Priceless Memories

Eight years ago, my sisters, our husbands, and our children traveled from our corners of the country to meet at my grandmother's house in Alabama.  The day after we had arrived, our group of eleven piled into cars and drove across the state line to Wild Animal Safari in Pine Mountain, Georgia.

When we got there, we found out that there were 15-passenger vans available for rent to drive through the park - and the vans were zebra-striped!  We knew it would be much more fun for all of us to be together in one vehicle to travel amongst the animals who roamed free over the many acres there.  We paid the admission and the rental fee and then headed towards our Zebra Van; as we were boarding, my brother-in-law Peter walked over carrying a giant bag of animal feed.  He said it was a better deal to buy in bulk instead of purchasing individual containers of food for each of us to feed to the animals in the park.  I will never forget the look of wonder on Grandmom's face when she saw Peter carrying that huge bag; she laughed excitedly as she took her seat in the van and then said, "The animals sure are going to LOVE us!"  

Somehow it worked out so that my brother-in-law David took the wheel in the van - some of the time with my niece Daly on his lap - and with my daughter Molly in the passenger seat in front.  The rest of us sat on the bench seats in the back with our windows rolled down, ready to feed the animals as David slowly drove along the gravel road, stopping frequently as wildlife approached the van.  

There was a great variety of animals in the park, from antelopes to zebras.  We all had a blast, including and maybe especially Grandmom, who smiled ear-to-ear the whole time that we were there and laughed hysterically when a big slobbery bison leaned in through the window and tried to lick her in the face!

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We had such a good time there that day that a couple of years later my husband, my daughters, and I went back to the park with Grandmom.  The second time, when it was just the five of us, she was moving much more slowly than the first, and we just drove through the park in our car since we were a much smaller group.  After we had driven through the safari part of the park on our return trip, we went in the gift shop.  Grandmom, who, as I've mentioned, lived on a very tight budget, thanked us for taking her and for paying for her admission, and then she said she wanted to buy a souvenir for us to take home.  Always the practical thinker, she picked out a pair of salad tongs with a zebra carved into the handle of each one.  When she gave them to me after she had paid at the counter, I noticed the price tag said $19.99.  That was a lot of money for a person of her income to spend on a non-necessity, I knew, and she knew that I knew it.  I looked at her, thinking that I should decline the gift and try to get her to return it, but then she said, "Thinking I was going to be able to take a vacation somewhere this summer, I had some money saved. Today has been as good as any vacation, and I don't need anything else, so please accept my gift."  

The zebra salad-tongs, today

A few weeks before, Grandmom had stepped into a hole in her backyard while hanging clothes on her clothesline and had broken her leg.  My dad had tried for years to get her to let him buy her a dryer, but she insisted that it was a waste of money and she didn't need it.  After all, she said, she had raised a family and had lived without one for eighty years, and who could argue with that logic?  When she had fallen, she laid in the yard, unable to get herself to a phone, for about an hour until her next-door neighbor pulled up in his driveway and saw her.  He had called the ambulance and then my dad, and my parents had come to be with her while she was in the hospital.

When I'd called the next week to check on her, she told me that she had a walking cast on her leg and that she would appreciate some help with a couple of things so she hoped we could come to visit her soon.  Of course, I arranged to get there as soon as I could, worrying that things must really be dire if this independent woman needed help taking care of herself.  When my husband, my daughters, and I got there, though, we found out what she actually wanted help with, and it wasn't technically self-care: she wanted assistance with pulling her refrigerator out from the wall in her kitchen so she could do her scheduled quarterly cleaning behind it and with cleaning up debris that had fallen into her yard.  Other than that, she had it covered, she told us, and so we did those chores and then decided to head to the Safari Park the next day.  (Side note: Grandmom had told us to put any limbs, sticks, or leaves from her yard on the curb across the street from her house instead of in her trash can, but I had dumped a bucket of semi-wet leaves in there anyway, thinking it didn't really matter.  As we walked out to the car to leave for the park the following morning, she cooly lifted the lid of her garbage can and peered inside, and then she said, "Somebody put debris in here!"  I had to admit that I had done it, and she said, "Well, next time remember to put all of that stuff on the curb where it's supposed to go; that's what I do!"  Ouch!)

We had a lot of fun on our return trip to the park, but not nearly as much as we'd had the first time when we had gone as a big group.  I have treasured those salad tongs since that day, though, remembering fondly both of our trips there with Grandmom and remembering how she so generously spent her vacation money to buy them for us.

Several years after our second trip to the park, Grandmom had a stroke, and her physical and mental decline began.  Many, many times when we visited her after she was in the nursing home, we talked about how much fun we'd had at the Safari Park; in fact, when her condition had progressed to the point where she couldn't carry on a conversation, we often described things from the day when all 11 of us went in great detail, in an effort to help her to remember that wonderful day and to help her to focus on a much happier time.  

On the night before Grandmom died, as my mom was sitting with her holding her hand, my sister Jennifer called Mom's cell phone and asked Mom to hold the phone up to Grandmom's ear.  Although Grandmom had been unresponsive for several hours before, as Jennifer again tried to use her words to paint a picture for Grandmom of that great visit, Grandmom smiled and her breathing pattern became more relaxed, and I have no doubt that that happy memory was one of the last things on her mind as she transitioned out of this life.

"Not too many people can say they've been kissed by a bison!" Grandmom said. 

Not Knowing: Grandmom's Story, Part 4

Continued from Part 3 - Grandmom's Story 

One of the things that my dad worried about the most when he was sick and even before then was his mom, who, since the death of my grandfather many years before, had been living alone in a small town in southern Alabama until she suffered a stroke at the age of 87.

My daughters and my dad, with Grandmom, Sept. 2010

For all of my life, I'd thought of my grandmother as one of the most fiercely independent individuals I knew, a person whose goal it was to leave the earth a better place than she'd found it, without asking for much help or (as she put it) "without burdening" others and without using anything as an excuse for not doing her part to help others in need.  Grandmom has perhaps one of the most interesting life stories I've ever heard, with lots of adventures and even more challenges faced along the way.  She pinched pennies, cut corners, and made due for all of her life, but, a deeply religious person, she never failed to tithe or to give of her time when her church or someone in her community needed assistance.  She was well-read, and maybe that was one thing that contributed to her acceptance of people from all walks of life, of all backgrounds and all races, which was not a practice often seen in that time.  From the way I saw things, Grandmom didn't concern herself too much with what a person's income or job title was or with how fancy of a car or house a person had; as long as someone seemed to have a good heart, seemed to be trying to "do right," and seemed to be genuine and kindhearted, Grandmom liked that person, and, like my dad, she extended courtesy and respect to most everyone she met.

Although the level of anxiety and extreme depression that Grandmom had been experiencing seemed to leveled off for the most part over the course of the weeks after she had been told about my dad's illness and subsequent death, her overall health did not improve.  On the afternoon of April 18, 2011, my mom got a call from the nursing home and was told that Grandmom's condition had worsened.  Mom called my sisters and me to update us as she hurried to get to Grandmom's side, where she stayed for the remainder of the day.  With Grandmom's breathing labored and her skin color changed, Mom talked to the nurses and decided to spend the night with Grandmom so she would not be left alone even for a minute.  The staff at the nursing home was kind enough to move Grandmom's roommate to another room so Mom could sit at Grandmom's bedside in privacy.  Throughout the night, Mom read to Grandmom, talked to her, and tried to reassure her that it was ok for her to go on ahead, reminding her that she was so loved and that my dad and my grandfather were waiting for her in heaven.  Grandmom seemed to be at peace, and, as the first light of day could be seen through the big window in the room and with my mom holding her hand, Grandmom took her last breath.

My sister Nancy joined my mom soon afterwards at the nursing home, and together they dealt with the things that needed to done, including calling the funeral home, packing up Grandmom's belongings, and saying their goodbyes.  There were some haunting similarities to what had had to be done after my dad's death just three months earlier, but at the same time this was a different situation for many reasons.  Given all that had happened to impact her quality of life and given her age and overall health, we all knew that Grandmom was prepared to go on ahead and that she very likely welcomed her own passing from this life.  From my perspective, it seemed that she had been leaning into the light for quite some time, dearly missing her husband of 50 years and many others who had gone before her - and feeling that her purpose on this earth had been served.  Personally, I will say that the news of her death hit me hard but that my mourning was much more for my own sake than for hers, and the grief from her passing and from that from my dad's was so enmeshed it was like pouring gas on a fire.  

I found a group email that my dad had sent out just before he'd gotten sick to update people about Grandmom, and I used that set of contact information to communicate the news to many extended family members and friends about Grandmom's passing and to let them know that we had decided to hold a memorial service for Grandmom in her hometown over Memorial Day weekend to give those traveling from out of town time to make the necessary arrangements.  Mom had the obituary run in the newspaper in Grandmom's town and contacted Grandmom's church to let them know as well.  

A couple of weeks later, a violent storm came through the area where I live overnight.  The noise of the thunder actually woke me up in the night, interrupting a dream that I had been having about my grandfather's brother Hilyard, whom I had only seen a few times in my life.  The last couple of times I remember seeing him, he was using a walker to get around; it had been many years since his passing and many more since I had seen him.  In the dream, though, he walked up to me unaided, looking younger than I remembered ever having seen him but so closely resembling my grandfather that it was easy for me to recognize who he was.  He looked at me and said very simply, "Your grandmother and your dad want me to tell you that they are ok," and then, before I could respond, he turned on his heel and strolled away.

When I checked my email early that next morning, I saw that I had a message from my dad's second cousin Carl, Hilyard's grandson, who had heard on the news that the storm had left damage to many homes in my city.  I was touched that Carl was checking in on us; I had not corresponded with him in the past except for the recent message about Grandmom - but I was stunned at the timing of the communication, just about an hour after I had had the dream about his grandfather.  I emailed Carl back and told him that we hadn't sustained any damage in the storm, but, not knowing what he would think if I told him about the dream, I didn't mention it then - but I did a few weeks later at the memorial service for Grandmom.

To be continued ... 

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.

Not Knowing: Grandmom's Story, Part 3

Continued from Not Knowing, Grandmom's Story Part 2

In reading the book "Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying," by Maggie Callanan and Patricia Kelly, I came across many things that spoke to me in regards to what my family and I had experienced during the end of Dad's illness.  I read the book with a goal of gaining some insight and perhaps even some perspective about my dad's death, and, in the process, I began to see that there might be another reason for the recent changes in my grandmother's emotional state besides the cognitive decline associated with her medical condition.

One section of the book is about things that may be needed in order for a person to die peacefully:

"Some people realize a need for reconciliation.  Some request the removal of a barrier standing in the way of a peaceful death. Still others need particular circumstances to die peacefully - perhaps choosing the time of their death or the people who will be there.

Realizing what they need, dying people often become concerned; some communicate a tremendous urgency.  Coherent requests usually bring action.  But requests that are vague or indirect may be missed or ignored, leading to frustration, anxiety, and sometimes agitation.  If the awareness of an important need comes late - when death seems to be imminent - the person may delay or prolong the process of dying in an attempt to settle an issue or effect a final reconciliatory meeting.

A person's anxiety, agitation, or prolonged dying can be upsetting for everyone ... Often, the response to agitation is to sedate the patient ... Sedatives may help relieve agitation, but medicines alone are not the answer."

Reading these passages caused me to see some things in a new light, not just about my dad's passing but about Grandmom in her terminal condition, including the fact that our decision not to tell her about Dad's illness or his death might not be the best choice.  According to the authors, "Sometimes a family decides to withhold info about the death of someone the dying person knows.  While this is typically done out of kindness and concern, the truth often brings peace instead of discomfort or upset to the dying person."

I shared that insight with my mom and my sisters, and we decided that Grandmom needed to be told about Dad.  None of us wanted to do it, but we believed it was in her best interest and we hoped the information would help to ease her mind.  As my sister Jennifer recounts, "We were so worried that she would get the idea that he abandoned her, that he didn't want to visit her again, or maybe even that he didn't love her anymore, and of course we wanted to do anything we could to prevent her from those thoughts, which of course were absolutely untrue."  We resolved to tell her the next time one of us could go with Mom to visit her. 

Shortly after that, on the Tuesday before Dad's burial was scheduled on Saturday, Jennifer arrived at our parents' house, and she and Mom went together to see Grandmom.  Here is Jennifer's recollection of what happened when they got to the nursing home:

We rounded the corner and saw that Grandmom was sitting up in her wheelchair, which was parked just outside her bedroom door.  We greeted her, and then I kneeled down right in front of her and held both of her fragile hands in mine.  I said something like this:

"Grandmom, I want to tell you something that might make you sad, but I feel like you need to know, and  I don't want you to worry.  Bill was sick and had cancer.  He went to the best doctors and the best hospitals, but, even as strong as he was, he was not able to fight off the cancer.  He passed away and is in heaven now with God and with Roy [our grandfather, Grandmom's late husband].  He is not in any pain.  You should not worry.  Vicki and Stephanie and Nancy and I were all with him while he was sick, and we took good care of him.  He always asked about you and tried so hard to come back to see you again, but he was too sick.  You were so important to him, and he loved you so much.  We promised him that we will take care of you no matter what. Then, when God decides it is your time, you will get to go to heaven and be with Bill and Roy again."

Somehow I did it without crying -- I just felt really focused on giving Grandmom some relief and definitely did not want to cause her any additional sadness or worry about why I was sad, and so I just talked clearly and slowly and looked right into her eyes and told her.  She wasn't really able to talk much, but she definitely seemed to be listening to me, and I truly think had a look of relief and understanding on her face after she heard the news.  She did not cry.  A little while later, when we left, I hugged her again and told her I loved her and that Dad loved her and that we did not want her to worry. 

In the days that followed and over the course of the next two months, the nurses reported that she was sleeping better and was much less anxious.  She required fewer medications and wasn't crying anymore.  We like to think it was because she understood that her son loved her until he took his last breath and that, given the information about what had happened to Dad, she was able to hold onto the belief that he had gone on ahead but was waiting for her in heaven. 

To Be Continued - Part 4 of Grandmom's Story, Coming Soon

Not Knowing, Part 2

Continued from Part 1

It's not always easy to visit someone in a nursing home; seeing a person that you care about in that type of environment often brings up a lot of emotions, some of which are not very pleasant.  Although I did it as often as I could, before my dad got sick, I thought it was emotionally difficult to visit Grandmom; she had changed so much in such a relatively short period of time, and she seemed so sad, so lost, so much of the time.  

Dad with his mom, on her 89th birthday, one year before she was put on hospice and 13 months before he was diagnosed with brain cancer

After Dad's diagnosis, though, it was even harder, physically - because my sisters, our mom, and I needed to be with Dad - and emotionally - because we had decided not to tell Grandmom about Dad's condition.  When we went to see Grandmom during that time, we had to come up with things to talk about in her presence that didn't have to do with what was going on with Dad, which was very challenging because, truth be told, Cancer and the things that came with it were pretty much all any of us were thinking about then. But we did what we had to do, and we visited Grandmom as often as we could, as Dad made it through surgery, and then went to rehab, and then went to the Brain Tumor Clinic at Duke, and then started chemo.

My family had made the decision not to tell Grandmom about Dad's illness early on; when my sister and I went to visit at the nursing home for the first time after Dad had been diagnosed, we shared the bad news about Dad with the staff there but made it clear that the information was not to be shared with Grandmom as we did not want to upset her.  Then, when Grandmom took a turn for the worse on the day after Thanksgiving, we took that decision a step further by extending the shelter to Dad as we kept the news about Grandmom's decline from him. As we had been doing with his mom, we didn't want him to have to worry or to feel guilty about anything, given what he was battling himself at the time.

Even after the hospice nurse predicted that Grandmom wouldn't "be with us" for more than a couple more days after that, somehow she pulled through, a testament to her strength and a sign of what we later realized but didn't know at the time - looking back from our vantage point now, it seems that Grandmom was waiting to say goodbye to her son, and, not realizing why he wasn't there so that she could do so, Grandmom hung on, literally for dear life.

Me, showing Grandmom one of the cards she got for her 90th birthday, just before she went on hospice care

After Dad's second round of chemo, at his insistence, my mom and my sister Nancy took him to visit Grandmom at the nursing home.  He had been getting around my parents' house using a walker, but he had a wheelchair for longer distances and that's what he used for transport that day.  As always, Grandmom smiled from ear to ear when she saw Dad that day; discordantly, in what I saw as both a relief and also an alarm, she did not seem to notice the wheelchair or the jagged scar on his head at all.  

Not long after that, Dad had to go to the hospital for the second time and was in such critical condition that it was all we could do to manage the care that he needed between my mom, my sisters, and me. My sisters and our children visited Grandmom on Christmas Day, again keeping the news of Dad's situation from her, and reported back that she was doing about the same, holding her own and hanging in there.  Other than that, though, for the ten days we were in the hospital that second time around and during the six days after that when Dad was home before he went on ahead, we relied on reports from the hospice nurse who called every two or three days to report on Grandmom's condition, and we were relieved each time to hear that there had been no change on that front.

Christmas Day 2010

When we made the decision to bring in hospice care for my dad, it was difficult to wrap our brains around the fact that both he and his 90 year-old mother were both on hospice.  The way that Grandmom had defied the odds so far, despite the fact that her doctor and later her hospice nurse had both said her days were numbered - not once but twice, over the few months preceding that time - allowed us to believe that Dad would persevere and beat the odds as well, thus potentially allowing both of them to be with us for some time to come.  Those rose-colored glasses were a very powerful coping mechanism for us at the time, but they were also what created the perfect storm-type of setting for my family to enter into a state of utter shock when Dad went on ahead, less than a week after he came home from the hospital and hospice care had begun.

We just thought it was hard to visit Grandmom before all of this happened; after Dad's death, it was an overwhelming and almost insurmountable feat, for so many reasons.  Again, the shock that we were all dealing with in our early grief made it difficult to put one foot in front of the other at that point; I personally felt as if I was in the middle of a nightmare from which I kept expecting to awaken.  Dazed, confused, stunned, devastated - all of those things made it challenging to do much of anything in those days.  Pretty much everybody that I came into contact with in the month or so after Dad's death knew what my family had been going through, and so thankfully I was spared having to say the words about what had happened out loud:  saying My dad died was something I was not adequately prepared to get through for many months after the fact.  Telling Grandmom that her favorite person in the world, her son, whom I am sure she still thought of as her baby, as someone for whom she was responsible for protecting in many ways, was no longer on this earth, was more than I could cope with at that time.  Even more than I didn't want to tell her, though, I didn't want her to have to know.  Whenever I thought about breaking the news about Dad's death to Grandmom, I kept going back to what I had learned for myself the night before Dad's surgery and what I still believed to be true: not knowing is not always the worst thing.

I saw a story today about an Olympic diver from China whose family kept the news of the deaths of her grandparents and of her mother's battle with cancer from her for years while she was away living at a training camp, presumably so as not to distract her from achieving her goal of winning a gold medal at the Olympics (which she just did). 

CLICK HERE TO READ THE STORY

I realize that the vast majority of people who read that story will think it was unreasonable or possibly even cruel to have kept that news from the young athlete, but I just don't think it's something that can be adequately understood by those of us who live in situations were there hasn't been such value placed on competition and on winning .  I think such values, much like grief, can result in some very different choices being made, but that doesn't necessarily make those choices wrong.  For the most part, all of us do what we think is the right thing to do in the given circumstances, given our resources and our perspective, and I'm sure that's what this girl's family was doing as well, just as we were doing by not telling Grandmom about Dad.

Sometimes, though, lessons can only really be learned by living, and perspective can only be gained through experience.  A few weeks after Dad went on ahead, my mom started getting phone calls from the nursing home about an increase in Grandmom's levels of sadness and anxiety.  Grandmom actually had several episodes of what I can only think were panic attacks; she could not communicate clearly enough to explain to anyone what was going on, and so the only thing anyone could think of to do to help her was to increase her anti-anxiety and anti-depression medicines.  That ended up helping some, but we continued to get reports that she still she seemed distressed much of the time.

Not long after Dad's memorial service, I started going to a grief counselor.  The first thing I asked her in our first session was if she could recommend any books for me to read that might help me.  (Side Note:  That was the beginning for me of a shift from being obsessed with researching treatment for brain cancer to being nearly consumed by wanting to learn more about grief in an effort to cope, something that I continue to do even now.)  The book she suggested was "Final Gifts", which was written by a hospice nurse named Maggie Callanan.  In reading it, I learned many things and gained a new frame of reference, and I also started to think that maybe we were making the wrong choice by not telling Grandmom the truth about what had happened to Dad.

Continued ... Not Knowing, Part 3

Part 47 - Rose-Colored Glasses

Continued from Part 46

I once read that all mammals have approximately the same average number of heartbeats in a lifespan. If that’s true, it means that a smaller animal with a faster heartbeat does not live as many years as a human with a slower heartbeat. If that’s extrapolated to people, then a well-conditioned athlete with a slower resting heart rate theoretically would have a longer life than an out-of-shape person with a higher heart rate.  Not this time, though: that’s what we learned when Dad got sick and what was at the root of the utter sense of shock and disbelief that everyone who knew him felt first when he was diagnosed and then even more so ten weeks later when he died.  

There was no disputing the remarkable physical shape that Dad was in just prior to his diagnosis.  I'm not sure of the exact statistics, but I feel pretty certain that only a handful of 67 year-olds in the world can swim 2.4 miles, ride a bike 112 miles, and then run a 26.2 mile-long marathon, all without a break, and that is the distance of the Ironman triathlon in which Dad was set to compete.  Dad was well-trained, and he was ready for the race, and that was part of the reason we were so shocked by the diagnosis and by the events that followed.

Besides my dad’s exceptional physical condition, there were lots of things that influenced my family’s beliefs about Dad’s prognosis.  Even after the devastating diagnosis with the horrible prognosis was handed out, we had much more of a bias than is typically present about what we thought the outcome would be in Dad’s case because of some specific past experiences.  

Hit by a car while running a marathon ... still lucky!

As I detailed at the beginning of Dad’s story HERE, he had an extensive history of accidents and injuries and even some medical issues that came as a result of his athletic pursuits. More than anyone else I’ve ever known, though, Dad always seemed to have luck on his side in this type of situation (and a little perspective: it’s technically not lucky to end up with a broken leg as a result of getting hit by a car, but Dad always considered himself to be lucky because he considered other potential outcomes); historically, he was very adept at landing on his feet and at successfully dodging a bullet health-wise.

Another thing that made us think that Dad would defy the odds after the diagnosis was our experience with his mom, who had been very ill for over two years and who in fact had been receiving hospice care since the month before Dad was diagnosed.  Just after Grandmom’s 90^th birthday, my parents met with her doctor and, due to severe swallowing problems and progressing weakness affecting her, they were told that she likely had only had a few weeks left to live.  But her doctor and the hospice staff were wrong: she hung in there for almost exactly six months after she entered hospice care, and, in a story I will tell soon, I am certain that her death was directly linked to the timing of my dad’s.  Before she’d had a stroke at the age of 87, Grandmom had lived a very active, independent life, and that’s the lifespan I had expected for Dad (or maybe even longer, given current and future medical advances). Grandmom was tough, but she was obviously a generation older than my dad and, unlike Dad, her health had been declining for several years.  So when I heard the term “terminal” and learned about the expected prognosis for someone with Dad’s diagnosis, I used my family’s experience with Grandmom to our favor and decided to believe that the information didn’t apply to Dad, just like what we were told about Grandmom didn’t come true.  Simply put, I figured that if she could defy the odds and live six months longer than had been predicted, surely Dad, who came in younger and healthier and stronger, could KICK CANCER’S ASS, probably even with one hand tied behind his back!

Although I do it myself sometimes for lack of more appropriate terminology, it really isn’t very accurate when what my dad and my family went through is referred to as “a battle,” because this is another thing I came to realize during Dad’s illness: A battle is something that can possibly be won, and really, against GBM (the type of brain cancer that Dad had), there is no winning.  For many other types of cancer, fortunately, early detection and cure rates are increasing, but not for GBM.  We’d heard so many inspiring stories, even some about people with other types of cancer who’d been given a not-so-great prognosis and had proven the doctors wrong, and we expected a story like that for Dad.  Through networking on cancer support websites on the Internet, I made contact with a few people who had had brain cancer and survived long term, a few even who’d reportedly had GBM.  If they’d survived, why couldn’t Dad?  To me at the time, it almost seemed like a given that my strong, persistent father would pull through since a select few others had been able to do so.  But, as we came to find out, in the vast majority of cases of GBM, it’s less of a battle and more of a siege:

Looking back, I think Dad’s inability to grasp his own diagnosis made it harder for us to do so as well (or possibly: it made it easier for us to stay in a state of denial).  On the day before Dad’s surgery, which happened to be his 67^th birthday, he wondered aloud about the upcoming surgery and about what was wrong, as he put it, and he said, “Well, I know it’s not cancer.  I’m too lucky to get cancer!”

"Correction, Dad," I thought.  You are “too” lots of things to get cancer:  Too in-shape, too much of a positive thinker, too healthy, too in-the-middle-of-life, too much of a land-on-his-feet kind of guy, too much of a Good Guy, too NEEDED by so many people.  Like Dad, I didn’t believe it could be cancer, and, even after we were told that it was, I still didn’t really believe it was or that what would end up happening could happen.

Another thing that contributed to my family’s disbelief in the diagnosis and the potential outcome - to our wearing of rose-colored glasses - was that, given his history and fantastic physical condition, even the medical people involved in the case couldn’t believe the diagnosis or later the decline. One of these people was his doctor, a general practitioner who had treated him for colds and the like for about a decade.  

News travels fast in a small town, and we knew this would certainly be the case in the community in Missouri where my parents had lived prior to their move to Tennessee, the town where my dad’s company was based and where he still resided part-time so that he could work in that office.  And so on the day after Dad’s surgery, my sister Jennifer and I decided to call Dad’s hometown doctor to get his “take” on the situation; I guess it was part of our “leave no stone unturned” plan.  When we got Dr. Rod, as Dad called him, on the line, he said that he had heard the news about Dad.  “I just can’t believe it!  I saw him recently, and I thought he was the picture of good health!” he said.  Me, too, Dr. Rod; me too.  He wondered aloud if a course of steroid nasal spray that Dad had taken in the recent past might have caused a fungal growth in his brain:  “Maybe that’s what some or all of the mass really is,” he said hopefully.  [I later mentioned that idea to the neuro-oncologists at Duke, and they put Dad on an anti-fungal medication, just in case, or maybe just to placate me.]  And that’s how we learned that denial and bargaining are dishes enjoyed not just by those who love a patient but also sometimes by medical staff members too, a fact that we would see yet again with Dad’s oncologist towards the end of Dad’s illness when I had to point out how weak Dad was so that the oncologist would realize that it was time to call in hospice.  It's often said that there is strength in numbers, and what I came to see is that there is also great strength of denial in numbers as well.  With Dad, in fact, it seemed that pretty much everyone involved – at least everyone who knew him as the Ironman athlete that he was – was wearing rose-colored glasses.   

Dad, hammering in a stake to put up a tent in a field, not long before his diagnosis

Another factor related to our expectations about an exceptional outcome for Dad came from Dad’s oncologist and later, on an even greater scale, from the team of experts at the Brain Tumor Clinic at Duke University.  Over and over, we were told that the treatment plan being used for Dad had great healing potential and specifically that the medicine he was getting, Avastin, was “a magic bullet.”  Maybe I just didn’t hear and/or process it at the time, but I don’t recall a risk of a decline at the rapid rate at which it occurred for Dad ever even being mentioned during the pep-talkish treatment plan meeting at Duke or at any of the doctors’ appointments we had.  As the oncologist said the day Dad was admitted to the hospital for the second time, the chemo Dad was on wasn’t supposed to suppress his immune system; an infection as severe as he had hadn’t been seen before in others on the same treatment protocol.

As I’ve mentioned in the telling of this story, I served as the Microscopic Improvement Recognition guard during Dad's illness; whenever I was around Dad while he was sick, I was always on the lookout for even the smallest sign that he was getting better: after the surgery, during rehab, after the Avastin protocol had been started, and even once the massive amounts of medications were administered when Dad was so sick during his second hospitalization, I was diligently watching for an indication of his getting better.  On the day after Round 2 of the Avastin/chemo treatment, when I noticed that he was regaining some sensation in his left arm, I was convinced that was a sign that he was going to pull through.  I even said something to him that night about maybe writing a book one day about his incredible recovery.  “We’ll see,” Dad said, either not really interested in thinking about such a project or not fully believing that he would have such an impressive story to tell (Dad, the Ironman athlete, never thought of himself as that big of a deal; as dedicated, kind, and positive of a thinker that he was, he was also just that modest.)  “We WILL see, Dad,” I told him, with total conviction that he was going to get well.

The last reason for the rose-colored glasses wearing during Dad’s illness was perhaps the most reasonable:  we had to stir in some denial and some hope just to stay afloat in our massive state of shock, in the midst of the trauma.  

Even when Dad was so weak and sick in the hospital right before he went home on hospice, I was convinced that he just needed nutrition and sleep to get better.  I will never forget the words he said late at night a couple of nights before he got to go home:  “I need to remember to tell Mom [he meant my mom – he often referred to her as ‘Mom’ when he was talking about her to my sisters and me] how much I love her and that I couldn’t make it without her.  I am going to fight, as long as you all just help me remember to fight!”

I planned to help him remember and to help him fight, but, after we got him home, I realized it wasn’t really under my control or his.

While our bias was helpful in allowing us to hold onto hope while Dad was sick, it has served as a barrier in the processing and accepting of what ended up happening.  It’s why I thought he would be with us for a long time still, so much so that I left to go home that first Sunday in January after he’d come home on hospice.  It’s why I sometimes still talk about him in the present tense, and it’s why, even after everything, I still don’t fully believe that he is gone.

Up next ... Part 48 - I'll Love You Forever