, and he said, “Thanks! Auburn colors!” and then proceeded to wear it for the next few days. 

On Saturday afternoon, the home health nurse came to do an assessment to determine if Dad would get therapy and/or nursing support at home.  Mom and I sat with her at the kitchen table and answered questions and filled out paperwork while my sister and the kids entertained (and supervised) Dad, who greeted the nurse when she came in but seemed either unaware or uninterested in the reason for her visit.  When she asked Dad about his pain level, and he told her, “I feel pretty good!” despite the fact that he had rated his headache pain at a 5 or 6 out of 10 since he had gotten home.  

Several times that day, Dad said he wanted to go to the bedroom and lie down.  Sleep continued to elude him, and he was constantly tired.  When he was in the den in the middle of all the action, he seemed distracted and overloaded.  “Sorry, but there are too many people in the room for me,” he said at one point.  We wanted him to be in the middle of the conversation like he typically would be, but we helped him into the bedroom for some quiet time, although at least one of us kept an eye on him all the time for safety reasons.

Dad, on his first full day home from rehab,
relaxing with Foster the Cat and Buddy the Dog
(Note the "bracelet" Dad is wearing.) 

In between the welcome-home festivities and the road trip preparations, we took turns visiting my grandmother at the nursing home.  Like we had done as much as possible since Dad had gotten sick, we reported back to him about what was going on with Grandmom.  He was very worried about his mom and was concerned that she might be upset that he hadn’t been to see her over the past month.  We assured him that she was ok and that she didn't seem to realize how much time had gone by since he was last there.  Even though my parents’ house and the nursing home were only about ten miles apart, it seemed like they were in two different worlds.  We had decided early on in Dad’s illness not to tell Grandmom about Dad’s sickness; she was very confused, and we felt that as long as we were able to continue to visit her and to make sure she was well cared for, she was better off not having to know about Dad’s health.  When I stopped by the nurses’ station at the nursing home, the staff members there were visibly shocked when I told them that Dad had cancer.  “That bald guy has cancer?” one of the nursing assistants said incredulously.  “He looks so healthy, and he’s always so energetic and cheerful!”  They promised to keep a careful watch on Grandmom and to make a note in her chart about the new chain-of-command of phone numbers should they need to call us about anything.

A birthday celebration for Mom

Sunday was Mom’s birthday; Dad had told me a few days before that he thought he remembered buying her a ring for her birthday before he got sick, but he couldn’t remember where he’d put it, if he had indeed made the purchase.  “Maybe I just dreamed that I bought it, or maybe I just meant to do it and then I ran out of time,” he said.  He told us to get money out of his wallet and buy her something on his behalf, and so we bought her a spa gift certificate from him and we celebrated the best that we could, grateful to be together as a family and happy that Dad was home.  

That afternoon and evening, armed with our Notebook filled with questions to ask at the Brain Tumor Clinic at Duke, we packed and prepared for our journey to Durham, NC.  The Notebook served as kind of a coat of armor for us; I felt a little better just carrying it around with me.  Our lists were organized by topic; we had one or more pages filled with things to find out about under the categories like “Genetic Approaches,” “Holistic Treatment Options,” “Clinical Trial Options,” “Prognostic Indicators,” and “Off-label Medication Treatments.”  Between us, we had done hundreds of hours of reading about possible treatments for this type of Brain Cancer over the past four weeks.  We were as fully invested as we could be, and this was a fight we intended to win.  I wrote on the cover of the Notebook:  Our goal is to give Dad full access to the best new treatments, in optimum combinations, as quickly as possible, to support him in quality time for as long as possible.

My middle sister, my mom, and I went to bed soon after Dad that night (clarification: he was already in bed fretting about not being able to sleep, again, and we agreed to take turns sitting up with him throughout the night).  We felt like warriors, on a quest for the best weapons we could get our hands on as we marched into battle.

Up next ... Part 18 - The Long And Winding Road